MyTippy

More Lung Infections

2012-01-21T04:51:00.000-08:00

Late last week I received word that the MRSA lung infection is gone. However at the same time I found out that the Serratia, which has colonized in my lungs, has grown enough to be noticed. Then earlier this week the Infectious Disease doctor decided that the Serratia has gotten bad enough that it needs to be treated. So I am now on a 2 week course of Tobramycin inhalation treatment. I now have had one form or another form of lung infection since mid September 2011.

Finally No MRSA

2012-01-13T08:11:00.000-08:00

I just received the results of my latest sputum culture which showed no MRSA. This is GOOD news; I have been fighting this MRSA for 8 - 10 weeks. Of course it showed Serratia, but then that organism is colonized so I always have it showing up.

The Rest of The ER Story

2012-01-09T08:36:00.001-08:00

On December 27, 2011 I spent the night in the ER because I was experiencing such bad pain. As I explained in my previous post, my doctors decided to send me home after increasing one of my pain medicines and replacing the other with a stronger pain medicine. For the past two weeks I have been on the new medicine and while it helped bring the pain down. I would rate the neuropathy pain at a level 4 to 5 on a scale of 0 to 10 with 0 being no pain and 10 being the worse pain I could imagine. My Internist doctor told me that I could take 2mg or 4mg of the pain pills every 4 to 6 hours and for the past 2 weeks that is what I have been doing.

This past Thursday morning I took the last of the Rifampin, the medicine the Infectious Disease Doctor is trying on my MRSA lung infection and which we found out was interfering with my pain medicine. I was hoping that once I finished with the Rifampin the pain level would subside however that hasn’t happened, or hasn’t happened fast enough for me. Yesterday the pain level was back up to the 4 to 5+ levels even though I was taking the higher amount of the oral pain medicine. Late yesterday afternoon, when it was time for me to take my regularly schedule dose of L I noticed that the pain level decreased to a solid 4. Then yesterday evening it was time to replace the pain patch and about 20 – 30 minutes after that the pain level subsided to a level of 0 – 2.

I had the issue with my lower dose pain patch where for the first 48 hours the pain patch delivered enough medicine. However, after 48 hours, it seemed as if the patch wasn’t delivering enough pain medicine. So my doctor had me replace the patch after 48 hours instead of waiting for the recommended 72 hours. Based on my experience yesterday, I wonder if I am experiencing the same issue or if there is another reason for the increased pain yesterday. I always track my pain levels and the amount of oral pain medicine I take for this breakthrough pain, so I will soon know if I am having the same issue of the pain patch not delivering enough pain medicine the closer I approach the 72 hour limit.

I hope the Rifampin will leave my system soon so I can go back to my old pain routine which worked. I am now satisfied that I do need the pain medicine to manage the neuropathy pain.

I Spend the Night in the ER.

2011-12-29T09:17:00.000-08:00

I spent Tuesday night in the ER. Here is an email about what happened:

I was in an extreme amount of neurological pain (10 of 10) Tuesday night, so P called my Neurologist. She had given us her cell phone number some months back. She asked what had changed recently and P told her about the Rimfapin, the medicine the Infectious Disease Doctor is trying on my MRSA lung infection. My Neurologist told me she needed to look it up and would call us back. When she called back she told us that it seems that Rimfapin decreases the effectiveness of both my Fentanyl and Oxycodone pain medicines so she told P to take me to the ER for morphine. So at 10:30 - 11:00 PM we went to the ER.

I stayed in the ER overnight as there were no beds available in IMCU. It's a little confusing as to whether or not I was going to be admitted. The doctor said yes as soon as there was a bed available. The nurses said there may not be a bed available and that I may be discharged. My understanding is that Neurologist wants me on an IV drip but for how long I don't know. My guess was that in the morning this would all be sorted out and that if necessary to admit me, or transferred me to another hospital.

The morphine injected through an IV certainly made me more comfortable.

In the morning after talking to both my Internist and my Neurologist they decided to put me on an oral form of Morphine and to increase my Fentanyl patch. My Internist didn’t want me admitted and thus be exposed to more hospital drug resistant lung infections. So after a miserable night I came home. I just pray this all works out and will clear up the MRSA. It certainly would be a shame to go through all of this only to find out that the MRSA has colonized like the Serratia has.

More and More Doctors

2011-12-18T04:42:00.000-08:00

I went to my Pulmonologist on Friday to see what she has decided to do about the MRSA that has stubbornly refused to go away. I have been fighting this latest MRSA infection for a month or more.

Now my Pulmonologist has decided it is time to refer me to an Infectious Disease Doctor because she is beginning to think that the MRSA has colonized and therefore will never completely be cleared up. So Monday I go to the Infectious Disease Doctor. If the doctors decide that the MRSA has colonized, I will just live with it and will only treat the MRSA when it flares up and I have more symptoms of an infection. I already have Serratia colonized so I know how to tell if the symptoms are getting to the point where I have to call my doctor.

So I won't know until Monday what course of treatment the doctors decided. Treat or not to treat.

P.S.
Yesterday (Thursday) my Infectious Disease doctor called to tell me that he is ordering an additional oral antibiotic. So I will now be able to spend Christmas at home instead of in the hospital as I feared.

I Still have a Serious Lung Infection

2011-12-15T04:29:00.001-08:00

Yesterday I received the results of my latest Sputum culture and I still have MRSA in my lungs. Today I have a blood draw ordered by the Infectious Disease doctor. Also today my Pulmonologist and my Infectious Disease doctor will have a conference and tomorrow I have an appointment with my Pulmonologist. If I end back in the hospital, I hope I will be home by Christmas.

Tippy is Here

2011-12-05T04:07:00.000-08:00

When P. was on vacation in Florida K. and K. stayed here with me. This meant that while they were at work, Barley their Schnoodle was here with me. That is when I realized just how lonely the days are around here, so I began to think of getting a dog. I knew that P. wasn't allergic to a Schnoodle (a cross between a Poodle and a Schnauzer) which is what Barley is. After P. and I talked about this, I put my name on a waiting list with the breeder K. and K. used to get Barley. However, the family soon talked me out of the idea of getting a puppy. I wouldn't be able to train him and it would be just adding more work on P. who already has enough work.

So I looked in Craigslist for an adult Schnoodle, and found on up in Appleton Wisconsin. After exchanging emails and finally phone calls J. and K. left at 5:00 AM Saturday and drove the 220 miles there and back picking up my Schnoodle.

I wanted to name him Tippy2 after Tippy the dog we had in Kansas, but it soon became apparent that everyone myself included called him Tippy. So his name changed from Tippy2 to Tippy. He is a cute little guy and extremely calm. Yesterday he lay by me on the bed for over an hour. He was on his back and all he wanted was for me to scratch his tummy.

So here is Tippy.

I made home

2011-11-28T10:53:00.001-08:00

Just before lunch today I was discharged from the hospital. I am glad they have hospitals when I need them, but there really is no place like home.

Thanksgiving in the hospital

2011-11-23T13:47:00.000-08:00

Here I sit in ICU. The Home Health Nurse was at the house to change my Foley. She called my pulmonologist and told the Dr. How my lungs sounded. The result was my being admitted to the hospital an being placed on two strong IV antibiotics. I have two different bacteria in my lungs, I have MRSA and Serratia. Which is the reason for the two antibiotics. I have to say that right now I am tired. It is a lot of work being admitted to the hospital.

Bacon Explosion Weekend

2011-11-01T07:10:00.000-07:00

It started in January 2011 when my brother C. and I started talking about our next food weekend. We decided we would have one in April 2011. However, due to one thing or the other having a food weekend in April just didn’t seem to work so we decided to just not make any plans for when we would have the next food weekend. Nor did we talk about what food we would highlight. We did discuss the idea of having one main food item and that every dish would highlight that food. I do not remember when we decided that we would have Bacon as the food, but by mid to late summer it was decided to highlight bacon. Because P. was going to be on a week vacation in Florida C. and I decided to have it on the last Saturday of October. The one thing brother C. said was that he didn’t want to have a huge number of people at this food weekend.

As the summer drew to a close, and two of my nephews were married, I decided what a nice thing it would be if I invited both couples to the Bacon Explosion weekend. Of course our four children and spouses would be here. Suddenly the number of people coming to this weekend climbed to 15. At some point in all of my enthusiasm I was asked if I had enough beds for everyone. I suddenly was a bit worried, but then decided that if I didn’t have enough beds downstairs some could stay at daughter K. or at my Aunt and Uncle who live close by. As it turned out our youngest son K. and his wife C. stayed at his sister K.

On Friday son J. took the day off work to be here getting everything setup for the Bacon Explosion. He and I split the cost of a pork shoulder and brisket which he smoked on Friday making the smoked pork into BBQ pulled pork buns for lunch on Saturday. He also cleared the kitchen counters so there would be enough work space for everyone to prepare their dishes. People started to arrive in the early evening with son C. and grandson L. arriving about the same time as my nephew I. and his wife V. My brother C and Nephew J. and wife T. came the furthest arriving about 10:00 PM. I have no idea how late everyone stayed up visiting because I and grandson L went to sleep at 7:30 PM.

On Saturday morning V. baked the two pans of monkey bread which we had for breakfast. It was a delicious breakfast especial when washed down with coffee. Almost immediately after breakfast the activity of preparing the Bacon Explosion dinner began with grandson L. and his uncle K. preparing the candied bacon for the bacon ice cream. At the same time my brother started to smoke a ham, I know that ham isn’t bacon, but I like home smoked ham and because I am not able to do anything I asked C. if he would do this for me. He also made two loafs of No-Knead bread for my enjoyment.

The menu:

For appetizers we had:

Candied brown Sugar Bacon.

20 dollars a pound bacon on crackers and Samples of smoked ham on crackers.

For the main course we had:

Bacon wrapped Dates.

Miniature Bacon Quiches.

Miniature BLTs, made using No-Knead bread baguettes baked with bacon in them.

Bacon Wrapped Stuffed Jalapenos.

Bacon Wrapped Sliders.

And for vegetables we had:

Bacon Broccoli Salad.

Roasted Butternut Squash with Bacon.

For dessert we had:

Bacon Ice Cream.

It was a great successful weekend. I had so much fun and I think everyone else had fun also. Not only did we have a lot of cooking and baking activity, I also asked the guys to do a number of chores around the house, things like bringing the planters into the garage, changing the batteries in the remotely activated front door lock.

And now we will take a year off before having the next Food Explosion because next summer the kids are planning a roast pig extravaganzas. One of the kids is graduating college and another is getting a Master Degree and they want to celebrate these accomplishment. So I think we will want until 2013 before having another Food Explosion event. Brother C. and I have agreed that if we have these too often they get to be too much work and no longer fun.

An Even Worse Infection.

2011-10-07T08:22:00.000-07:00

Tuesday evening September 27, 2011 I was in bed and P was out to a dinner with some of her friends. About the time P would be getting to the restaurant I suddenly spiked a temp of 102. +. I was shivering so bad I almost dropped the phone, but I didn’t so I called our neighbor who came over and helped by piling blankets on me. The neighbor S. also called P and had her come home. On her way home, she called my Pulmonologist who told her to bring me to the hospital and she would call and get a bed reserved for me.

That was the beginning of a 9 day stay in the hospital. At first they didn’t know what type of infection I had because it takes time to grow a Sputum culture. So I spent 2 and a half days getting antibiotics that weren’t the correct antibiotic for the infection I have. On that Friday, they finally had the returns of the cultures and discovered that I had Serratia and Maltophilia. I not only had Serratia and Maltophia in my lungs but also in my blood and in my urine. That is the day I started to respond to the correct antibiotic. When I look back on those first couple of days I really don’t remember much.

Even when I was on the correct antibiotic I still was really sick. But on this past Tuesday the doctors didn’t look as sad and worried when they came into my hospital room. And on this past Tuesday the doctors started talking about when to release me. I was sent home on Thursday October 6. I can’t tell you how good it feels to be home again. Even though, I was in Isolation in the hospital which as it turned out to be one of the few rooms with windows.

However, with all the medicine, I still think it was all of my friend’s prayers that had a lot to do with my speedy recovery.

An Almost Clean Bill of Health

2011-09-18T07:00:00.000-07:00

Wow after having a lung infection for the past 4 ½ weeks, I received good news last week. My latest culture shows that the MRSA lung infection I’ve been fighting is gone. The culture did show that I have some Serratia bacteria but it wasn’t enough that my pulmonologist is going to put me on yet another course of antibiotics. She will just keep an eye on it.

In order to rid myself of the MRSA lung infection, I ended up in the hospital for 24 hours so they could install a PICC line and start me on an IV antibiotic. I had to be in the hospital for that amount of time so they could be certain that I wouldn’t have any adverse reaction to the medicine.

So after 14 days on an oral antibiotic and 10 days on an IV antibiotic I received a clean bill of health.

Then this past Thursday I had a neurologist appointment and she was pleased with how I was doing. She told me that it appears the Spinal Cerebellar Degeneration has slowed down and it appears that I have reached a plateau once again. Having reached a plateau and seem to be staying there, which is great news. In fact I don’t have to return to the neurologist for 6 months.

So it has been a month of mixed health news. I received a good report from the neurologist and a mixed report from the pulmonologist.

Sick Once Again

2011-08-16T03:20:00.000-07:00

Well it was a good thing I managed to get to church in July. It doesn’t look like I will be going to church with the large crowd nor does it look as if I will be going anywhere where there are crowds. Last week Monday I noticed my temperature was beginning to rise and by Thursday I was running a low grade temperature. Friday the home health nurse came and collected a sputum sample so the lab could culture it.

Yesterday morning the nurse called to tell me that I have yet another lung infection. Yesterday afternoon the doctor office called to tell me that they had ordered an antibiotic. So I will now have a couple of days with an upset stomach and being even more exhausted, all because of the antibiotic. If I remember correctly this will be the 3rd lung infection I’ve had this year.

I certainly am glad that P. and I went out last Tuesday to celebrate my birthday, even though my birthday isn’t until next week.

Happy Birthday Lunch To Me

2011-08-10T02:16:00.000-07:00

Yesterday P. and I went to the Olive Garden restaurant to celebrate my birthday. I know my birthday is still a couple of weeks away, but we know that we have to do something like this when I feel up to going out. Last Tuesday I was too tired and kept falling asleep and today I feel good. There is no telling how I will feel next Tuesday so yesterday we went Out to Lunch.

We left the house about 11:30 in the morning and drove the 9 or 10 miles to the restaurant. When we arrived we found that all the handicap parking spots were filled so P. dropped me off at the front door and I went inside while she parked the van. Once P. walked in we were seated right away. We must have been just ahead of the lunch crowd because when we left at 1:00 PM there were people waiting outside the restaurant.

We decided to have stuffed mushrooms for an appetizer because salad and bread sticks come with our meal. P. decided to have the Tour of Italy, Homemade lasagna, lightly breaded Chicken Parmigiana, and Creamy Fettuccine Alfredo. I decided to have Braised beef & Tortelloni, Tender sliced short ribs and Portobello mushrooms tossed with asiago-filled Tortelloni in a basil-marsala sauce. Boy was it all good. And one nice thing we discovered was that because it was lunch time, the portion sizes were just large enough.

After leaving the restaurant we stopped at my neurologist to pick up some prescription refills. We were home around 1:30 PM. Boy oh boy I was so exhausted that I ended up taking a 2 hour nap. Needless to say I had a sandwich and some grapes for supper.

I must say that it really bothers me to have to play this “Do I Feel Well Enough…” game. But unfortunately that is now a fact of life for me. By the time we arrived at home I was so exhausted I couldn’t get to bed fast enough. However, knowing that this is now a fact of life doesn’t make it any easier to accept. It seems that my energy is slowly drip by drip dripping away. Sometime it is so much work to just move my legs or lift my arms, they just feel like dead weights.

But it could be worse; I could be in such a weak condition that instead of going out to Olive Garden, Olive Garden would have to come to me as carry out. It really was a lot of fun to sit across a restaurant table and have a meal, talking about the kids, grandson L. the house, car, any and all those things that make up a conversation. Also when sitting in a restaurant, you over hear tidbits of other conversations. The four ladies sitting behind me were passing photos of children and grandchildren around their table. They were also discussing how easy or difficult the parents of their grandchildren had it.

I am really glad that I can still go out for special occasions, even if we have to work around how I feel.

I Made It Again

2011-07-20T06:40:00.001-07:00

Last week Thursday and Friday I had appointments at the clinic. Thursday’s was a Venous Doppler to see how the blood clot in my left arm was doing. The appointment on Friday was with my pulmonologist to hear the results of Venous Doppler and to see if I would be allowed to stop taking the Coumadin. However, the Doppler showed that the blood clot was still there but that it was a bit smaller so the decision was that I remain on Coumadin.

Even with having a busy Thursday and Friday I was determined to get to church on Sunday which I managed to do. I think it is always better to be in church rather than listening to the message at home by yourself.

Then on Monday the lunch lady brought her 10 year old son along so he and I could play a rematch game of Uno. Earlier, he won 2 games to my 0 games, and I wanted a rematch. It turned out that I should have been satisfied with only losing 2 games. We played 3 more games and I only managed to win one of those games. So now the score is J. 4 wins to my 1.

Then came Monday afternoon when all the busyness caught up with me. I fell asleep mid afternoon, managed to wake up with P came home from work and had supper. After supper I went back to sleep and didn’t wake up until Tuesday morning. I figured out that I’d slept 12 hour with only a little spot of being awake to eat supper. It is times like these that remind me that I really don’t have any stamina or energy reserve to call on.

However, it was fun getting out of the house even if it were to go to the clinic. I loved being able to make it to church and had loads of fun playing Uno even if I lost most of the games. So all and all it was worth having to sleep so much to recover.

I Made It

2011-07-12T04:58:00.001-07:00

I made it to church this past Sunday for the second time this year. Once the flu season was over, I was fighting yet another lung infection so I wasn’t able to get to church. However, I now am free of any infections and the flu season is over, so now is the time to get to church. As you see from reading It Was Approaching a Ten , I didn’t make it that Sunday. So I hoped to make it this past Sunday only to find out that P was going to her niece’s church because her niece’s baby was being baptized and that would be too far and too long for me. So I called daughter K and went to church with her and her husband.

There is just something that I like about being in church rather than listening to the sermon at home. Hopefully I will make it to our church this coming Sunday.

It Was Approaching A Ten

2011-07-04T05:23:00.000-07:00

On Saturday I planned on going to church for the second time this year. I took thing easy, managing to take a two hour nap in the afternoon and still managing to fall asleep early Saturday evening. Fine I thought come Sunday, I really will make it to church.

However, when I woke up Sunday morning, I was just exhausted. That exhaustion that causes tears to run down your face, there was no way I was going to be able to make it to church. In fact even before P. left for church I was taking the first of a couple of yesterday’s naps. Even with those naps, I was exhausted all day yesterday and then mid to late afternoon the pain started. My feet and entire legs, lower arms, palms and fingers all felt as if they were on fire. I thought about taking an additional pain medication, however as tired as I was I didn’t dare risk taking the pain medicine. I didn’t want to cause more medical problems with my feeling so tired and not wanting to go to sleep and not waking up. At my next appointment with my neurologist I need to talk to her about this issue of taking pain medication when feeling so exhausted.

The pain continued to get worse. By early evening I couldn’t find a comfortable spot. Nothing I did helped with the pain. I would manage to fall asleep only to awaken by the pain a couple of minutes later. I finally gave in and took by evening medication which contains a pain pill a half hour early and that seemed to help. I returned to reading my book and shortly after midnight was able to fall asleep.

At 2:30 AM I was bolted out of sleep by a return of the pain. This time I didn’t feel so exhausted and because the pain was once again approaching that dreaded level 10 on a scale of 0 to 10, decided that it had been 6 hours since I had taken the last pain medication so I took another pill and managed to fall back asleep after a half hour. This morning I am still tired with a pain level of 4 to 5. I now face the issue of “Do I take a pain pill in order to get ahead of the pain”; however pain medication has side effects that sometime are as bad as the pain. A decision I will have to make in the next hour or so because it has been 5 hours since I’ve taken my last pain pill and I must wait at least 6 hours between pills. So do I take a pain pill and feel drowsy and doped, or do I take my chances on a repeat of yesterday?

Not an easy question.

The Sick And The Recovering.

2011-06-23T07:43:00.000-07:00

Yesterday, Wednesday June22, my wife P. had Gall Bladder surgery. Our son J. came on Tuesday evening to bring his mother to the hospital and back home after the surgery. They left for the hospital at 5:45. By 7:30 AM, P. was brought to the surgery suite. By 10:00 AM J. was talking to the surgeon who told him that P. was doing well and should be able to come home soon.. J. and P. walked in the front door shortly before noon.

Once J. and the lunch lady had P. settled in bed, J. decided to wash, wax and clean his car while his mother slept most of yesterday afternoon away. J. stayed and fixed supper for him and me. After supper and making certain that neither P. nor I needed anything, he took off to spend the evening with some friends watching the cross-town baseball classic, the White Sox playing the Cubs.

I the Sick and P. the Recovering are glad the busyness of the first part of June and that the surgery are behind us. Neither P. nor I are the type of people who neither want nor like to have a lot of attention when we aren’t feeling well, so we welcome the chance today to spend time by ourselves resting and recuperating, P. from having major surgery and I from all the fun and business of the first half of June.

I Almost Missed Father’s Day

2011-06-20T05:15:00.000-07:00

Last Friday P. called my Pulmonologist asking if they had received the results of my latest sputum culture. While P was talking to the doctor she mentioned that I had started to suction bloody sputum. Because the Pulmonologist hadn’t received the final results of the sputum culture and because of the bleeding in my lungs, the decision was made to admit me to the hospital Saturday morning. So Saturday morning C. our oldest brought me to the hospital. After many phone calls and signing a Health Insurance Portability and Accountability Act (HIPAA) form the hospital was able to get my final results of the sputum culture which showed I had no infection. After talking things over with my doctor, hospital nurse and the Respiratory Therapist it was decided that the bloody sputum was a result of being on Coumadin and Tobramycin Inhalation. So I was released and was home in time for supper. So I was home for Father’s Day. All of our children were here yesterday for dinner. A dinner they made so P. was able to just sit and visit as they prepared the meal.

About mid afternoon, our son C. daughter in-law K. and grandson L. left to go home. This means, that our grandson’s visit with us has come to an end. Now I will have no one to watch late afternoon TV with. L. and I had settled into a routine where I would be sitting in my bed and he would sit in my wheelchair and we would watch a couple of different “how do they make things” shows and discuss why they used those methods to manufacture the various products. However, before L. went home he wanted to drive my wheelchair out to the garage so his father could spray a lubricant on the hinges of my foot supports. The entire time L. has been here he has mentioned that the foot supports squeaked when moved up or down. So after our Father’s Day dinner, I sat in the wheelchair and he stood on the squeaky foot supports, with the wheelchair in the slowest speed, L. drove the chair through the house, up and out the garage door, around the tight corners and down the ramp so his dad could spray the lubricant silencing the annoying squeak. Then he drove the chair back up the ramp around those tight corners through the house into my bedroom so I could return to bed.

I will certainly miss spending time with our grandson L. I am not as certain if I will miss all the busyness a 6 ½, the ½ is extremely important, year.

Here L is making a cave.

And when L was bored with GrandPippy, he made a bag mask.

Busy Month

2011-06-16T07:41:00.000-07:00

It has been an extremely busy month around here. On Friday June 3, 2011 my nephew I. and his fiancée came to stay for a couple days. They were here to attend I’s college roommate’s wedding. They headed home Sunday morning and shortly after lunch my college roommate H., who I haven’t seen in 38 years, and his wife C. came. H. and C., who live in Alberta, Canada had taken a month long vacation to attend a wedding on the east coast of Canada. On the way back they stopped by us for a couple of days.

H. has not changed much. He is still the same H. I remember from college. I remember all the many long discussions we had about all sorts of things. I also remember that he taught me how to play Cribbage and how he didn’t like to play as much once I caught on to the game and started to win. They left us Wednesday morning and that afternoon, P met our son and family and brought our 6 year old grandson home to stay with us until Sunday June 19 when his parents will come to pick him up.

For the first 6 days P. was on vacation from work so she and L. went and did a lot of things. However, yesterday P. was back at work so it was just L. and me home alone. Well not exactly home alone, the Home Health Nurse came, the lady came to clean my trach and get me lunch and do whatever else needed doing around here. Then a couple of hours after lunch the Home Aid came to help me shower. However, in the middle when there was no activity I think poor L. was a bit bored. At one point he said that he wished his Grandmother was still home. I don’t think it helped that I ended up having to take a nap after breakfast and again after lunch. However, L. did take a paper grocery bag and cut eye, nose, mouth and arm holed in it to wear as a mask.

Today L. is going over to some friends of ours who have a couple of kids his age. Tomorrow our daughter K. is coming to stay here with me and I am certain L. and his aunt will be able to find lots to do.

Right now as I am in bed writing this he is sitting in my wheelchair watching the Movie “Wallace & Grommit the Curse of the Were-Rabbit” waiting for our friends to come.

Our friends just came and it sounds like they will be going strawberry picking. Hopefully they manage to pick enough so we can have some fresh locally grown berries. Also hopefully, L. doesn’t get too muddy.

What A Yeasty Morning

2011-06-14T06:24:00.000-07:00

This morning I woke up and discovered that all around my tracheotomy stoma itched really badly. When I looked in the mirror, I discovered that I have a yeast infection growing around the site. We have some medicine cream left from my last yeast infection around my tracheotomy stoma so I applied the cream. Tomorrow the home health nurse will stop by to test my Coumadin level and collect a sputum sample for culturing, so I will ask her to contact my doctor about this yeast infection. I have found that it is better to have the nurse contact the doctor for me. It seems that the doctors believe nurses better then they believe me.

I know that when on antibiotics, especially when I am on antibiotics for a long time, I tend to get a yeast infection. So as soon as the doctor orders antibiotic I start eating a yogurt with active cultures to prevent my getting a yeast infection. Sometimes it works and sometimes it doesn’t work. This is one of those times it didn’t work.

Hopefully the Tobramycin will clear up this nasty lung infection without having to be in the hospital for IV drugs. If I end up in the hospital I think I will try to talk the doctor into allowing me to have a PICC line which will allow me to stay home and administer the IV drug myself. However, there is one huge problem and that is the last time I had a PICC line I ended up with a blood clot which hasn’t clear up yet. Well if there is one thing I have learned it is not to borrow trouble so I will just pray that the Tobramycin clears up this nasty infection.

Time to Start Again

2011-06-13T07:18:00.000-07:00

This past Saturday I received an email from L., the lady who over the past number of years has been my Home Bound Librarian, telling me that the time has arrived for her to retire. Over the years, I have always made it a habit to write a short email talking about what has happened in my life since the last time I sent in a list of books I would be interested in reading. One think L. mentioned in her retirement email was that she would be able to keep up with me by reading my Blog MyTippy. One of the original purposes of MyTippy was to document my experience with SpinoCerebellar Ataxia. Another reason was to give me something to keep busy at.

When L wrote that she would continue to follow me on my MyTippy Blog, I thought about why I decided to stop writing. Last October, 2010 I thought that MyTippy was beginning to be about all the lung infections and hospital stays I have been experiencing and that my life had become a life of doing the same thing day after day with my doctor visits every couple of weeks.

Another reason I decided to stop posting has to do with my right hand wrist. When I was younger I broke my right wrist, although I don’t remember breaking it. The Orthopedic doctor told me that the break has healed, but now the calcium that formed around the break is rubbing on a nerve. It was OK as long as I was on anti inflammatory medicine, but once I no longer could take that medicine it would start to hurt while typing.

After more thought, I decided that my life is more than lung infections and hospital stays and aching wrist. So I have decided to begin posting on MyTippy again.

So the first thing I will post is that for the past 4 weeks I have been, once again, fighting a lung infection. This one is a rather nasty infection; of course my doctor told P. that I always seem to get the more nasty/serious lung infections. I think my doctor would have hospitalized me only I really didn’t want to be in the hospital. I really hate being in the hospital I always feel so silly being in an ICU bed when I don’t feel sick enough to in ICU. Of course the hospital and my doctors have a different opinion and think I need to be in ICU because of being on a ventilator.

In my next post I will tell why I didn’t want to be hospitalized.

Back on The Merry Go Round

2010-10-12T09:19:00.001-07:00

What a lot of bother the past 6 months have been. It started out with pain caused by a Urinary Tract Infection (UTI) and as it turned out having the bacteria in my lungs. So I was put on weeks of oral antibiotics which were followed by IV antibiotics. Because I had to be on the IV antibiotics for a long time I had a PICC making it much easier for me to administer the IV antibiotics.

Finally both my Internist and my Pulmonologist agreed that I no longer needed the IV antibiotics, however they both decided that I would keep the PICC in case the infection returned. I had the PICC removed on September 3, 2010. One week later I went to my Pulmonologist and during the office visit I mentioned that the arm where the PICC had been was now a little swollen and extremely tender and I had a lot of pain in the arm. The doctor ordered test which showed that I had some blood clots in that arm. So I was admitted to the hospital and now am on the drug Coumadin.

If that wasn't enough, one week later after being released from the hospital, I started feeling pain which made me suspect I was getting another UTI. I did not call the doctor because there are lots of reasons why I might have a bit of pain. Because I have bacteria that have colonized, I don't call the doctor at the first sign of what I think may be an infection. Also my wife P won a trip to San Diego, CA and I didn't want to start another round of doctor visits just before she left. I wanted P to be able to thoroughly enjoy San Diego. By last week Thursday I knew the time had arrived to contact my Urologist.

Friday October 8, 2010 the home health nurse came to check my Coumadin blood levels and to collect a urine sample. Yesterday the doctor had the results of the culture back which confirmed that yes indeed, I have another UTI. So I am back on an oral antibiotic which means I will need to have yet another round of doctor visits and tests.

Tomorrow I have doctor appointment with my internist and I want to ask him if there is anything else I can to do prevent these UTI. I have a feeling that he will tell me that I (we) are doing everything possible.

I want to close by saying I am glad to be living now because 100 years ago there wasn't the medical knowledge and antibiotics available.

Home Again, Home Again, Jiggety, Jog.

2010-09-15T11:39:00.000-07:00

Yesterday afternoon I was released from the hospital. This morning the Home Health Nurse stopped, did a blood test and called my doctor. The doctor just called and has adjusted my medication dose. I understand that because of my illness and because of all the medication I am on makes it difficult to get the levels of the new medicine correct.

Back in the hospital

2010-09-11T04:52:00.000-07:00

Phil was admitted to Franciscan Physician's Hospital this afternoon Friday September 10, 2010 with a blood clot in his upper arm. It probably came from the PICC line he had in for his IV antibiotic. The doctors disagree about how long he will be there - one says until Wed. and possibly even Friday, the other says he'll be out Monday. I tend to think Wed. is probably what we are looking at.

He's on a heparin IV right now and then they will release him on coumadin. If all goes well, it's not serious. If the clot breaks loose then it could be serious since it is so close to his lung.

P

What A Party

2010-09-01T07:23:00.000-07:00

It was hot and she was in a bed on the second floor of the building. She was worried that the lady in the next bed who was smoking would start a fire and the entire building would burn down with her and her baby unable to escape. That is the story I remember my mother telling me about my birth 60 years ago on August 24, 1950.

If you do the math you will see that I celebrated my 60th birthday on Tuesday August 24, 2010. However, the real celebration was on Saturday August 28, 2010. For weeks and weeks I picked up on the fact that something was afoot. My kids or my siblings would let slip a little something about Saturday August 28. It was almost impossible for me to not figure out that something was up because some of my out of town siblings would stay here and some would stay at my Uncle B. and Aunt C. who live about 6 miles away.

On the Thursday after my birthday, my aid W. stopped by at lunch time with a birthday lunch, a foot long sandwich from Subway. On Friday, S. the lady, who comes in and helps with my lunches and cleans my tracheostomy, brought me some ice cream from the local ice cream shop as a birthday present. Then late Friday afternoon my youngest brother and sister in-law arrived, followed a short time later by my sister, brother in-law, nephew and my three younger sisters walked in. I was already in bed so throughout the evening each sibling would come and sit in my wheelchair and visit catching me up on their family news.

The real activity began the next morning. Early that Saturday morning, at 7:30 if memory serves me correctly, our two sons C. and J., son in-law K. and a grandson L. appeared in the back yard and unloaded the pig roaster from the truck. Then they were off going back to my son in-laws parents to get more tables, chairs and a load of other things that a good picnic would need. After unloading the second load my son J. and son in-law K left returning with the pig. They then dumped bags and bags of charcoal into the roaster and started it.

While waiting for the charcoal to reach the correct stage and heat, they prepared the pig with a salt and pepper rub.

While they were busy outside with the pig, my brother C. started working on his buttermilk coleslaw dressing and my sisters began cutting up the HUGE heads of cabbage that my youngest sister grew in her garden.

They made so much coleslaw that they ended up mixing it up in a cooler. And then my youngest son K. walked in. Now K. works at a dairy bottling plant, so was in charge of bringing all the dairy products. Earlier on Friday he had walked in with enough dairy products to last for a long time. As it turned out, he was one of the busiest people here. He started by making a marinade which he used to marinate pans of tofu which he then baked and refrigerated causing it to firm up. After that he made a double batch of his BBQ sauce for use on the shredded roast pig. Then he, with my brother D. help, started on a mystery dish, which I finally figured out to be my favorite, a German Chocolate cake. Once K. had the cake in the oven, he started making batches and batches of his Jalapeno Corn Bread. Once again my brother D. and his wife N. stepped in and helped him.

In fact all of my siblings helped with the food preparation. Without their help I doubt we would have been able to have such a successful party. After lunch, my oldest son C. started washing bunches and bunches of collard greens. While they were soaking in water, he cleared the patio and set up my turkey fryer which he used to cook the collard greens, there were too many to manage on a stove top.

It was now late afternoon and the level of activity became more and more busy, my daughter K. and a couple of her aunts started covering the picnic tables and placing them in the shade. Some of the other aunts helped daughter in-law C. cut up vegetables and assemble the tofu Kababs which were then grilled. My son J. and son in-law K. took the pig out of the roaster and placed in on a table. Then they, son K. and nephew J started to remove the meat placing it in large pans which were placed over Sterno Burners keeping it warm. While the guys were doing that C. and grandson L. were busy with the collard greens and putting loads of bottled water and cans of pop in one of the small kiddy wading pools and pouring ice over everything. At the same time those guys, not already busy doing something, started preparing the corn, which had been soaking in preparation for grilling. Now I know that I haven’t told this story correctly and I may have forgotten to mention what everyone was doing, but I wanted to show how much work and how busy everyone was in order to bring off a successful party.

At 4:00 PM people, lots and lots of people started arriving. Soon it was time to begin eating so P. asked everyone to come inside in order to pray and sing me the traditional Happy Birthday Song.

So the party began.

I stayed indoors with my meal while everyone else was outside, however throughout my meal almost everyone managed to come inside and visit with me for a short while. I soon was unable to talk and so had to use my computer and type in order to communicate. Finally while the party was still going strong I was so exhausted I ended up in bed. It was a WONDERFUL party. But as with all parties it came to an end and I went to sleep.

By Sunday mid-morning, my siblings who stayed here left for their homes and the boys showed up to return the pig roaster and everything else they had borrowed to my son in-law’s parents. Before they left I had them help me back to bed. For some reason I was exhausted but what a great way to become exhausted?

In closing I would like to thank everyone who helped make this a GREAT 60th birthday party.

Here We Go Again

2010-07-14T05:58:00.000-07:00

This is a letter P sent our family and friends after I saw my doctor yesterday. I have been fighting a number of Urinary Tract Infections and Prostatitis for the past 8 to 10 weeks and as you will read I have yet another UTI and now a lung infection.

As most of you know on June 30 Phil had his last dose of Gentamicin. At that time we knew he had an infection in his lungs that was sensitive to Gentamicin but because of the changes we were making in Home Health agencies, it was decided to take him off all antibiotics and retest him to see what was happening.

Last Friday, we found out that the urine culture had come back with some new bacteria that he hadn't had before. Yesterday, the doctor's office called and said the doctor wanted to treat it with 2 oral antibiotics. Today we had an appointment with the doctor. It seems the new bacteria is enterococcus faecalis which is a very stubborn, antibiotic resistant bug.

Tomorrow he has another sputum culture done to see what is going on with his lungs. We should hopefully have some results on that by Friday. After they get those results, they will decide whether to remove his PICC line. It has been in 5 weeks and after 6 weeks, it needs to be removed. If he still needs IV antibiotic, he would have to have a new line put in.

This is getting very discouraging. The doctor said if this round of antibiotics (3 weeks of Macrodantin and Dycocycline) doesn't do the trick he'll need to see a urologist. It reminds us of the first year he had his trach when he had pseudomonas a. that kept recurring.

He's not feeling well and has been dizzy for the last 10 days. That hasn't stopped him from trying to get people to give him ice cream which he needs to avoid while on dycocycline. Please pray that nothing else is going on and that whatever all the infections are will finally clear up.

P

Ah Vacation

2010-07-06T08:49:00.000-07:00

P was on vacation most of this past week. I must say that it was nice to have someone else rattling around the house for a change. P didn't do much on her vacation except relax and work on the 2000 piece puzzle we bought her for her birthday.

We did go out for lunch one day. P had received a gift card, from work for going above and beyond, to a local restaurant so one day we went out for lunch. After a leisurely lunch we drove south of town to a friend to drop something off. Our friend lives in a nice house but to get there you have to drive past some farm fields. So that was a nice way to finish a wonderful time having lunch with P. It's has been a long time since P and I have been to a restaurant.

At the end of P's vacation one afternoon we went to a local ice cream parlor. Last Christmas I received a present of a gift card to this ice cream parlor because the kids know I really enjoy the ice cream there. So once again P and I enjoyed spending time together slowly eating ice cream while sitting in ice cream parlor. It reminded me of when we were in college and the two of us would walk the couple of blocks to another ice cream parlor to get some ice cream. I really enjoyed those walks because that was the time when P and I were just starting our live together. We would walk holding hands and talking about many things. Things that we liked, things we didn't like, things that we wanted, things we didn't want and we talked about how we wanted to raise our family.

Now when we were having lunch and later ice cream we talked about how things had turned out. Some things have turned out how we wanted, some things have turned out differently and some things turned out in ways we never imagined.

Ah vacations. It is certainly nice to have the opportunity to get away from the pressures of work, to relax and have time to reminisce about the past and talk about the future.

How I Feel

2010-06-29T06:29:00.000-07:00

Last Thursday I had a sputum sample taken for culturing and yesterday my Pulmonologist called to tell me that I now have a lung infection. She did mention that the bacteria is sensitive to the same IV antibiotic I am currently on for the UTI and Prostatitis I have been fighting for the past 9 weeks. So my Pulmonologist and Internist, who work in the same medical clinic had a meeting of the minds and decided to allow me to complete the current course of IV antibiotic treatment which is finished tomorrow and then after two days to take another urine and sputum samples for culturing. So by next week Tuesday my doctors will make a decision how to fight this new infection.

My mother had an uncle A. who had been in a farm accident and confined to a wheelchair. I may have mentioned Uncle A. before in this Blog. We would always visit Aunt H. and Uncle A. every time we went to Michigan. When visiting Uncle A. I would wonder how he must feel being stuck in a wheelchair and stuck in the house all the time. Of course a young boy hasn’t had enough life experiences to understand the frustrations and maybe anger Uncle A might have felt.

For most of my life, my mother suffered with paranoid schizophrenia. When I was living at home, I never thought much about how my mother must have suffered. Most of my thoughts, cares and concerns were focused on myself and my plans for my life. However, now with the eyes of someone who requires more and more care, I have turned my mind’s eye back toward my mother and uncle. I now have a much better understanding of how they may have felt being confined to either a wheelchair or a prisoner of their own mind.

For the past three and a half months, I have had a nurse from a Home Nursing Agency. The first three months were not bad; I had a male Registered Nurse (RN) as my nurse. However, when he took a job with a hospital, I was assigned a Licensed Practical Nurse (LPN) and I also was diagnosed with Prostatitis and had a Peripherally Inserted Central Catheter (PICC) in order receive the IV antibiotic and to make drawing blood easier.

It was this change in my health that really made me think about how trapped Uncle A. and my mother might have felt. Suddenly the nurses talked to P about me as if I wasn’t there. I also discovered how difficult it had become for me to take charge of my own health. The Home Nursing Agency made decisions about where to bring blood draws for testing. When I suggested they bring it to the clinic where my doctors practiced, they wouldn’t acknowledge that I had even talked to them. They would take the blood draws to any number of different locations. Now I am receiving phone calls from these different places asking for insurance information. Even though the Home Nursing Agency said they would take care of providing that information. Then my doctor and the pharmacy would not receive the results in a timely manner, so P would spent time while at work trying to find out which lab had my latest blood draw and what the results were. Because of the extremely poor service I received from the Home Nursing Agency, I made the decision to return the hospital based home care I had been receiving before changing to the Home Nursing Agency that was providing the 8 hour a day care I currently receive. My doctor told us that he didn’t want me to change health providers in the middle of treatment. I understand why he didn’t want to have write new orders for the new home care and why it might not be wise to change in the middle of a course of treatment. But the Home Nursing Agency we currently are using is making mistakes, not following or not understanding doctor orders, not answering me when I question them about what I consider errors, and which I later find out to be errors. I now feel trapped in a situation I don’t seem to have any control over.

It’s this feeling of loss of control that bothers me the most. I wonder how Uncle A. and Mom felt about the loss of control of their life. I know how I reacted to this feeling. The other day when my pulmonologist ordered a sputum culture and the Home Nursing Agency responded by telling the doctor that they didn’t have the necessary sputum collection container, I just lost it. I called the home agency and started yelling at the first person who answered the phone. I continued my rant until I was transferred to the office manager. It took a lot of talking on his part to calm me down. I did tell him that when two of their nursing supervisors had proved to be completely useless when it came to sourcing items, items that the hospital based home care always seemed to have with them, I had gone on the internet and found sources myself. I also mentioned to him that I wondered about the statements his nursing supervisor made when she first came and talked to us about having them provide home care services. I accused him and his people of being nothing more than liars saying anything to get a new client and then doing none of the things they promised once we were trapped with their services.

At this time in my disease, I have such a feeling of helplessness, such a feeling that I have lost an important battle, the battle of control over my freedom, and such a feeling of not being able to regain control. Of course as I always tell people that I am certain that things will get better, they always do.

Changing Home Nursing Agency

2010-06-28T07:53:00.001-07:00

This past Thursday morning we received a phone call from the Home Nursing Agency telling us that they had fired my nurse. I was so happy I think I would have danced if I could have gotten out of my wheelchair. When the agency asked about sending a replacement nurse we told them not to bother. I really wasn’t up to training yet another nurse and P is on vacation this week so there really isn’t the need for help this week.

Because of all the problems we have had with this Home Nursing Agency these past 4 weeks while I have been on the IV antibiotic, which is the time we really need the services, we have decided to change back to the original Hospital Home Health intermittent skilled nursing service. The hospital does not provide private duty nurses to stay with me, but we have hired a young lady from our church to come in for a couple of hours to help with my lunches, cleaning my trach, and doing light housekeeping such as changing my bedding.

Now that we have experienced both types of nursing services we feel, that at this time, having intermittent skilled nursing services and having some help during the middle of the day is the best solution. P and I both agree that having a Home Nursing Agency provide a private duty nurse during the hours P is at work has been an important learning experience. Should I need a private duty nurse in the future, we now have experience and will ask more pointed questions about exactly what services the agency provides.

As with everything in life we have learn a lot from this experience.

What a Month

2010-06-17T08:08:00.000-07:00

Earlier this month my doctor decided the time had arrived to put me on a much stronger IV antibiotic then he has been using to treat a stubborn infection. On Friday June 4, 2010 he admitted me to a local hospital; see my blog Note to Self. That just seemed to place the month on a busy footing.

This past Tuesday I had a doctor appointment and the doctor decided to keep me on the IV antibiotic for 14 more days. So then there were phone calls to the nursing organization and pharmacy that is supplying the IV antibiotic. This change necessitated additional blood work ½ hour before starting the IV and ½ hour after the IV finished. In the state I live in the law is that when an in home patient has a PICC only a Registered Nurse, patient or patient family can administer the IV or do blood draws using the PICC.

Yesterday morning, the Home Nursing Agency’s RN called and told me that she was on her way because my doctor had ordered a stat blood draw for the morning to insure that he receive the results while he was still in the his office. Once the RN arrived she insisted that I was to receive my IV antibiotic after she did the blood draw. I mentioned to her that when I had asked the doctor about moving my IV time from 4:30 – 5:00 PM to 8:30 – 9:00 AM, he told me that in order to safely do that he would have to order a couple of half doses. I questioned the nurse about the safety of repeating a full dose so soon after my last full dose, especially after my doctor told me different. The nurse told me this was what the new orders they had received from my doctor said to do and brushed my concerns aside, drew the before blood draw and started the IV.

Late yesterday afternoon, I received a phone call from the Home Nursing Agency nursing supervisor telling me that the first blood draw’s results were normal. The nurse also told me that they had not understood what my doctor was actually ordering and that my IV should still be at the 4:30 – 5:00 PM time. I do not know what the results of changing my IV time will be; I hope this doesn’t increase the treatment time.

This morning I received a phone call from the Home Nursing agency nursing supervisor telling me that the second blood draw, testing for Peak level of the antibiotic in my system was rather high. I told the nurse “Of course it is. The RN gave me a full dose of the antibiotic 15 hours after my last full dose.” I then called the pharmacy to alert them to what had happened. I wanted them to know that there was a reason for the huge increase in the IV levels in my system. Now I am worried that when my doctor receives the test results, he will want to once again lower the dose. I would call his office except today is his day off and I don’t want bother him. Hopefully if he questions the results someone will explain to him what happened. If he wants to lower the IV dose, I am going to have to call his office making certain that he has the complete story.

I believe the time has come to replace this Home Nursing Agency. I no longer feel safe in their care. I never had that concern with the first nurse Chuck. However, with this new LPN home nurse and with the new visiting RN, I no longer have any confidence in them.

The Argument About Harry and Tom

2010-06-11T09:34:00.000-07:00

Yesterday afternoon my niece M. and her husband T. and girls C. and K. stopped for a visit. They were on the second day of their vacation to visit my niece B. M’s sister in Michigan. The girls ages 8 and 5 reminded me of when our kids were that age. They are full of curiosity about many things.

This morning I showed them the book I wrote about Harry and Tom the Michigan black bears who live in their underground house by the trees in our back yard.

After breakfast they sat on my bed and C read a couple of chapters to her younger sister K. After reading a couple of chapters, C was tired of reading. I must say that for an 8 year old she reads well.

Later in the morning the girl’s mother started a Veggie Tales video on my TV and the girls sat on my bed and watched the entire show. I must admit that I was so exhausted I slept through part of it.

When was time for them to leave and head to their next stop on their vacation, the two girls came into my room and the oldest C told me that she knows that Harry and Tom aren’t real. However, the youngest told me that she knows that they are real. I told her that if they would come in the winter time, I would show her the smoke that comes out of Harry and Tom’s underground house’s chimney. I didn’t tell her that it really isn’t smoke rather it is the steam from the storm sewer.

I found it refreshing to see the world through the eyes of these two girls.

Note To Self

2010-06-08T08:08:00.000-07:00

I think I’ve learned something over these past several days and as a result will make this note to myself. “Don’t start this type of hospital stay on a Friday afternoon.”

For about 8 or 9 weeks, I have been fighting a Urinary Tract Infection. My doctor would have a culture showing the infection was sensitive to one antibiotic so he would place me on that antibiotic and three to five days after I finished it I would take another sample which the laboratory would culture to see if the infection was gone and if not what antibiotic it was sensitive to. This cycle went on as I have said for 8 or 9 weeks. This past Friday afternoon my doctor decided the time had arrived for placing me on an IV antibiotic.

I was admitted to a local hospital at 2:30 Friday afternoon and taken to a Medicine Surgery or Med/Surg room. However, once there and the nurses discovered I was on a ventilator, the Med/Surg nurses didn’t feel comfortable caring for me because of my being on a ventilator. By the time everything was figured out and I was brought down to the ICU floor it was past 5 PM. Because of the hour and it being Friday all of the people who would normally take care of arranging with my nursing agency and with a local home pharmacy making certain I would receive everything I would need to administer the IV antibiotic once I was discharged had gone home for the weekend. So the ICU nurse in charge of my care spent most of Saturday and Sunday morning arranging everything and I was discharge at 2:30 Sunday afternoon.

My wife P also spent most of the weekend talking to the nursing agency and to the local home pharmacy’s Indianapolis office, which covered for the local branch on the weekends. However, on Monday morning we found out that everything we thought was arranged and in place was not in place. The pharmacy had questions about the method, using a Peripheral Intravenous Line (PIV), for the length of time my doctor ordered. The pharmacy also requires a blood test every 3rd day I am on this antibiotic to check that the dose is actually the correct dose. Also the doctor requires a different blood test every 3rd day to check on my liver functions. It turns out that while this drug is a powerful antibiotic, it also can cause serious side effects. Because of all of these blood draws and the fact that the PIV would have to be moved every 3rd day, the doctor has decided that I will need to have a Peripherally Inserted Central Catheter (PICC) line inserted today. I need to be at another local hospital at noon for a scheduled 2:00 PM procedure to insert the PICC.

Yesterday evening P told me that when the number of phone calls reached 20 she stopped counting the number of phone calls she either received or made about this yesterday. If this wasn’t enough busyness, the nursing agency had to send out a supervisor nurse to reinstate me as their patient because my hospital stay had been longer than 24 hours. The nursing agency told me that the supervisor nurse would have to come and complete all the paper work before my new nurse would be allowed to come, my other nurse has taken a job somewhere else. Finally at 11:30 my new nurse arrived. Unfortunately by this time it was too late for P to show the new nurse what and how I like my lunches. Now with my entire schedule all out of sequence the afternoon began. Around mid afternoon, the nurse and I managed to get my shower out of the way which was a good thing because shortly after I was back settled in front of my computer a huge box of IV Antibiotic supplies arrived.

For the second time the supervisor nurse arrived to start my PIV and to begin my first dose of antibiotic. It took about 45 minutes to get everything set up before starting the IV which takes one hour to finish. By the time the antibiotic was finished and I completed my last nebulizer treatment of the day I was exhausted and ready to go to bed.

After spending such a busy day, I spent a relaxing evening watching some TV shows and visiting with my sister N, who with her family, is visiting. However, with all that is going on with my health situation, I haven’t had much time or energy to visit.

Then to top it all off, I couldn’t sleep last night. Every time I would fall asleep I would wake up about 10 minutes later. Then I would start thinking about the past couple of busy days, thinking about having to get use to a new home nurse, wondering how many things I would have to change, wondering if this nurse would be easy to get along with, and wondering how I would react if she made suggestions that I disagreed with. Finally in the early morning hours I managed to get about 2 ½ hours of sleep. However, now in the light of day, I am certain that all of my concerns will turn out to be of no concern.

So as I said at the beginning “Don’t start this type of hospital stay on a Friday afternoon.”

Changes Changes Changes

2010-05-26T10:42:00.000-07:00

Sometimes change is a good thing.

About 8 weeks ago, two wisdom teeth started bothering me. They both hurt a lot causing me to take Tylenol every 6 hours to help relieve the pain. So I scheduled a visit to my dentist who determined that the time had come for those teeth to be removed. It took two weeks before I could get in to see the Oral Surgeon so I continued to take the Tylenol every 4 to 6 hours because the teeth were bothering me more and more. When we arrived at the Oral Surgeon and he agreed that the teeth needed to be removed, he told me that because when I had had one other wisdom tooth removed my Neurologist insisted it be done at the hospital. These wisdom teeth would have to be removed in the hospital as well. However, I explained to the Oral Surgeon that I had spent most of the day at the hospital for what turned out to be a less than 5 minute tooth extraction. The Oral Surgeon said that he would talk to my Neurologist and see what they could work out so that maybe I wouldn’t have to have the procedure done at the hospital. Especially because it appeared that both teeth could easily be removed using only local anesthetic.

After waiting about a week without hearing from the Oral Surgeon my wife P called their office and was told that the surgeon was still waiting to talk to my Neurologist. When P called the Neurologist office, the Neurologist staff told P that I would have to have the tooth extractions done at a hospital because of my health condition and that they had told the Oral Surgeons office that. When P asked why the Oral Surgeon office told us that the surgeon was still waiting to speak to my Neurologist they just repeated the statement that they had spoken to his office and told them I needed to be in the hospital for the procedure. A couple days later without hearing from the Oral Surgeon’s office P called them again and was once again told that the surgeon was waiting to speak to my Neurologist and when she called the Neurologist office, she was told that they had spoken to the Oral Surgeon’s office. After about 2 weeks of this, P came home one Thursday evening and told me to see if I couldn’t get the Neurologist and the Oral Surgeon to talk to each other.

On Friday morning I called the Neurologist office and asked to speak to my doctor’s nurse and was put through to the nurse’s voice messaging system. I left her a rather sternly worded message about being tired of getting the run around and that I would be calling her every 2 hours at 10:30, 12:30, 2:30 and if by 4:30 that Friday afternoon my Neurologist hadn’t spoken the Oral Surgeon, I was getting someone to drive me, in my wheelchair, with my ventilator and with enough oxygen, to their office on Monday and I would sit in their waiting room until my Neurologist talked to my Oral Surgeon. I also mentioned that I wasn’t impressed that their lack of action caused me, the ventilator dependant person to make this phone call. After leaving that message, I called the Neurologist office back and asked to speak to their chief surgeon or their office manager and left the same voice message on the office manager voice messaging system. About one hour later I received three phone calls from the Neurologist nurse, the office manager and one other person who I wasn’t certain what their responsibility was, all telling me that my Neurologist would talk to my Oral Surgeon that morning. Then shortly after lunch the Oral Surgeon office called telling me the two doctors had spoken to each other and could I come on Tuesday and have the teeth extracted in their office.

Even though this took a long time and a number of phone calls two of which I ended up making, my oral surgery was able to be done in the Oral Surgeon office instead of a hospital. This Change saved me money and it saved me a day at the hospital. In fact, I left the house at 1:40 PM and returned home a little before 3 PM. This was a good change.

A couple of days ago my nurse C. told me that he had accepted a job with a local hospital. It is a good move for him, one I am glad that he is taking. On the other hand this means that I will now have a new nurse. Having a new nurse means that I will have to get used to another person, I will have to get used another person’s methods of doing things and I will have to get used to another person’s personality. However, this is one of those changes that is not all bad.

A couple of days ago I received my order of trach collars to find that it contained 30 collars. For a long time I have ordered 40 trach collars at a time and sometimes use more then one a day, depending on how dirty they become. Imagine my surprise to find out that our Medical Supply Company has changed my profile limiting my trach collar order to 30 collars per month. When we called to question this change we were told that it was done because of our insurance company was refusing to pay for more trach collars a month. I have trouble believing this because the insurance company has always paid for everything I have ordered. I wrote our insurance company asking them if they have placed a limit on my medical supplies and they wrote back stating that they have not placed any limits on my medical supplies.

Then yesterday we received our order of trach cleaning kits. When we opened the box we found that they were the wrong cleaning kits. However when we called the Medical Supply Company office the person we talked to told us that my order profile had been changed and that there wasn’t anything he could do about changing the profile back again. When we pushed for a reason why my profile had been changed and we had not been notified, we were once again told it was because of my insurance company not paying for the kits I have been receiving for the past 5 years which the insurance company has always paid for.

First thing this morning, I wrote an email to the Medical Supply Company home office detailing this course of events. In my email I did not use offensive language; I stated what had happened to me and then made a number of requests. I requested my profile be changed back its original products and order amounts. I requested that they at their expensive send me a detailed report of all of my insurance claims, Items billed and payments made in order to verify that my insurance company has been paying or has been refusing to pay as I had been told. I ended the email by requesting a meeting with local Medical Supply Company manager.

I sent the email shortly after 8:00 AM to the Medical Supply Company home office and at 11:00 AM the local Medical Supply Company manager called to tell me that the wrong Trach cleaning kits had been sent by mistake and that the correct ones would be sent out today. The manager also changed the amount of trach collars I could order at one time back to the shipping level they were last December.

I have no idea who made the mistake; I have no idea if my profile had been changed as we were told yesterday. I am just glad that I will once again be receiving the trach cleaning kits I have always received.

With all of the issues with medical supply companies, billing mistakes, insurance payment mistakes, Doctor Office appointment mistakes, doctor office billing mistakes. I am getting rather good at writing letters explaining what I think are mistakes, and requesting corrective actions be taken. But I must say that the number of problems I have experienced dealing the medical provider system doesn’t put it in a good light. In my opinion, the medical provider system needs to work harder at improving their level of service. Do you have any idea the amount of wasted dollars these mistakes must cost everyone? Also the amount of pain and suffering these constant mistakes cost the patients.

Mexican Fiesta

2010-04-28T09:47:00.000-07:00

A couple times a year members of my family and my younger brother C get together here and spend a Saturday preparing a delicious meal. This past Saturday my two brothers and sister and one of her son’s came to visit and along with my sons C and J and son in-law K spent the day preparing a Mexican Fiesta meal.

These weekends don’t just happen spontaneously; they take a long time to come together. We start by first deciding what the theme of the next weekend get together will be. Then once we have decided on a weekend we start planning the meal, which often requires hundreds of emails, and having my younger brother and son J look at each other’s recipe ideas. For this past weekend with the Mexican Fiesta theme we set a late January date, but decided that was to soon after all the business of the holiday season. I then thought we could get together toward the end of March, however, my nephew had to work that weekend, and my brother was moving to a different house. We finally settled on this past weekend and started putting together the menu.

Friday April 23, 2010 was the day when my family members from Iowa and my son and grandson from Madison would arrive. My younger brother C arrived late Friday afternoon, and after he carried two coolers and lots and lots of bags of groceries he and I had supper together. After supper, as C was just beginning some prep work, my younger sister, brother in-law and nephew arrived. Shortly after my wife P arrived home from work, my son walked in carrying our grandson, who has fallen asleep in the car, downstairs to a bedroom and put him to bed. Finally just before midnight my older brother and sister in-law arrive.

Saturday morning son C and grandson L made us guys a breakfast of Gingerbread waffles served with either honeyed butter or whipped cream. While the guys enjoyed the breakfast of waffles, my wife P, daughter K, sister M and sister in-law N drove to Chicago to meet with our daughter in-law C and go out for breakfast. The ladies spend most of the day touring our kid’s condos in Chicago and our daughter’s home in a suburb close to us. They also managed to stop at a block long garage sale arriving home mid afternoon.

Once the kitchen was cleaned and the breakfast item put away brother C, son J and son in-law K started preparing the Mexican Fiesta. My brother had some homemade prosciutto which he needed to slice extremely thin so he asked if my son in-law would be able to borrow the deli style meat slicer from his uncle. We don’t like to borrow this meat slicer unless we are going to slice a lot of meat, so the boys and I decided that this would be a great time to purchase meat to use for making beef jerky later this year. This way we wouldn’t have to bother K’s uncle when we make the beef jerky later this year. After doing a lot of research we decided to let my brother C pick up the 20 lbs of the meat we would use to make the jerky. He was able to purchase it for $1.00 less per pound then any place we were able to buy it locally.

So Saturday morning the guys sliced my brother’s prosciutto and the 20 lbs of beef. Because we were going to freeze all this sliced beef and didn’t want it to get freezer burn, my son in-law K and nephew J went shopping for a vacuum sealer. I am always amazed how I continue to accumulate items that I don’t use because of my illness. I now have a turkey fryer, a dehydrator, a smoker and now a vacuum sealer. I admit that I don’t own all of these; I own part of these items, while other members of my family own the other half of the item. However, I enjoy being able to help with the purchase of these items so the other can make use of them. And often they use these things here, so I get to enjoy watching them use them.

The guys spent the rest of Saturday preparing the Mexican Fiesta. If I remember correctly, they made the following:
Son J made:
Red Snapper Ceviche with Jalapeno and Red Onion
Octopus Salad
Pico de Gallo
Guacamole

Nephew J made:
Albondingas soup

Brother C made:
Chicken Empanada with Chorizo, Raisins, and Olives
Using this recipe for the dough
Smothered Mexican lasagna
Pickled Mexican vegetables

Wife P made:
Brazilian Flan

One of the things I really like about these weekends is the opportunity they give everyone to visit. The conversations are free and wide ranging.

The Small Frustrations

2010-04-09T05:29:00.000-07:00

A couple weeks ago I wrote "The Time has Finally Arrived". In that post I wrote about how the time has arrived when I need someone here when P is at work. I now have a nurse here for 3 days a week when P is working on Monday, Wednesday and Thursday. On Friday an Aid from a different organization is here for 4 out of the 6 hours that P works.

The nurse is a man about my age, he was a medic based in South Korea during the Vietnam war. After serving in the military he completed his nursing schooling and has worked as an Emergency Room nurse until recently. I get along well with C, we both have the same type of humor and find that we have enjoyed many of the same interests. The Aid who is here on Fridays is a young lady who is a Certified Nurses Assistant (CNA) and works as an Aid from 7 PM to 7 AM at one of the local hospitals.

While it is nice to have the help while I am home alone, it does have its small indignities. On those days that nurse C is here, he has to be seated where he can see me at all times. So this means that he sits in the same room with me. Have you ever had someone sit in the same room with you for 8 hours a day? It can become a bit exhausting to say the least. Also it is his organization policy that he takes my vitals twice a day, once at the beginning and once at the end of his shift. You must remember that I am in basic good health, I just have a Foley, can't walk, or breathe by myself and so have to be in a wheelchair and connected to a ventilator. However, I do not have pneumonia, nor do I have a lung, urinary tract infection or on any antibiotics. So having someone take my temperature, blood pressure, listen to my lungs, take my pulse, feel my ankles to see if they are swelling seems to me to me rather intrusive. Also any time I attempt to put a blanket over my feet, C jumps up and will start to fuss over me, or after I've taken a drink C rushes over to check if I need more water. Today he asked the physical therapist if I should be doing the weight exercises I do with my left arm, because of a torn rotator cuff, with my right arm. There is nothing wrong with my right arm. I am the type of person who when sick doesn't want anyone to tuck blankets around me. I just want to be left alone. I have been dealing with handicap almost my entire life so when I need help, I will ask for help. However, for the most part C is an excellent nurse. He knows his job and is good at it. I do appreciate the fact that he helps me shower and get dressed, cleans my tracheotomy and makes my lunches. I just thought that after he has being here for a month, I would be getting use to all the other unasked for and unwanted attention. However, I think it is beginning to bother me more, not less.

I find similar frustrations with the aid on Fridays. While she doesn't spend time sitting in the same room with me, she seems to bother me more. Don't get me wrong, she is extremely helpful, doing laundry, folding and putting the clothes away, washing up things in the kitchen and running the vacuum. However, she doesn’t seem willing to ask questions. So while she may fold clothes it is often a challenge to figure out where she puts them when putting them away. I have decided that on Friday when she is here, either P or I will have to dish up supper before P leaves for work. Last week she didn’t understand the note P left her and so brought me dry reheated noodles and part of a leftover chicken breast. Then when I told her what P had wanted her to use as a sauce with chicken to pour on the noodles, she said the container P mentioned in the note had some thing else written on its top. I asked her to reheat the correct food which she did, only when she brought it to me she told me that she had salted it. The problem was that the dish already had enough salt. It was so salty to the point of being almost too salty.

Now before everyone jumps on me and tells me I should be thankful for the help, I want to reassure everyone that I am thankful. However, one of the purposes of this Blog is for me to write about how this disease is affecting me as I progress through it. These are just a few examples of the small frustrations I deal with each and every day.

The new Wheelchair has arrived

2010-04-03T08:36:00.000-07:00

Monday March 22, 2010 my son J. drove me to the Rehab Tech facility in Naperville, Illinois so I could show Rehab Tech’s fabricating technician what medical equipment needed to be mounted on a shelf on the back of the new wheelchair. It was long morning, we had a 10:30 appointment and the Rehab Tech facility was an hour’s drive from my home. Once we arrived and the fabricating technician and Rehab Tech’s service technician, who had met me at the Rehab Institute of Chicago (RIC) and ordered the wheelchair, arrived we were only there for about an hour while they measured and discussed how to mount everything. We asked them how long it usually took to get an appointment at RIC for the final fitting and adjustment of the wheelchair and were told that it usually took about 3 weeks. Imagine my surprise when I received an email on Friday afternoon, March 27, 2010 stating that there was an appointment slot open on Thursday April 1, 2010 at 1:00 PM.

Thursday morning April 1, 2010 at 11:30 we left the house and drove to RIC for the fitting and adjustment session. The Wheelchair needed a lot of adjusting; however the Rehab Tech technician just worked his way through each adjustment. Some of these adjustments required the use of a drill to drill additional holes and the laptop tray mounting bracket to extend it past my extending stomach. At 3:30 we were ready to leave RIC; I in my new wheelchair and my nurse Chuck pushing my old wheelchair.

Once we arrived at the van I was a bit apprehensive wondering if the new wheelchair would fit in the van. As I slowly drove up the ramp I realized that I wouldn’t have to duck my head or do anything to adjust the tilt or recline of the wheelchair in order to drive the wheelchair into the van. After some turning and going back and forth I was able to get the wheelchair positioned it the spot I normally sat while in the van. Then P had to crawl around using the tie down straps to secure the wheelchair to the van. We have contacted the van after market manufacture and have order the kit that will allow us to use the power locking system to secure the new wheelchair to the van, but until it arrives and is installed, we will have to use the tie down straps.

When we arrived home, I was so exhausted by the entire trip, I went to bed for the night. When I used the old wheelchair, I would transfer from the wheelchair to the recliner in the den. So I would spend my days in the recliner in the den. P and I talked and talked about how we would be able to move the two pieces of furniture, the recliner and the couch, around to make room for me and the new wheelchair. We finally settled on having me stay in my bedroom. P starts work later on Fridays of course that means she also works later in the day. But because she started work later we were able to make further modifications to my bedroom to accommodate the new wheelchair. Earlier in the week my son C and Grandson L had moved a lot of items around in my bedroom, so we have only had to make minor changes. Staying in my bedroom isn’t as bad as it sounds. I am now able to look out of windows on the front of the house giving me a different view after a number of years looking out the den windows. And I have a television in my bedroom and it is in a better position allowing me to be doing something on my laptop while watching baseball. This is a huge improvement because the position of the recliner, the television and the window in the den, there was such sun glare from the window that I would get eye strain trying to watch an afternoon baseball game.

We finally settled on having me stay in my bedroom. This isn’t as bad as it sounds. I am now able to look out of windows on the front of the house giving me a different view after a number of years looking out the den windows. And I have a television in my bedroom and it is in a better position allowing me to be doing something on my laptop while watching baseball. This is a huge improvement because the position of the recliner, the television and the window, there was such sun glare from the window that I would get eye strain trying to watch an afternoon baseball game.

I am hoping that being in the wheelchair all the time will help with my painful left shoulder. The exercises the physical therapist is having my do seem to be helping. Also now that I no longer have to put weight on that shoulder when using a walker to transfer from wheelchair to recliner and back again I am hoping for more shoulder improvement and less shoulder pain. The new chair also comes with a seat belt which I find helps with the problem of sliding down in the chair and having to use my arms to push myself back up in the chair. While the new wheelchair comes with a head support, I have found I need a pillow for additional support on my neck.

I am certain that as time goes on and I get more and more used to my new wheelchair and get used to being in a different room I will make changes to where I have items on the small table next to the wheelchair. P and I have already made a number of changes making life easier for me in this new chair and different room. I am really pleased with the way everything is working out so far.

Things Continue To Fall Apart

2010-03-13T05:40:00.000-08:00

At some point in my past I broke my right wrist and now the healed break has calcified and rubs on a nerve causing me considerable pain. This wasn't a problem when I was able to take arthritis medicine. However, taking the arthritis medicine has caused bleeding in my stomach so a couple of years ago the doctors told me no more arthritis medicine. The pain medicine I now take for the neuropathy pain helps with the arthritis pain. However, it doesn't help with the pain in my right wrist. The doctor recommended I wear a brace on my right wrist which has really helped because it doesn't allow me to move my wrist preventing the calcified break from rubbing on the nerve.

Also, because of all the hip operations I have had and because of the Spinal Cerebellar Degeneration I used cane in my left hand for 20 years. Using the cane has caused a narrowing in my left shoulder joint. And because of the trouble I have with my right wrist, I have favored my right wrist when pushing myself up in my recliner and wheelchair. Over the years, I have noticed more and more pain in my left shoulder, and recently it has gotten extremely painful. So painful that I now find myself favoring my left arm putting more pressure on my right wrist. A couple of weeks ago I saw my doctor who gave me a Cortisone shot in the left shoulder and ordered X-rays of the left shoulder. This past Tuesday the doctor called to tell me I have a badly damaged Rotator Cuff. And because of the Spinal Cerebellar Degeneration I am not a candidate for Rotator Cuff repair surgery. The doctor did order Physical Therapy which will start this coming week.

Even though my shoulder is extremely painful, I do find it rather fascinating how our bodies are created. Used as a complete whole our bodies work well. Every part of our body seems to work with every other part and when one part is damage the other parts will carry the extra work. However, eventually the extra work causes additional problems. I am not certain how this is going to end up. I am hoping the Physical Therapy will strength my shoulder and help relief the pain.

The Time Has Finally Arrived

2010-03-08T15:30:00.000-08:00

Four and a half years ago when I first talked to my doctors about needing a tracheotomy and ventilator to aid my breathing, the doctors all told P and I that once I had the tracheotomy and was ventilator dependent, I would require someone with me at all times. However, because of the costs of having an aid here while P was at work, I've managed to stay home by myself. At first I was able to do the laundry, make the evening meal and go for long walks, using my wheelchair of course. During the first two years using the ventilator we took a number of vacations, one flying to Las Vegas. On September 17, 2007 I even participated in a 5K event. And I was able to take an active part in leading the Mini-Church that meets at our house.

I slowly became less able to do these things as the disease progressed and I became weaker. At first, I stopped doing the laundry but would still be able to fold the clothes. I no longer had the strength to prepare the evening meal but would still be able to take some prepared meal out of the refrigerator and place it in the oven. However, during the past 12 months both P and I have noticed that I tire much easier and it was becoming more and more of a problem for me to even fold a basket of clothes and getting into my wheelchair to even take something out of the refrigerator and place it in the oven. Now I often have to take a nap after getting up in the morning and having breakfast and doing normal morning things and again when the aid comes to help me with a shower. No more vacations, no more 5K's and I am no longer able to take an active part in leading the Mini-Church. In fact I often spend the time they are here either in bed or in the other room.

I now have arrived at the point where I need someone here when P is at work. Fortunately, P works for a great company and while she has to pay a lot for our share of the health insurance premium, it is excellent health insurance. Because it is such an excellent health insurance policy and because of my extreme illness the health insurance will help pay for a full time nurse to be here on the three days a week that P works a full day. We will have to pay 20 percent of the cost for having the nurse here for those three days a week. On Fridays when P works from 1 PM until 7 PM we have contacted another health care agency who will provide a CNA. The CNA will be here from 2 PM until 6 PM and will help get me supper and help me into bed.

Both the nurse and the CNA will do things like get meals for me, do my laundry, make my bed, order my medical supplies, do my tracheotomy care and do the many other things the P has been doing for these past number of years. Hopefully this change will make life easier for P. She will no longer have to help me get dressed, prepare my lunch in morning and place it by my chair and get something for supper started, while she is trying to get herself ready for work.

Of course having the nurse and the CNA here for the hours P is at work, even with what the health insurance will pay, will cost us thousands of dollars a year. I suppose this is the reason we worked so hard to save our money. However, I am very concerned that P have enough money for her retirement.

P and I always knew we would reach this point and now it appears that we have.

More Wheelchair Delays

2010-03-04T09:09:00.001-08:00

A month ago on February 04, 2010 we received an email from Rehab Tech, in response to our email asking when we could expect the wheelchair to be shipped from the manufacture, stating the manufacture gave them an estimated ship date of February 22, 2010. On Friday February 26, 2010 we sent Rehab Tech an email asking if they had received the wheelchair. We were shocked to receive a response stating the wheelchair hadn't been shipped and that the manufacture was not able to give an estimated ship date.

We decided to call Rehab Tech and discuss this problem with the branch manager. When he called us back he told us that the order for the wheelchair had been place on January 13, 2010 roughly two weeks after P. and I thought it had been ordered. It turned out that the delay was supposedly caused by a dispute with the insurance company about some labor charges in the paperwork Rehab Tech had submitted to the insurance company. Both P and I remember calling Rehab Tech and asking our contact person at Rehab Tech about that labor question because it was in the copy of the information the insurance company sent us. However, the contact person said that it wasn't a problem and had been resolved. After talking to Rehab Tech earlier this week, we now have no idea when to expect the wheelchair to be shipped from the manufacture.

On February 16, 2010 P contacted the Rehab Tech technician asking him what the process would be once they received the wheelchair. He responded by telling us that once they received the wheelchair it would be put in their work queue and when they got to it, they would make the additional modifications adding the special features I would need. He requested that I travel to their Naperville, IL office with an external ventilator battery, and the humidifier I must use, so they could make certain the additional modifications would be correct. Then after all their work on the chair is finished we would have to make an appointment with the Rehab Institute of Chicago so their physical therapist could make certain that everything was done correctly.

When I asked if we could make the appointment with the Rehab Institute of Chicago as soon as Rehab Tech received the chair, I was told "Typically, they didn't do that." They would only make that appointment after all their work was finished. However, because of the all the delays getting this wheelchair ordered I am still going to push with setting up the appointment with Rehab Institute of Chicago as soon as the wheelchair and all the additional parts arrive at Rehab Tech. I feel that because it took Rehab Institute of Chicago a month to get their letter of medical necessity to Rehab Tech and then it took Rehab Tech a week of faxing that letter to my doctor and my doctor telling me that they never received it nor had they heard from Rehab Tech. We finally had them fax that letter to P. at her work and we hand carried it to my doctor to get it signed.

It is because of all these delays and apparent lack concern on both Rehab Institute of Chicago and Rehab Tech that we are going to really push for special attention once they receive my wheelchair. So I have no idea when I will receive this new wheelchair. However, once I have it I plan on submitting some letters of complaint to Joint Commission on Accreditation of Healthcare Organizations (JACHO) about both companies. I also intend to ask to see where my medical information was being faxed to during that week when my doctor never received it until we hand carried it to the doctor. I believe that under Health Insurance Portability and Accountability Act (HIPAA) I am allowed to see where they sent my information. If they sent it to the wrong fax number I am going to submit a letter of complaint to HIPAA.

I feel that I have been more then patient with both companies. My first appointment was on October 15, 2009 and now almost 5 months later I still do not have my new wheelchair and no one can give me an idea when I might expect to receive it.

The Vacation is Over

2010-01-25T07:47:00.000-08:00

Last week P, with a group from our church, was on a working trip to help at the orphanage El Hogar de los ninos Nazareth in Tegucigalpa, Honduras. So that meant I was on a vacation of sorts. However, I am not able to stay home alone so before P signed up for this working trip she contacted our four children to see if any of them would be willing to come and stay with me for the week she was gone.

Not surprising all four told her to sign up for the trip and that they would work out a schedule for when each of them would come and stay here with me. So on the Friday night before she left, our oldest son C and grandson L drove the 3 hours from their home to stay with me on the first Saturday, Sunday and Monday morning. On that first Saturday, C and our son in-law worked on his car to repair the car’s heater. Both C and L told me that it was a rather cold ride, from their home to ours, in a car without much heat. Our son in-law works for his father at their family car repair business so Saturday morning son C and son in-law KK went there to work on the car. That meant the grandson L and I stayed home alone. However, shortly after L’s father and uncle KK left to repair the car our youngest son K and daughter in-law C, who live about an hour away in Chicago, walked in the front door. I was glad to see them because I have an extremely hard time talking and a 5 year old grandson doesn’t always remember that. So I end up talking far more than I should which will cause me to suffer extreme exhaustion, but with the other here, I didn't have to talk much.

After lunch L and his aunt and uncle went to a local sporting goods store where son C after restoring heat to his car joined them. I stayed home resting. When they returned late in the afternoon, C made supper and helped me by cleaning my trach. After church Sunday he made dinner and then he, his brother K and sister in-law C sat in the den with me and grandson L spent the rest of Sunday relaxing watching movies, reading, and playing games with L.

Monday morning while C prepared a couple of meals for use later in the week, son K went to work, his wife C worked on an assignment for her Master’s degree, and Grandson L did 5 year old things. About midmorning the front door opened and in walked our daughter K. Because it was a Federal Holiday neither she nor C had to work allowing them to spend time with me. After lunch son C and grandson L left to return to their home. And later Monday afternoon daughter K left for her home. Son K and his wife C stayed Monday and Tuesday evening. After supper Monday, K made a vegetable Chili, putting it in a crock pot and placing it in the refrigerator. Tuesday it sat all day warming in the crock pot filling the house with a delicious odor.

Wednesday and Thursday our daughter K and husband KK stayed here. Because they both work late and had meetings at church Wednesday evening we had one of the meals C had made on Monday. Thursday morning when daughter K arrived at work a couple minutes late, she told how she had forgotten how “rigid” I was about my morning routine. I am not certain if she is correct about me. I like to think that I just want things done the “correct way”.

Friday morning son J drove down from Chicago and spent Friday through Sunday morning here. He also assembled a number of meals which along with the meals the others made are in the freezer. These meals are a huge help because I am certain P will still be resting up from a busy week at the Honduras Orphanage and catching up with all the things that have piled up at work while she was gone. So now instead of having to make a meal, she can take one out of the freezer.

I must say that I had a wonderful vacation. It was great being able to spent time alone with each of the four children and two in-laws while they were here.

Wheelchair is Ordered

2010-01-05T05:11:00.001-08:00

Last week we received an email from Rehab Tech the company we deal with for all wheelchair related issues. The email stated that they had received the letter of approval for purchase of the new wheelchair and that they would be sending in the order for the new chair. So now we wait until they tell us they have received the wheelchair. I am hoping that it only takes 4 to 6 weeks for that to happen. Of course after Rehab Tech receives the new Wheelchair they will have to do further modifications to it so the chair will be able to have my ventilator, ventilator external battery and the humidifier mounted on it. At least it is ordered and we are one step closer to finishing a process that started in October, 2009.

Wheelchair Progress Continues

2009-12-29T04:41:00.000-08:00

If you have been reading this Blog, you know about the difficulties we have been having getting through the first part of the process for replacing my wheelchair. Two weeks ago today, Pam faxed the letter of Medical Necessity, that we had hand carried to my Neurologist for her signature back to Rehab Tech, which they in turn faxed to the insurance company. We had been told to expect a LONG detail getting the insurance company to approve this request with the insurance company doing everything they could not to approve this request.

Last week Monday Pam called the insurance company and was told "Yes they had received the letter and no there was no way to tell exactly where in the approval process it was." Yesterday morning Pam called them again and was told "Oh your request has just been approved". If you call back this afternoon after the letter of approval has been generated we will send you a copy and fax a copy to your durable medical supply company.

This has been a real answer to pray because we were concerned that the insurance company might have been the biggest hurdle in this entire process.

Hopefully Rehab Tech, the durable medical supply company, is working this week between Christmas and New Years and places the order for the new wheelchair with manufacture. We have been told that it normally takes about 6 weeks from the time the order for a new wheelchair is placed until it is delivered to Rehab Tech. Once that happens Rehab Tech will need to add the specialized modifications, things like a ventilator mount, ventilator battery mount and laptop computer tray. Once that has been finished, we must make an appointment with Rehab Institute of Chicago and go there to try out the new wheelchair to make certain that everything is correct. So, as you can see, there is still a long way to go before I actually have this new wheelchair.

However, I think the biggest hurdle is behind us, the hurdle of having the insurance company agreeing to pay for this new wheelchair.

A Merry Sad Christmas.

2009-12-26T07:43:00.001-08:00

Yesterday was Christmas. Three of our children and two spouses were here. Our son J and his brother K and sister in-law C came late Christmas Eve, after attending their church's Christmas Eve service. Daughter K and husband K, because they live close, came Christmas morning. Our oldest son and family, who live the furthest away, came the Saturday before Christmas so we celebrated an early Christmas with them.

It was a great Christmas. After our traditional breakfast of pan style oven baked French toast and my niece's Apple Bread Pudding, the guys moved my recliner and all required medical equipment from the smaller den into the much larger great room. While this move was a lot of work, it allowed me to enjoy opening presents and made it possible for everyone to be in the same room while opening Christmas presents. After eating breakfast and getting dressed, but before opening presents, I ended up taking a nap from the exertion. However, I made it through the rest of the day without any more naps. I think we all had a Merry Christmas, P was pleased with her new camera and spent some time getting used to it. Everyone else settled down to read books, put together gifts that needed assembling, or went into the den to play with the WII game daughter K received for Christmas and brought along so others could enjoy it. I connected my computer speakers so we could all listen to Christmas music and so I could communicate with everyone using Cepstral's "SwiftTalker" a text to speech program I have started using.

I think it was that nap, the fact that I had to ask P to help me get ready for bed at 5:30, being in bed for supper and taking a short nap immediately after supper and falling asleep at 8:30 that caused me to review my Blog. Reviewing my Blog told me something I already knew but think I was ignoring and that is that I am much weaker or sicker now then I was at the beginning of the year. In fact reading my Blog I was amazed at how closed in my world has become. I think one can see that by the decreased number of Blog entries I written this past year. I believe the number of Blog entries have decreased because my life has entered a rather set routine because I no longer have the energy to go and do. So I spend my days sitting in the den on my computer using Instant Messaging to talk to family, working Sudoku puzzles, making and solving Jigsaw puzzles, playing Cribbage and either listening to a Southern Gospel Quartet Music web radio station or watching movies I receive through the mail from Netflix. In fact P’s present to me this year was to increase the number of DVD’s we can have checked out from Netflix at a time from one to two. One reason for this change is so P doesn’t have to spend a lot of time searching for movies I am interested at the local library. However, the main reason was to give me the freedom to retain the ability to do something for myself without having to ask someone else to do it, go to the library, for me. Even though there is a slight increase in the monthly Netflix cost, I like being able to find a movie, order it, receive it in the mail, watch it, and return it without bothering, asking, and/or reminding P of yet one more thing she could/should do for me.

I think the above is the happy part of this posting. The sad part is that the neuromuscular disease has progressed much faster and more then I had hoped. I now find that even when I do relative easy things, like doing what most people consider a normal morning routine causes me to become exhausted to the point of needing to take a short nap. As a result I find myself avoiding doing most things, or planning my activities so that I use the least amount of energy. For example on the days that P works, I fill two bottles with water and bring them into the den while waiting for my morning coffee to finish brewing. Also on those days, I will help P prepare my lunch by cutting up a piece of fruit, making a salad while making my breakfast. P will place these items along with a thermos of soup by my chair in the den so I will not have to get up in the middle of the day. I also have a couple of containers so in the middle of the day I empty my Foley collection bag. Because I find talking to be one of the hardest and most tiring things I do, often after someone stops by to visit, my chest muscles are so tired I can't initiate a breath, I have begun using "SwiftTalker" a program that allows me to type sentences, questions or responses and then the program converts the text to speech using my computer speakers.

I have talked to my neurologist about this exhaustion and she tells me that it is caused by the progression of the disease. She tells me that the exhaustion is caused in part by the deterioration of the nerves and in part by the weakening of my muscles. She tells me that because of this deterioration and weakening, I am expending far more energy doing simple tasks then I realize. Because this disease is progressing and because she is doing everything currently approved by the government for treating this type of disease, at my last neurologist visit the doctor asked, if she could find something, would I be interested in taking part in either a medical or drug experimental trial/study that might help to either reverse or slow the progression of this disease and possibly increase muscle strength. In the past, I have talked to my internal medicine doctor about the progression of the disease and he has told me the same things that my neurologist told me. So I told my neurologist that if she finds either a medical or drug experimental trial/study that I would be interested in exploring taking part in one.

Often when I write either a Blog posting or an email similar to this post, at the end I always try to turn to the positive. However, I am not going to do that this time.

The Frustrations

2009-12-16T11:18:00.000-08:00

Have you ever thought about what it would be like to have to run your life by another person’s schedule? I know that we all have to change our schedule occasionally to fit it around someone else. However, how would you feel if you ended up doing that most of the time? I imagine that is one of the things prisoners don't like about being incarcerated, the having to conform your everyday schedule to that of the institution?

I have thought about this a lot over the past couple of years. Then these past few weeks it was really brought home to me. I began thinking about this again when it seemed that Rehab Tech couldn't seem to get the Letter of Medical Necessity faxed to my doctor. The person at Rehab Tech would say that it was faxed and the person at the doctor office would claim they never received it. My wife P would try to find the time at work to make some hurried phone calls to try to resolve this issue. I, because I am not able to talk easily, sent emails to Rehab Tech which were not answered for long periods of time. Finally one day when the doctor office called to say that they still hadn't received the Letter of Medical Necessity, I asked for her phone number and fax number. I sent this information to Rehab Tech asking them to please call the doctor office to coordinate the sending of the fax. This past Monday, when at the doctor office, I asked the person if Rehab Tech had ever contacted her. She said no she never heard from them. Fortunately P asked Rehab Tech to email the Letter of Medical Necessity to us which we printed and brought along Monday for the doctors signature.

When we read through the Letter of Medical Necessity we discovered that the Rehab Institute of Chicago (RIC) had the wrong office address and fax number for my doctor. They had the information for the practice she used to work at. Now if I were able to talk on the phone I would have called the person at Rehab Tech and asked her to read the fax number to me. However, because I am only able to send emails, which Rehab Tech, when they finally replied to them, would say "I faxed the Letter of Medical Necessity to your doctor and haven't heard back from them" never writing down which fax number they sent it to. If I had received the fax number Rehab Tech was sending my Letter of Medical Necessity to I would have known they had the wrong number. Now that I've written this information, I believe that it is against Health Insurance Portability and Accountability Act (HIPAA) to fax my health information to a doctor without first calling to find out if you have the correct fax number. The frustration I feel at not being able to pick up the phone and talk for more than a few short sentences or words is immense.

This past Monday morning I had a doctor visit scheduled for 11AM. About 9 AM I remembered that I hadn't received an appointment reminder phone call so asked P to call their office and make certain I did have an appointment for 11. When she called they told her that I wasn't on the schedule and that the doctor no longer had Monday office hours at the office closest to our home. However when P pushed for more information and informed them that we had the card with the appoint date and time on it, the doctor office finally admitted that they had switched to a new computer system and my information must not have transferred from the old system to the new one. They said they would "squeeze" me in at 5:30 Monday evening. As the day progresses, my level of energy decreases to such a low level that by late afternoon I am totally exhausted. The doctor office informed P that it I could come at either 5:30 Monday evening or 6:30 Wednesday evening. When I heard that I exploded with anger. If I had been able to talk I would have explained to the doctor's scheduling person that such a response wasn't acceptable. I would have insisted on talking to the office manager and expressed my anger to that person. Once again I am confined by other people. I can't expect P to stop everything she has to do, remember she is doing everything around here I can't help at all, and argue further. So we took the 5:30 appointment. I am ashamed to admit, that when we arrived at the doctor's office, I had some strongly worded sentences with the poor office girl. I know it is a feeling of helplessness that makes me become so angry about situations like these. I get frustrated because I know how I would like to handle situations like these only because of a physical weakness can't.

Now I finally arrive at the event that caused me to write this. This morning at 11AM I received a phone call from a home aid telling me that she would be here at 12 noon to help me shower. Now I know I could have said "No that won't be convenient because I am planning on eating my lunch at noon". But this isn't my normal home aid; my normal aid was involved in a traffic accident yesterday so the other aids are taking extra patients. So I said yes I could make a noon shower work.

It's not the issue of the home aid coming when I would normally have lunch that is frustrating. It's that I don't have the freedom to decide when I want to take a shower. It's the fact that I need to have a home aid that is frustrating. It is the having to rely on someone to drive you to the doctor and so the doctor appointments are made when it works best for someone else. It's not being able to pick up the phone and talk to someone to try to resolve an issue so I must rely on emails which are easily ignored. It's the fear of total mind and body numbing exhaustion if you do too much, so you soon find yourself afraid to do much of anything. It's the aggravation of not being able to help around the house. Not being what I consider an active, helping team member. It's all of these things plus the many other little things someone with a chronic illness find that they no longer can do

Wheelchair Progress is SLOW but moving forward

2009-12-04T06:53:00.000-08:00

The last meeting with Rehab Institute of Chicago (RIC) was November 5, 2009. Now almost 1 month later on Monday evening we received a phone message from RIC saying they finally have finished the paperwork which states that in their opinion I need a new wheelchair. Yesterday, Thursday December 3, 2009 we sent an email to Rehab Tech, the company who will order the new wheelchair, and once they receive it make the special modifications I will need, telling them the letter of medical necessity was on its.

However, Rehab Tech hadn’t received the letter of necessity from RIC yet. I assume it is in the mail and just hasn’t arrived yet. Our contact person at Rehab Tech said once they receive the letter of necessity they will fax it to my neurologist for her signature. Then once they have the doctors signature they will send all the paperwork to our insurance company.

So it seems to me that we have completed only the first two steps in the process of getting the new wheelchair. There are many more steps that need to be completed in this process and all of these steps take time. The next most important step is to receive approval from the insurance company. Once that huge hurdle is behind us it will just be a matter of time. However, until that hurdle is behind us there is still a real possibility that the insurance company will say that in their opinion I don’t need this new wheelchair.

I think it will be many more months before I see this wheelchair.

Wheelchair Request Slows Down

2009-11-21T07:58:00.000-08:00

On October 15, 2009 we had our first appointment with Rehab Institute of Chicago (RIC). You can read about this visit at The Process Begins for a New Wheelchair. On November 5, 2009 we had our second appointment with RIC. I wrote about this visit at The Wheelchair Process Continues.

One week after the second visit with RIC we checked with the medical supply company about the Letter of Medical Necessity only to be told that the person in charge of creating the Letter of Medical Necessity, which will be forwarded to my doctor for a signature, had to unexpectedly take some time off work. I understand that the unexpected happens so decided to wait another week and check on the progress of the Letter of Medical Necessity.

On Thursday November 19 I sent an email to the person in charge of the Letter of Medical Necessity to check on the progress. I received an email in reply stating that they are still waiting for the physical therapist from the Rehab Institute of Chicago (RIC) to send them the Letter of Medical Necessity. They told me that they would send RIC an email asking about the progress of my Letter of Medical Necessity. On Friday when my wife P. followed up with RIC by phone, she was told the person who was to write my Letter of Medical Necessity had taken the day off work.

It has been two weeks since we were at RIC finalizing what I needed and which wheelchair best fit my medical needs and now I find out that nothing has been done about sending my doctor a Letter of Medical Necessity for her signature. I wonder if we hadn’t followed up with the medical supply company how long my request would have sat on someone’s desk with no progress.

Even after the medical supply company receives the Letter of Medical Necessity from RIC, they have to send it to my doctor’s office. After the doctor signs the letter it must be returned to the medical supply company. Then they must create a document containing the Letter of Medical Necessity and a quote for the wheelchair. The insurance company must decide if they will pay for this new wheelchair or not. If the insurance company approves the request, the medical supply company creates an order and sends the wheelchair order to the manufacture. Because these wheelchair are all custom built, the order is placed in their wheelchair build queue.

As you can see there are many, many stops in this entire process where the wheelchair request can either be lost, or just sit on someone’s desk waiting to be uncovered. At the risk of being labeled a pushy pest, I will continue to keep a close eye on the progress of my new wheelchair request.

The Wheelchair Process Continues

2009-11-07T06:25:00.001-08:00

On Thursday Nov 5 we returned to the Rehab Institute of Chicago (RIC). This time the people at RIC had finished their research and had a wheelchair they wanted me to try. They had considered our concerns about having a wheelchair that would work in our house. We had a number of specific concerns. Would a different wheelchair still allow me to get to the shower? Would a different wheelchair make it possible for me to remain in the chair all day? Would a new wheelchair allow me to have both the ventilator and humidifier mounted on the wheelchair? Currently I must transfer from my wheelchair to my recliner and back to the wheelchair a number of times during the day. Having both the ventilator and humidifier mounted on the wheelchair would mean I wouldn’t need to connect and disconnect the humidifier from the ventilator every time I transferred. Both connecting and disconnecting the humidifier and transferring are becoming a safety issue. Finally we had a concern about being able to use the new wheelchair in our existing van.

We were both pleased to see that the wheelchair they thought would work for us had a slightly shorter footprint. Also the seat height from the floor appeared to be about the same as my current wheelchair. After spending some time reviewing and addressing our concerns they wanted me to transfer to the new wheelchair and take it for a test drive around the hallways. I was pleasantly surprised; the new wheelchair was much more comfortable than my wheelchair. This is important because one of my goals is to be able to spend my day in the new chair and for that to happen the new wheelchair must be at least as comfortable as my recliner.

After spending about one hour in the new chair while discussing additional options, things like a laptop computer tray, I would need on a new chair it was time to transfer back to my wheelchair. I really didn’t want to transfer. One reason I didn’t want to transfer was I had reached the end of my energy level and was totally exhausted. Another reason was that my wheelchair isn’t a comfortable chair, when we got it 7 years ago; the sales person hadn’t order the correct length seat. Also my health condition has changed, I have gained weight, must use a ventilator, have trouble seating upright plus many other health changes. All combined contribute to making my wheelchair uncomfortable.

After spending about 2 hours at RIC, they had all the information they needed. Now they write up everything I need on the new wheelchair and send a letter containing the new wheelchair specifications to my neurologist for her signature. After receiving the neurologist signature they submit everything to our health insurance company for their approval, something I hope we receive. Once they have received the insurance company approval they will order the wheelchair from the manufacture. Then once they receive the wheelchair from the manufacture they will make the additional modification to the wheelchair for my special needs. They told us that hopefully sometime in February 2010 I will receive the new wheelchair.

After I have the new wheelchair, I must contact my handicapped van manufacturer and have them come out and install the electronic locking system for the new wheelchair in my van. So as you can see, we are only at the beginning of an extremely long process.

Busy Candy Weekend

2009-11-03T06:01:00.000-08:00

Late Thursday afternoon our oldest son C, daughter in-law K and grandson L arrived. They were spending a couple days with us because L had a couple of days off at his school. Because they arrived shortly before supper and because L was tired, he and I didn't do much on Thursday.

Friday morning I got up at my usual time and tried to not make a lot of noise downstairs by using my wheelchair at a very slow speed. However, I was just turning on the coffee maker when I felt another presence in the kitchen. I turned around to see that L was up and ready to watch some morning children television shows. He had our youngest son rather large stuffed cow sitting on his shoulders.

I poured my coffee and the two of us went into the den. It was about 6:30 in the morning and L isn't allowed to turn on the television before 7 AM. I wrote my usual morning email that I send to my entire family and extended family. And I read my emails, checked the local newspaper and drank my coffee. L spent the time looking at some books and asking me if it was 7 o'clock. Poor L had a hard time keeping quiet and staying settled down. After all this past Friday was when he, his parents and his grandmother were all going to a LEGOLAND Discovery Centre and I think he thought everyone should be up and getting ready. In fact everyone did get up and they all were on their way shortly before 9 A.M.

They spent most of the day at the LEGOLAND Discovery Centre arriving home just before 5 P.M. As soon as they all were in the door L asked his father to help him put together the Lego kit he had purchased at the store. So while Grandma made supper, L and his mother and father sat on the den floor and assembled a Lego race car.

L had slept most of the trip home, so after supper he spent time in my bedroom setting in my wheelchair while I was in bed. There the two of us spent the next 1 ½ hours watching television. He would constantly make comments on the shows or would ask me questions about the show which I tried to answer using one or two words. I think L has a difficult time figuring out why his Grandpippy doesn't talk much.

Saturday morning we all woke up to a nice partly cloudy day. Once again L and I watch television while waiting for the rest of the family to wake up. Now on Friday we had receive a couple of inches of rain making it a great day to spend indoors. However, now with the better weather L and his Grandmother decided to go to a local orchard. Son C and daughter in-law K stayed home with me. I did my normal routine of doing Sudoku and jigsaw puzzles while they spent the morning relaxing. Late Saturday afternoon our daughter and son in-law and some friends with their two young kids came. After a light supper, everyone went out Trick or Treating. They went down one side of our short street and back up the other side arriving home with each of their pumpkin buckets filled to overflowing.
However, before they went Trick or Treating L had to have his Uncle K take his Lego race car apart and rebuild it in a different race car model.

By mid morning Sunday everything was back to our normal live again. I however had a Great Lego weekend.

Visiting Weekend

2009-10-25T11:43:00.000-07:00

It started on September 26, 2009 after K and C’s wedding my younger brother C came to me and told me that he, my son J and my son in-law K were talking about getting together to make beef jerky. My brother C said it would work for him to come Friday October 23 and he and the boys would make beef jerky.

And so it started. During the past four weeks, I invited most of my nephews to come and take part in this family get together. I also invited my older brother and his wife. However, for one reason or another, my nephews were not able to come. My brother told me he thought they were scheduled to go to visit his wife’s family and wouldn’t be able to come. So despite my best efforts it started to appear that it would not be as large a gathering that I was trying to put together.

About a week ago by my older brother asked if my offer for his coming was still good. I told him “Of course it is still good and to ask his wife along also.” It turned out that his wife wasn’t able to get the time off work. Than on Thursday evening the phone rang and my younger brother’s wife said it worked out that she would be able to come along if we still had the room. Now that we are officially “empty nesters” we have plenty of room so M came along.

I must say that these weekends when my brother and boys get together to make beef jerky aren’t just spent making beef jerky. They often will start the day off with a special type of breakfast and finish the day with a fancy meal. As we began thinking and talking to one another we must have sent between 50 – 75 emails, instant and text messages to each other. The making of the beef jerky wasn’t what all those messages were about; they were discussions about the other food items and the dinner menu. Once the menu was finalized, those messages switched to who was preparing what and did we have all of the required spices at our house or would the need to be taken along from other’s homes. Then there were messages about the types of breads my brothers would make while here. At last all the decisions were made and on Friday afternoon people began to arrive.

My brothers and sister in-law arrived first on Friday afternoon. Just about the time they had unpacked coolers, a dehydrator, a smoker and personal items from the car, daughter K arrived, than her husband followed by our son K and his wife C. Soon everyone was talking, visiting making supper. It was about this time that I ended up feeling totally exhausted, even though I had taken two naps earlier in the day and tried to spend the week resting up for the weekend, so I was in bed before supper. Shortly after supper, my wife P and other son J arrived. P had to work later and J’s train was running late. As each person arrived the visiting became more intense and the laughter more frequent. I sat in my bed watching and listening, not really hearing what was said but hearing how everyone seemed to be happy. Judging from the amount of laughter I would say that everyone was having a great time.

I remember one time a number of years ago when I made jerky, it took P and I 6 hours to slice the meat by hand. Earlier this year, we borrowed an inexpensive home style meat slicer which cut the prep time down to a couple of hours. After finding out how much easier and faster that was, my son in-law talked to his uncle, who works for a company that sells professional meat slicers, about borrowing a used professional meat slicer the next time we made beef jerky. So when K arrived Friday evening he walked in with a professional meat slicer. What took us 6 hours the first time and 2 hours the last time now it took us less than one hour to slice the meat for the beef jerky. In fact my brother only made jerky with a third of the meat he sliced. He froze the other two thirds and took the rest home with him for making into jerky at some later time.

Even though everyone was still busy, I finally had to close the bedroom door, give in to my exhaustion and go to sleep. Saturday morning when I woke up and went into the kitchen to make coffee, I found one HUGE bowl with no knead bread rising. I also found a bowl with a sourdough yeast sponge and two containers, one with whole wheat kernels soaking and one with oatmeal and other grains soaking. Also there was absolutely no room in the refrigerator for anything else. Later, I found out that the overflow refrigerator in the basement was full of marinating meat waiting to be smoked and dried making beef jerky. My older brother D came up as the coffee was brewing and once it was brewed we sat in my bedroom drinking coffee and catching up with each other’s life. Soon the house was busy with people. The four women were going out for breakfast and then planned to spend most of the day at daughter K’s house making applesauce and visiting.

Son J finished the Bacon Sausage Explosion he had on the smoker while brother D made homemade buttermilk biscuits for our breakfast. While they were busy making that my brother C was busy loading his smoker with strips of sliced, marinated beef brisket. It was at this time that we discovered that the weather was too cool and windy causing the smokers to be too cool. Because two of the smokers were electric, we moved them into the garage. But we found out that if we plugged both smokers in at the same time they caused the circuit breaker to blow. So we took an extension cord and plugged it into our neighbor’s garage electric outlet. I don’t know when J and K started smoking their sliced meat but for a while we had three smokers going, two electric and my charcoal smoker.

By early afternoon all of the jerky had been smoked and was being dried. So after a rest period the guys started on the evening meal. Son J. started preparing Braised Beef Shanks with Winter Squash and Red Chard. Brother C smoked half a salmon, made portabella mushroom potato gratin and poached pears for dessert. That along with a salad brought by two of J friends and the breads my brothers baked made for a wonderful evening meal.

Shortly after the meal, J two friends and left to drive back to Chicago. Soon after that K and C also left to drive back to the city. I have no idea how long everyone else stayed up, but when I once again closed my bedroom door everyone was still up. This morning however, once my brothers and sister in-law got up and had a simple breakfast, they loaded the car and were on their way home by shortly after 9:00 A.M.

When son J got up this morning, the first thing he did was to go out and bring in the pork shoulder that he had placed in one of the smokers just before the evening meal and that had been in the smoker all night. He had tried a new rub on it which I liked better than the other rubs he has used when smoking pork shoulder. He used the two fork method to shred the pork shoulder so now we have shredded pork shoulder in small containers in the freezer. I wanted these because on those days P ends up working late, or has some of those too busy days the shredded pork will make a fast easy meal. J then did some work on his mother’s computer, loaded his car and headed back to the city.

It was a thoroughly enjoyable weekend. I love it when the family gets together and spends time preparing different foods. There are many other ways families can get together; weddings, camping trips, family reunions just to name a few. However, I no longer have the energy and strength to attend those types of functions. I can however, enjoy a house full of people. Having the beef to turn into jerky and a meal to prepare give everyone a purpose for being here rather than just visiting me. I find that if I am in my bed with the bedroom door open, I can hear and see a lot of the activity. I also find that doing this allows people to stop by my bed, sit and talk for a few minutes and then go off to attend to something. What a great way to have visitors. They can come and not feel like they have to spend every minute visiting, they can get up and leave the room without feeling guilty and if they can’t think of anything to talk about, they can always tell me how the smoking, or cooking is coming along.

The Process Begins for a New Wheelchair

2009-10-20T09:00:00.000-07:00

A while ago I noticed, that when sitting in my wheelchair, I have a tendency to lean forward and that it was hard for me to not lean forward. I also found I was becoming extremely tired after being in my wheelchair for an hour or so. When I mentioned this to my neurologist, she said that the time has arrived for me to get wheelchair that has a tilt and recline feature. She gave me the name of a local wheelchair store so we called and talked to them. However, they told us that they were not qualified to determine which features I would need in a new wheelchair. After calling a number of other wheelchair providers we decided to go to the Rehab Institute of Chicago (RIC). We know that they specialize in helping people who need the type of wheelchair that my doctor wants.

It took about a month before we could get an appointment, but last week Thursday we went into Chicago and had our first meeting with RIC. We were impressed with the service we received. The first thing they did was take a detailed medical history and then they sat and spent time just talking about my daily routine. They asked a lot of questions about the house, the van, how much I spent outside and how I spent my days in the house. They asked if I had a full time helper when P was at work, how I got my midday meal, bathed and dressed. In other words they covered a lot of background information.

I was amazed at the many different styles of wheelchairs available now. There are rear wheel drive wheelchairs, like the one I currently have. There are front wheel and mid wheel drive wheelchairs. There are wheelchairs with feet rests that fold up. There are wheelchairs with feet rests which will swing to the side. Some chairs where the ventilator can be mounted on the back of seat. Then there are other wheelchairs that have an articulating ventilator tray. We found out that some wheelchairs allow the ventilator external battery to be mounted under the wheelchair; other wheelchairs must have a special platform for the external ventilator battery.

As we were leaving RIC, the people we were talking to said they were going to contact a number of wheelchair manufactures with questions that we had raised in an attempt to try to get the best wheelchair to meet my special needs. Because I have been in a wheelchair so long and now will be getting a completely different wheelchair, I have been writing lists of questions and emailing them to RIC.

And so begins the task of trying to get a different wheelchair, one that will better fit me now that my condition has changed. This was only the first step in getting a different wheelchair. After all the RIC appointments we will begin the task of talking to the insurance company to see if they will approve payment for a different wheelchair. If the insurance company, for whatever reason, turns down the request, I won’t be getting a new wheelchair because they cost tens of thousand dollars.

The Wedding Weekend

2009-09-29T06:53:00.000-07:00

My youngest son’s wedding was this past Saturday and what a weekend it turned out to be.

It all started about three weeks ago when we called my medical supply company and order oxygen for the weekend. Even though the wedding was in Chicago about 1 ½ hour drive from where we live, we decided to stay in a hotel in downtown Chicago. Staying there would allow me to be driven to the hotel and rest up from that drive. Also all of my siblings were staying at that hotel giving me the opportunity to visit with them. Then on Saturday afternoon, I would be driven to the church, about a half hour of city traffic.

Earlier in the week of the wedding my wife called the medical supply company to check that everything was ordered and that the oxygen would be at the hotel when we arrive. That was when we began to be worried. The office that normally would deliver the oxygen to the hotel was being closed and it deliveries were being done by another office of the supply company. So Friday morning P once again called the medical supply company to make certain the oxygen would be there when we arrived. She was told that it would not be there when we arrived but would be there within an hour of our arrival. So P filled two portable oxygen tanks and we left home and drove to the hotel.

When we had arrived and check into our Handicapped assessable room we discovered that I couldn’t get into the bathroom. So P called the desk and they found another handicapped assessable room, one that I could get into the bathroom. However, this move almost made P late for the wedding rehearsal, so she left me in the care of our nephew T. Because the oxygen had still not arrived, I asked T to call the medical supply company to make certain that the delivery was on the way. After lengthy phone calls with the company T told me that our local office had contacted the Illinois office and assured me that it would be delivered. However as a precaution I turned down the amount of oxygen to a setting below what I need, thus extending the length I would have oxygen. When P returned from the rehearsal the oxygen still had not arrive, so she called the company's after hour’s number. Finally when the delivery person called back he basically told P that it was late and he really didn’t intend to make the delivery. After many phone calls to the after hour’s number and to the delivery person he consented to making the oxygen delivery. However, by this time I was out of oxygen and was beginning to feel the effects of not having enough oxygen. Finally at 12:30 in the morning he showed up with the tank of oxygen. It had taken over eight hours of phone calls and arguing to get the oxygen delivered.

That morning, the morning of the wedding we woke up to beautiful weather, the sky was clear and you could see for miles. P and daughter K left for a breakfast with the bride and the ladies of her family. I spent the entire morning in bed resting. We left for the church early that afternoon. I must say the wedding was just wonderful. The minister had a homily about the meaning of marriage. She mentioned how impressed she was with how the young couple K and C had become involved with the church and the various activities of the church. It was a short ceremony but a nice one. After the ceremony the newlywed couple climbed aboard the tandem bicycle they had bought used and cleaned up and repaired for use in the wedding. As they rode away from the church to start married life, people across the street from the church stop and took pictures and clapped. The reception was at the church and by 6 PM everyone was back at the hotel.

On Sunday morning everyone crowded into our room to visit.

Then slowly everyone started to leave and head back to their homes. We were the last ones to leave for home. I was exhausted by the time we arrived home and spent the rest of the day in bed resting and recovering.

What started out as a disastrous weekend, ended up as a wonderful weekend with wonderful weather for the wedding, allowing the tandem bike ride. I liked the symbolism of the tandem bike because a marriage is like riding a tandem bike. For it to work well both people have to work at it.

More Doctor Appointments

2009-09-20T07:27:00.001-07:00

I have often thought of the different relationships I have with my six siblings. I love them all very much, but the relationship is different with each of them. It just so happens that I always seem to go to my younger brother after receiving upsetting news from my doctors. What follows is a letter I wrote my brother after my latest doctor appointment.

Well it's happened again. This past Wednesday I had a 3:15 neurologist appointment. The appointment wasn't the problem; the problem was the time of day 3:15 PM. And it just so happened that Wednesday morning at 11:30 both the home health nurse and the home aid showed up. So even though I had taken two naps one after breakfast and one after lunch, I was exhausted by the time we arrived at Dr. H's office, about a 5 minute drive from the house. I don't suppose the fact that I had a Dr. K appointment on Tuesday afternoon, that took 3 hours from the time we left the house until we returned, helped how I felt.

It also didn't help that I have begun having trouble keeping myself upright in my wheelchair. So I have begun to use the gait belt not only in the van, but also when I have to be in my wheelchair for a long period of time. When in my recliner, I have it tilted back, so I don't have to work to keep myself from collapsing forward.

So Dr. H thinks the time has come to look into a tilt wheelchair. However, the last time they put a tilt seat on this wheelchair base, it made everything so high that I had trouble getting into the van, and it was too high making it impossible for me to get my knees under the table or vanity in the bathroom. It also was too long causing me to damage the walls in the house. I am not looking forward to this wheelchair battle. I just know that no sooner will we get through the wheelchair battle that Dr. H will start telling me I need to stay in bed and have someone come in to help with mid day meals. This is beginning to feel like a long, drawn out, never ending war. As soon as one battle is finished another one appears.

When I was back in the waiting room, while P was with the doctor getting some prescriptions and getting the next appointment set up, that the doctor told her that there is nothing else the doctors can do. Now the treatments will be for quality of life. I have thought this for some time now; however I don't like to hear the doctors confirm my suspicions.

So as usual after a Dr. appointment, I am upset. I am upset at being so constantly tired. I am upset that everything is so much work now. It is an effort, not a big effort, but still an effort to move my arms. However, on the bright side, my legs aren't much of a problem, they don't move much anymore. And I can still win at level 7 Sudoku in an average of 23 minutes. I still sit and talk to family using either email or Instant Messenger. I've also found Hulu.com so I can watch some television shows that I've never seen before.

Telling a Yarn

2009-09-04T07:43:00.000-07:00

I love reading Britt-Arnhild's House in the Woods Blog . It is part of my morning routine, part of my armchair travels. A couple days ago she posted about “A Corner of my Studio” in which she tells about making her now husband a hand crocheted quilt for his bed.

Her post started me thinking of hand crocheted quilts, Afghans or throws. My mother seemed to always have a bag with her and she would always sit and either knit or crochet something. Whenever mom and dad would visit she would get settled in a chair and start working on the latest project. Always after she and dad left, we would find little bits of yarn on, in and around the chairs she had used during their visits. I am certain all of my brothers and sisters have memories of mom and her bag of yarn. And even though my mother spent the last couple of years in a nursing home, when we cleared their house after dad died, we found bits of yarn way down in the chairs.

Shortly after I had my tracheotomy, a rather large package arrived in the mail. When I opened it there was a beautiful handmade Afghan. It was from my wife’s cousin. She had made it just the right size to place over my legs when I sit in the wheelchair. She said in the enclosed noted that this Afghan was an expression of love for her to me. My mother in-law also loved to make Afghans. She would make one for each of her grandchildren. For many years we had one of her Afghans over our living room couch.

Then about two years one September day I was sitting in my chair and the front door opened and in walked two older people. It was a man and his wife from one of the neighborhood churches. It turned out that a couple of days earlier they were going door to door in our neighborhood passing out information fliers about a daycare at their church. When they saw my sign on the front door inviting people to knock and walk in because I am in a wheelchair making it hard for me to get to the front door, they said they just had to return and visit.

We had a wonderful visit talking about many things. Than just before they got up to leave, they gave me a hand knitted or crocheted blue and white Afghan. It turned out that their church had a group of ladies who get together on a regular basis and make these Afghans to be used as welcome gifts when church members visit people of the community for the first time.

I wonder if the room these ladies meet in has bits and pieces of yarn floating around like our rooms did after a visit from my mother.

What a morning

2009-09-02T07:26:00.000-07:00

Wow what a morning. Yesterday we switched out ventilators and replaced the circuit, something we do every 15 days. However, last night after switching the vents the vent seemed to be giving a lot of "Low Pressure" alarms. So P and I switched me back to the other vent and retested everything on the vent that seemed to be having excessive "Low Pressure" alarms. Everything checked out so we switched back again.

This morning when I got up I felt terrible. I had no energy, and was just dragging. When I transfer to my recliner, I have to switch the vent from external battery power to the house AC power. As I was doing that I glanced down at the vent and noticed that last night when we were changing and exchanging vents, we had not reconnected the oxygen to the vent. Which meant that I had spent the entire night without sufficient oxygen? So I connected the oxygen to the ventilator and after 1/2 hour I started to feel better.

However, that isn't the end of the story. After transferring to the recliner, I always have to connect my vent circuit to the humidifier which means I also have to connect the circuit heater and sensor cables. I must not have gotten the heater sensor cable connected properly and the heater started to alarm. Between my low oxygen level and all the alarms, I ended up waking P up and asking her to get me a new heater sensor cable. When she walked into the den with the new cable I started to disconnect the heater sensor cable from the humidifier, I must have moved it enough to actually have it make a connection because the alarms suddenly stopped. Turns out I didn't have it pushed in all the way into the connector.

Now everything has settled down. The sun is shining, the windows are open, I hear the birds outside, and Life is wonderful.

Ramblings

2009-08-01T07:56:00.001-07:00

Every morning during the week I send out a morning email to my brothers, sisters, nieces, nephews and a few friends. This morning the email the email was about scattering. My oldest son was on a motorcycle trip. My wife was going to visit our daughter in-law and grandson. One son and fiancée were attending a wedding and a family reunion. Another son is coming to spend the weekend here to care for me and while here to work on his car and do some grilling and smoking a pork shoulder. My daughter said something about being here for part of the weekend while her husband helps his brother in-law work on the car and to also help with the grilling and smoking. It seemed to me that everyone in the family was scattering and so "Scattering" seemed to be a great subject for this morning's email.

Earlier this week I had an E.N.T. doctor appointment to see if the doctor could determine why my voice keeps getting weaker. When the doctor was examining my throat and vocal cord muscles she told me that I had "an interesting anatomy". Now I don't know what the doctor meant by "an interesting anatomy", but a friend told me yesterday that those words might not be something you want to hear from your doctor. The doctor went on to tell me that because of my weakened condition, I would use my vocal cords for a short while when speaking and then start using my "false vocal cords". She also went on to say as this demyelinating disease progressed, I would find myself expending more and more energy talking and doing many of the other things I have always taken for granted. In the past three doctor visits all three doctors have told me the same thing. Maybe it is time I sit up and listen to them. I remember the arguments I had with my neurologist when she wanted me to start using a wheelchair and then again when she thought the time had come for me to retire. I remember one thing my neurologist said, was that my life would become a life of conserving my energy. I have always considered this as a battle with controlled retreats, meaning I will only give up when I can no longer safely do something, or when doing something takes too much energy.

However, I now find it difficult to determine when doing something will be doing too much. How does one know in advance when doing simple things like making a large salad or putting all the ingredients in the bread machine will be doing too much? Sometimes it turns out to be too much and sometimes I find that I can make the salad or start the bread machine. Then there are the days when you ask someone to make the salad or start the bread machine and later think "I feel good today, I should have made the salad or started the bread machine". Yet there are other times when I feel like I have enough energy to start an activity only to find that half way through I must stop and ask for help. I do know that if I guess wrong and do too much I will pay for it by feeling absolutely exhausted, to the point of tears, for a couple of days.

I find that I am amazed at the amount of energy others seem to have. In one days' time they are able to go to the gym, go to work, go shopping, make meals, do household chores and still have energy. I don't understand how they find the energy for all this. I find I get exhausted just having visitors for one hour or spending 2 - 3 hours going to doctor appointment or to church and returning home.

So I return to the question of how much is too much. And when I don't do something, how do I get myself to stop feeling guilty about asking for help. My brain tells me I should do these activities that I used to do without thinking about the consequences. One of the things I find interesting about this demyelinating disease, is that my thinking abilities don't appear to be effected; just my physical ability to do the activities has been effected. I am certain I am not the first person with an incurable disease to deal with these questions. However I am now at the point where I am dealing with them.

I hope you can understand why I used Ramblings as the subject for this entry.

A Bit Frustrating

2009-07-07T11:36:00.000-07:00

Yesterday I had a neurologist appointment. I thought it would just be a normal “Hi How Are You?” appointment. I think the problem started with the time of the appointment which was 2:30. My doctor was running a little behind and she finally saw me it was 3:30. In fact I was so tired I had fallen asleep and must have still been tired when she walked in. The last time I was there, she hadn’t liked the fact that I was having increasing trouble talking. Which we think was caused in part because of the ventilator I was on at the time. Now that we have upgraded the ventilator I find I don’t have to work as hard to exhale and so figured the talking was no longer an issue. However, once the doctor was in the room and I was awake, I still had trouble talking. The doctor decided to test my gag reflex and found that I didn’t have much of a gag reflex.

So now I have to go have a cookie swallow test done and go see an Ear Nose and Throat doctor. The doctor did say that she thinks I have lost ground again these last few months.

Like I say it is all a bit frustrating.

Busy Two Weeks

2009-07-05T12:23:00.000-07:00

This past week and this week have been and will be busy. My doctors have decided my health has deteriorated to the point where I need more help breathing from my ventilator. The ventilator I've used for the past five years didn't have the capability to do what my doctors wanted so I would have to change to a different ventilator. On the surface that sounds easy to me. You order the new ventilator, and swap it out for my other vent. However installing a different model ventilator is a lot of work.

We contacted our medical supply company who sent out my Respiratory Therapist for a meeting. Then the therapist contacted my Pulmonologist to discuss the issue with her. My Pulmonologist had to write a prescription and send that to the medical supply company. Then they ordered the new ventilators. Once they had the new vents they told me that they couldn't exchange them unless I was in the hospital for the first 24 hours on the new ventilator, just in case I couldn't tolerate the new vent. Of course by this time my Pulmonologist was on vacation, when she returned we found out that my Respiratory Therapist had taken a couple days off. Finally everyone was back in town and plans could once again move forward. Now the Pulmonologist had to contact the hospital and reserve a bed in the Intermediate Care Unit for this past Wednesday.

On Tuesday my Respiratory Therapist brought all of the new equipment, and there is a lot of equipment because you need doubles of everything, to the house and showed P and myself how to change out the circuits and calibrate the exhalation valve. I am certain I will need to be shown this again. The Therapist told us to bring the equipment with us to the hospital and to call him when we learned what time we would be arriving at the hospital. He would meet us at the hospital because he would be the person actually switching out the ventilators.

It was on Wednesday morning after we arrived at the hospital and I was admitted, and in the bed, that the next set of problem began. The hospital took the stance that they would not accept responsibility for me if I was on a ventilator that they were not trained on. And remember that the medical supply company wouldn't exchange the ventilator unless I spent 24 hours in a hospital. Everyone was talking and no one was listening. I was really beginning to fear that the hospital would refuse and the medical supply company would refuse to exchange the ventilator and I would have to go back to the doctor and start the entire process over again. I finally made a suggestion. I suggested that instead of having one of the hospital's ventilators sitting in the hall, why not have it sit in a corner of my room. That way in case something did happen all they would have to do would be unplug my new vent and plug in their ventilator. It was kind of funny when I look back on the situation. Everyone was busy talking about why they couldn't do what my doctor wanted. Once the patient mentions an idea, suddenly everyone was quite, listened to what I said again, then tell me that they would come back to let me know what they decided and they all leave my room. Then the nurse came back to tell me that my ideas would work and we could proceed with exchanging ventilators. So I stayed for the required 24 hours and came home Thursday morning.

Then on Friday morning my home health nurse came to change my Foley and the Respiratory Therapist came to deliver a new humidifier and heated circuits because the new ventilator circuits do not have a water trap to catch the moisture that rains out in the circuit. Then shortly after lunch my home aid came to help me get a shower. Saturday, K and C were here allowing C to work on her class work and K cleaned his car and worked on the tandem bike they have stored here.

That was last week, now this week. Monday morning the Wheelchair Repair Company is coming to work on my wheelchair and my Respiratory Therapist is bringing out even more supplies for the new ventilators and picking up the old ventilators. Monday afternoon I have a doctor appointment. Tuesday morning P's niece is coming to visit so I can see her baby and in the afternoon the home aid will be here. Wednesday morning I get a much needed haircut, and again in the afternoon the home aid will be here. Thursday will be a rest day. Friday morning I have another doctor appointment. And in the afternoon the home aid will come again.

What a busy two weeks. I still need to contact someone to make modifications to the ventilator storage box on my wheelchair. However, after these two busy weeks, I am going to wait a bit and recuperate before I start arranging for someone to work on that issue.

I want to add one comment. All my working life I have either been in repair service or a computer programmer. When in the repair service or as a computer programmer, I have always been confronted with a problem and it was my job to come up with a solution. I would think that the people in the medical field would have the same basic job. They would be confronted with a problem and should be able to come up with a solution. I must say I was a bit shocked at what happened when I first arrived at the hospital.

Jerky Weekend

2009-06-23T06:44:00.000-07:00

Planning started a couple of months ago. I talked to my two sons who live locally and to my brother who lives about a 6 hour drive away. After they checked their schedules it was decided that this past weekend would work out for everyone to come here.

My brother C left his home shortly after lunch on Friday and was making good time traveling until he was about one hour away when he came up on an accident and spent an hour sitting in traffic. Both of our sons left their homes in the city hoping to arrive here at about the same time as their uncle. Only because of heavy rains passing through the area causing slow traffic they also arrived much later then they wanted. Our daughter and her husband arrived after everyone else. So the prep work started a couple hours later than originally planned.

Once everyone arrived and had something to eat, they began preparing two beef briskets and one turkey breast. One brisket was prepared by slicing it into long thin slices and divided into two equal parts. One part was rubbed with a pepper jerky mix; the other was marinated using a teriyaki marinade. The other brisket was rubbed using a rub my brother made using a recipe he has used many time in the past. While some of the guys were working on the briskets, son J prepared the brine for the turkey breast. At some point during all of this activity, my brother started a batch of No Knead bread. He started with the basic No Knead bread recipe and modified it by using some of his sour dough starter instead of yeast, using 1/3 part whole wheat flour to 2/3 white bread flour and using beer instead of water. I was in bed while all of this activity was going on in the kitchen. However, there was a lot of visiting, talking, and laughter going on in the kitchen.

First thing Saturday morning was getting both smokers setup and started. The whole brisket was on my charcoal smoker while the sliced jerky brisket was on J’s electric smoker. Once that was done, brother C dealt with the bread dough. He told me that it was too wet and that he had to add a lot of flour making the batch even bigger. The turkey was removed from the brine and the jerky rub applied. The turkey was put on the smoker after the brisket was removed wrapped in foil and placed in the oven to finish.

Needless to say it was a wonderful weekend. It was great having most of the family here and being able to visit with my brother. Everyone had brisket and jerky to take home.

Happy 80th Birthday

2009-06-15T07:35:00.000-07:00

Saturday was Uncle B’s 80th birthday and P. and I went to a local park where his children and wife were having a family party for him. It was a lot of fun and I was able to visit with a lot of my cousins. Just after the food was delivered the announcement was made that before we would be allowed to eat, there was to be a group photo taken. I have to say that the photo was taken in record time. I will have to remember this the next time I need to take a large group photo.

My earliest memory of Uncle B. is he taking my older brother and myself to a White Sox baseball game. I have a vague memory of riding up a major street to the ball park. I have a vague memory of the game. I have a vivid memory of me sitting in the family car on the morning we were leaving my grandparents and my dad telling me I had to tell Uncle B. thanks for taking me to a baseball game. I sat there in the back seat pouting and I finally told my dad that Uncle B. should be thanking me for going with him instead of me thanking Uncle B. My Dad was so upset and I remember Uncle B. graciously saying that was all right if I didn’t say thank you.

Uncle B. owned a television sales and repair store. When we would come on our summer vacation to my grandparents, we always seem to stop at his store. We would park in the back of the store and walk in the back door. I loved standing in that repair area of his store. Sometime Uncle B. would take me along when he would go to a large shopping center to pick up televisions for repair. I think watching Uncle B. repairing televisions, going on those rides with him played a part in influencing my decision to go to a technical school after high school.

A Big, Big, Busy Month

2009-06-01T07:26:00.000-07:00

WOW May has been a Big Big month at our house. On May 17, 2009 our youngest daughter K. graduated from Valparaiso University Summa Com Laude with a degree in Social Work. The next day she started her new job. Not only was K. busy getting settled into a new job, she was busy packing, getting ready to move out of her family home, and getting all the many small details seen to for her wedding which was two weeks after her college graduation.

While K was busy with the new job and everything, her mother had the week before the wedding as vacation. P. didn’t want to be so busy just before the wedding that she would be so stressed that she would not be able to enjoy the wedding. Even with taking the entire last week off, P. was busy every day. I think this did help so K. didn’t have to worry as much. All she had to do was tell her mother what she needed help doing.

On Thursday P. picked up my niece at the airport. My niece M. of “Those Northern Skies” was the wedding photographer. Also late Thursday evening, K.’s brother, sister in-law and nephew (the ring bearer) arrived. So the house was rather full on K.’s last evening here. K. asked her nephew to let her sleep until 7 AM, so at 6 AM our grandson was tip toeing around the upstairs so he wouldn’t wake up his aunt. However, at 6:30 he went downstairs, he said to get a toy, but his aunt heard him sneaking down the stairs as only a 4 ½ year old can sneak. She told me later that once he got to the bottom of the stairs she saw her bedroom door knob slowly turn and the door slowly open. Once it was open enough L put his head around the door to check if his aunt was still sleeping. Then the door slowly closed and L got his toy and quietly tip-toed back up the stair. So much for sleep until 7:00, K told me later that she was already awake.

The wedding took place at the Valparaiso University’s Chapel of the Resurrection. So shortly after noon on Friday we all left and drove to Valparaiso, IN. We had arranged to have an early check in at the hotel so I would be able to rest up from the drive before the 3 P.M rehearsal. I made it through the rehearsal; I didn’t make it to the rehearsal dinner. After the rehearsal, I went back to the hotel room and went to bed. I wanted to be well rested for the big wedding. This turned out to be a good decision on my part because; my sisters and nieces were in out of my room all evening. It was great, I lay in bed and listened to them talk while they sat on the bed and talked.

Saturday I stayed in bed most of the morning resting while everyone else was busy with all the last minute wedding business. K. decided to have our family photos taken just before the wedding so I wouldn’t have to be at the church as long. So we had family photos at 12:00.

Shortly after 1:00 K. and I took a long walk down the aisle of the church. I must tell you that it is difficult to drive a wheelchair, smile, and not run into the bride while one’s eyes are all teary. But I managed it and K. arrived safely at the front of the church.

Rhubarb

2009-05-02T12:13:00.000-07:00

Every day I read “Britt-Arnhild's House in the Woods” Blog. This morning I read her post about “A love story between rhuburb and red chilli” . Now I have never tried rhubarb with chilies, but I do love rhubarb.

In my garden at our old house I had two large beds of rhubarb. Our youngest son K is the reason for the large beds of rhubarb. One fall day he was in one of those teenage bad tempers and making everyone's live a misery. So I ordered him out of the house telling him he had to spade over the garden. He went out and started to spade. Boy did he ever spade. He managed to spade over the entire garden that afternoon including the two much smaller beds of rhubarb. I didn’t give it much thought until the next spring when two large beds of rhubarb came up. Now having two large rhubarb beds didn't bother me, because I think that you can never have too much rhubarb.

However seven years ago, because of my deteriorating health, we had to move. At our new house we are part of a housing association and are not allowed gardens. However, I decided to try planting some rhubarb at the back on our yard in an area where the lawn care people don’t go. Two years ago I planted a number of rhubarb plants. I have been disappointed in the results. The rhubarb has come up each spring but it doesn’t look hardy nor does it seem to grow. Maybe it is too close to the trees? Maybe the soil isn’t the correct type for growing rhubarb.

So now I must rely on my brothers and sisters, who all live out of state, to bring rhubarb if they visit in the spring. Some years I get rhubarb and some years I don’t. Maybe this will be one of the years I will be able to get some. If so there will be rhubarb pie, rhubarb cake, rhubarb on a cloud, and any number of other rhubarb dishes.

I Go Back to College

2009-04-20T09:35:00.000-07:00

I just returned from talking to my daughter K’s senior Social Work class. I was asked to talk about how I've become my own advocate. Specifically how I've become an advocate for getting my insurance bill corrected and paid.

I wrote a two page outline of what and how I would like my little talk to go. I think K thinks I have turned a request to give a small talk into a huge issue. If I am going to get up early and leave early to get to an 8 AM class, I am going to say more than; "Hi the insurance company messed up and wasn't paying my medical bills correctly. So I went on a letter writing campaign and got them to review and correct my bill." And because I have been having more and more trouble talking and seem to tire extremely easy I am doing this on a day when P can come along to do my talking for me. I’ve included my outline notes at the bottom of this if you are interested.

I began my talk by going back to last year. About July or August of 2008 we noticed that the insurance company was no longer paying my bills for my medical equipment and supplies at the correct level. So began the trip through an Alice in Wonderland experience of dealing with my Durable Medical Supply Company, Anthem Insurance of Indiana and Blue Cross Blue Shield Insurance of Illinois. We would call the Durable Medical Supply Company about the billing errors and they would call Anthem Insurance of Indiana and then would call us back saying everything was corrected. Only it wasn’t. A month or so would go by giving all concerned to get the corrections through the billing cycle and we would still be receiving incorrect bills. So P would make more phone calls. She would call all three companies involved only to be told by each company that it wasn’t their fault so they were not able to correct the bills. At last we reached the stage when we began receiving collection phone calls about the amount owed the Durable Medical Supply Company. We would explain the situation and would be told that “yes the person calling did see a note on our account about the problem.” Finally P filed a complaint with the state department of insurance. As result of this, an Anthem Insurance of Indiana representative called us and promised us that she would get this corrected.

We thought “great, problem over.” We soon learned that the billing issues hadn’t been resolved and the collection phone calls continued. Then one afternoon I received one of the collection phone calls and I GOT MAD. So I started researching the issue of Anthem Insurance of Indiana billing approval errors. I discovered a large number of articles about Anthem Insurance of Indiana dealing with this issue for some time. I also researched and found out who owned Anthem Insurance of Indiana. I also found a number of email addresses for the company that owned Anthem Insurance of Indiana.

I wrote a lengthy letter about the issue we were having with getting my medical bills from the Durable Medical Supply Company approved for the correct payment level by Anthem Insurance of Indiana. In my letter I included the Anthem Insurance of Indiana representative’s name and phone number and all of the internet links of the articles about this problem. I then emailed this rather lengthy article to all the email addresses I could find for the Durable Medical Supply Company, Anthem Insurance of Indiana, the company that owns Anthem Insurance of Indiana, Blue Cross Blue Shield of Illinois, my state and national senator and representative, Indiana Department of Insurance,and a number of local and state newspapers.

The following Monday when P called the representative, she said that she had received a number of phone calls and emails about my situation and was working on resolving it once and for all, which I am glad to say she did.

My daughter K mentioned this to her professor who asked if I would come and talk to the senior Social Work class about becoming my own advocate and the need for advocates. As you will see from my outline, I gave a brief personal history, and P and I talked at length about the stress a chronic illness places on a family, and about how helpless and hopeless receiving collection phone calls makes one feel. Especially, when we had been spending hours on the phone trying to get someone to listen and help us.

I also took the opportunity to talk to this class about the importance of support groups for the primary care giver to a chronically ill person.

I thought our talk went well. At least I hope it did. I would like to thank my daughter’s professor for allowing me to tell our story.

Here is the outline I worked from this morning.

Social Work Class Visit OUTLINE NOTES

• Brief History (1 Minute max) (I don’t mean to spend much time on any of these items)

• Hip operation at age 12. (This is to show how and when I decided to remain as independent as possible even when not being able to fit in with the rest of my classmates.)
• Doctor telling me not to let my hips dictate my life.
• Doctor telling me to chose a career that would allow me to sit when the time came.
• Track meet Hays Kansas and how I refused to give in until they waved me off the track so they could start the next race. This is how my stubborn, independent spirit was formed.
• After multiple hip replacements & revisions, it became clear that it wasn't just my hips causing the problems but that there was some neurological process going on.

• How I continued to educate myself in order to work as long as I could. (1 Minute max)

• Because of my home situation, and the schools in western Kansas where we lived I wasn’t college material. However, I came up with a plan that allowed me to receive the education I would need.
• Being handicapped made me strive to be the best employee at each job I had.
• How employers would tell me that if I couldn’t do the job, I was out of a job.
• After I found out that people seemed to treat me differently on job interviews, I would go on job interviews leaving my cane in the car.
• Even after ADA I was told that but that SMMHC modified my work area. And allowed me to work from home.

• However this all combined to make be determined not to be pushed around or pushed to the side.

• After my Tracheotomy (1 Minute max)

• Wrote a book for my Grandson about a Handicapped Person who has two black bears living in his backyard. This book is my attempt to show my grandson how much a handicapped person can do. Also it is an attempt to show that you treat a person with a handicap the same way you would treat a person without a handicap.
• Harry and Tom
• Use my laptop to read newspaper and magazines.
• Use my laptop to communicate with family and friends.

• How frustrated I get when people ignore me because I can’t communicate for long periods of time on the phone. (As much time as it takes) (Tell how it bothers me that I am not able to help Pam make needed phone calls)

• How I use the Internet to research companies finding email address in order to communicate with companies I need something from.
• Relate how for 6 to 8 months my health insurance wasn’t paying my medical bills correctly.
• How I wrote emails to the insurance company and CC the letter to State and Federal representatives and senators, newspapers, Indiana Department of Insurance, the BBB, and the parent company of my insurance company. Included in these letters was the person’s name and phone number who was responsible for correcting the payment errors.
• How after being ignored by the chair manufacture and unable to hold a phone conversation with store I used the internet and email to get my chair repaired the second time.
• Writing State and Federal representatives and senators on health issues.

• My beliefs (As much time as it takes)

• The handicapped must be their own advocate firm but not confrontational unless they need to become confrontational.
• That we need to change our health insurance system because companies don’t want to pay for the increased cost most people with chronic health conditions have.
• That we need to come up with a way to keep people in their own homes as long as safely possible before they end up in a nursing home.
• That church and other volunteer groups fall down on helping the home bound handicap person.
• Being homebound is LONELY & ISOLATING.
• The family become ISOLATED and loses their identity. They become "the family of the handicapped person" not people in their own right.

• My biggest failure

• Trying to get my church to start a Caregivers Support Group. I'm not sure that is your failure - I think it is the churches and the people who were doing it not being aggressive enough. Caregivers have to be pushed to take care of themselves. (This note was added by P.)

• Favorite Movies
• Million Dollar Baby
• Rory O’Shea Was Here
• Door to Door

• I am not certain how you as Social Workers and those of us as friends and acquaintances of the handicapped can influence the handicapped to become their own advocates. I do believe that we as a society gain from a personal experience with handicapped individuals.

Fun Weekend

2009-03-16T04:52:00.000-07:00

Friday almost everyone headed to Iowa where my sisters and sister in-laws were having a combined shower for our youngest son and his fiancée and our youngest daughter and her fiancé. P left mid morning on Friday and the other 4 left around 6:30 that evening.

Of course, as always, when everyone has left me someone must come to stay here. So our second son J drove down from his work to stay here this weekend. Now son J. not only loves to cook, he also is an excellent cook. Soon after he arrived Friday evening he started a No-Knead pizza dough, which requires 12 to 24 hours of rise time.

Saturday morning J started loads and loads of laundry. He told me it is more convenient to do laundry here rather in the laundry room in the basement of his apartment building where he has to share the washer and dryer with the other three tenants. After that he went to the grocery store for the rest of the groceries we would need. When he returned he started marinating the chicken for Sunday’s Tandoori Chicken.

Early Saturday afternoon we made Chex-Mix. Then he took my laptop apart in order to replace the CD/DVD drive and the Mouse Touch Pad. For Saturday supper we made the pizza using the No-Knead dough and placing thinly sliced tomato, fresh basil and fresh mozzarella cheese. It was so simple and yet so fresh and delicious. After supper J started a batch of No-Knead bread and Sunday’s breakfast, a batch of overnight yeast waffles.

Sunday morning we had a GREAT breakfast of home made, not store bought, waffles. They were so light I thought they might fly from my plate and fly around the room. Lunch was Tandoori chicken done on the grill, along with grilled mushrooms, zucchini squash, cherry tomatoes, red pepper, and red onion, and bulgar wheat fixed like couscous with a couple cloves of garlic, ½ a red onion and ¼ cup of diced red pepper. We are now both trying to stay awake until it is time to bake the No-Knead bread.

The two couples arrived home from Iowa late this afternoon just as J was baking the bread. After a supper of hamburgers done on the grill everyone headed to their homes to get ready for another week of normal activity. P is staying in Iowa over Sunday night and coming home Monday.

So my fun weekend comes to an end. Well not exactly to a complete end, I will be having some delicious bread with cheese for breakfast.

P.S. This past weekend reminded me of the one week a year I would spend at my parents. Before my mother was in a nursing home, I would spend a week at home with both of them. After Mom was in a nursing home I would spend a week with my dad. We would spend our days doing the same thing that J and I did this weekend. Of course our days would always include visiting mom in the nursing home, but when Dad and I were at home we would spend time on his computer, in the yard, visiting with each other and doing things together. We would decide what we wanted to eat, make a shopping list, go to the store and then make the meals together. I think there is something in our human nature that draws people together when preparing food.

The Golden Goodness of Bread

2009-03-05T09:34:00.000-08:00

Last night I asked P to start some No-Knead whole-wheat Bread, using a recipe from my sister G. She started the bread just before she went to bed. When making whole-wheat breads, we like using whole wheat flour that my brother D buys for me when he and his wife visit their daughter in Michigan.

When he and his wife travel to Michigan they often spend the night with us. Then when in Michigan they like to shop at a country store that sells stone ground flours. I really like the stone ground whole-wheat flour because it has more texture then the store bought whole-wheat flour we can buy in the grocery stores. I also think this flour has a nice subtle nutty flavor. So I usually ask them to buy 10 – 15 pounds and drop it off on their return trip.

This morning when I rolled into the kitchen at 6 AM to make some coffee I discovered a delicious yeasty bread dough odor. After P left for work, daughter K punched down the bread dough, divided it into 2 halves and placed it into 2 bread pans I had taken out of the cupboard and greased. I have made this bread enough to know that one must have the bread pans well greased. We covered the bread pans and left them to do their business of rising to double their size.

About one hour ago, I went to check on the bread and discovered the time had arrived to bake the bread. After the oven had reached the correct temperature I placed the bread pans in the oven, set the timer and returned the den. As I sat in the den the delicious smell of fresh baked bread wafted around the door filling the room.

The timer went off, I removed two golden brown loafs of bread from the oven, took them out of the bread pans and put them on the cooling rack. They are now waiting for me to use some for my lunch. I think today’s lunch will be a chicken salad sandwich, small salad and a piece of fruit.

In my opinion homemade bread is always so much better than grocery store purchased bread. After reading this, I am reminded of the children’s story about the little red hen who asks everyone to help her make the bread and no one wanted to help make the bread. However, everyone was willing to help her eat the bread. At our house everyone helps make the bread and eat it. Oh and here is the bread recipe.

Overnight No-Knead Whole Wheat Bread

4 c. bread flour
2 ½ c whole wheat flour
1 tsp. yeast
½ c. warm water (110-115 degrees)
2 ¼ c warm water
2/3 c dry milk
¼ c sugar or honey
¼ c melted shortening or 1/3 c oil
1 TBSP salt or less (I use 2 tsp.)

Start bread in the evening. Dissolve yeast in ½ c water. Add remaining ingredients. Mix well. This will be rather moist dough. Place in lightly greased bowl and let rise overnight. Punch dough down every hour until you go to bed. In the morning shape into loaves (8 ½ X 4 ½ or 9 X 5) and let rise until doubled. Bake at 400 degrees for 35-40 minutes or until bread sounds hollow when tapped. Remove from pans. Cool on wire rack.

*Use potato water or add a couple TBSP potato flakes for a very light bread

The Scare

2009-02-15T07:07:00.000-08:00

Well this morning it happened. I asked daughter K to help me change my drain sponge and tracheostomy collar. Things were going along great; I removed the old collar and drain sponge. K placed the new sponge and opened the collar. This was when I decided to help her adjust the new collar’s length. What a mistake on my part because the next thing I remember is catching my entire Shiley Tracheostomy Tube in my hands.

At this point everyone became excited because K had never replaced my Tracheostomy Tube. It was a good thing it was Sunday because P was at the kitchen sink and not at work. She started telling K how to put the Tracheostomy Tube back in. However, I also was attempting to put it back. In my panic I had my head positioned too far back causing the opening to close. Finally P removed her dishwashing gloves, cleaned her hands and replaced the Tracheostomy Tube.

This happened because I varied from my routine. Instead of reaching for the collar, I should have allowed K to adjust it without my help. Normally P changes the drain sponge and collar. And when she is at work and the home aid is here, I always adjust the new collar before removing the old one.

I guess the old saying “Haste makes Waste” is true. This could have turned out a lot worse then it did. I am certain I will be more careful in the future. I just hope I remember this for a long time so that I don’t repeat this mistake.

Letter to my Brother

2009-01-26T07:05:00.000-08:00

C,

Have you ever played cribbage? I used to play cribbage for hours with my college roommate. After we were married P and I used to play a lot of Cribbage. But it seemed that once we were busy with the kids cribbage was left in the closet.

However, as you know it is important for the homebound to keep interested in life. And I was becoming bored with working Sudoku puzzles and watching movies all day long, I save reading books for at night. Anyway I began thinking that I needed an additional activity. That was when I thought about cribbage and wonder if there was a free computer version. After some searching on the Internet I found one I like.

Let me tell you C Cribbage is a game of skill, and while you have no control over which cards you are dealt, you have a lots of control over how you discard and play the remaining cards. However, I have noticed that this can become extremely interesting (read difficult) on the first day of a new pain patch.

I also have found a couple of good things about being stuck in bed, see Change of Scenery. You get to keep track on the neighbors. Also the Southern Gospel All Quartets Web Radio (web based) station sounds so much better on my stereo then on the PC earplugs I use when in my chair. In the late 1960s early 1970s I remember going to listen to some great Southern Gospel Quartet groups with my Uncle H's family. I was going to DeVry Institute of Technology at the time and staying at my uncles on the weekends. So it is nice to find these old groups are now on Internet radio.

Your brother,
P

Neighborhood Watch

2009-01-20T06:26:00.000-08:00

Yesterday morning I looked out the front window and noticed a beat-up scruffy looking vehicle parked in the street in front of our neighbor’s house. As I watched one young man in baggy street clothes got out of the truck, stood looking at our neighbor’s house. After a short wait he walked up to the neighbors house where I could no longer see him. A short time later, he walked back to the truck and the other man got out of the vehicle and both went towards D’s house.

We live in duplex houses and this past Christmas the lady who lived in the other housing unit by D passed away. Knowing this and knowing the fact that D was advanced in years caused me to begin to think of all the horrible things that may be happening. Because I didn’t have D’s phone number I called our next door neighbor and asked her to call D. A short time later she called me back to let me know that D was all right. It seems that these two scruffy looking men driving the beat-up vehicle were from the local television cable company. D had changed from cable television to a dish television system and these guys were from the television cable-company. They were there to disconnect the cable going from the junction box to D’s house.

D thanked both S and myself for calling her because she was also worried when she saw those two guys. If the truck would have had a sign on it stating which company it was from and if the guys had been dressed in some sort of uniform, I wouldn’t have been worried. However, everything seems a little suspicious from the way the vehicle looked, the way they parked it, the way they behaved, to the way they were dressed.

I may have been a nosey neighbor, however I would rather be called nosey then have to explain why I hadn’t been concerned enough to make a phone call.

Change of Scenery

2009-01-15T07:02:00.000-08:00

Yesterday I decided to have a change of scenery. Just after Pam backed down the drive to head off to work I went into the kitchen to make some tea. As I rolled into the kitchen my vent stopped working and started beeping. I quickly turned around and raced into my bedroom where I have the spare vent set up. After connecting to that vent I tried without success to get my vent to work. I was unable to reset it or to turn it off. So I transferred from my wheelchair to my bed and somehow managed to turn the wheelchair around. I then removed the defective vent and install the backup vent on the wheelchair. After that transferred back into the wheelchair and brought the still beeping vent into the den. I then brought the external humidifier out of the closet, filled it with water, and plugged it in so it would begin to warm the water.

I spent some time moving my Nebulizer, computer, and a number of other items I have by my chair from the den to my bedroom. Finally I was able to go into the kitchen and make my tea. By the time I settled into the bed I was ready for some rest and a nice cup of warm tea.

I then sent P an email telling her what happened and asking her to call the medical supply company and report what happened. The respiratory therapist called to tell me that he would come out early afternoon to see what was going on. Once he came he spent a long time on the phone with the vent manufacture. When he was finished with the phone call he told me they had decided to send my vent back to the manufacture for repair. Because my backup vent doesn't have an onboard humidifier I will have to spend my days in bed with the vent that must use an external humidifier. My bed is a hospital bed, which is a good thing, so I can adjust the head into an upright position allowing me to sit up.

The nice thing about all this is I get to look out of a different set of windows. Because my bedroom is at the front of the house, I now watch the comings and goings of the neighbors.

Christmas 2008

2009-01-01T07:01:00.000-08:00

Early morning Saturday December 20 my youngest son K and his fiancée C loaded boxes of my backup medical equipment, medical supplies, a couple boxes of Christmas presents and a small case of clothes. We left and started driving through the city heading toward my son C who lives in Madison. As we drove through Chicago, we noticed all the northbound entrance ramps to the expressway closed by Chicago police. We never found out the reason why the ramps were closed, but we think it might have had something to do with President elect Obama. One of the nice side effects was that we did not have much traffic to deal with on the way north out of the city.

A couple of hours later we pulled in my son’s driveway in time to see him and my four-year old grandson L shoveling the last of the snow from the drive. Once the boxes had been removed from behind my wheelchair I rolled down the ramp, up the front walk, and up the ramp my son C had made into their house. Once everyone had carried all my medical supplies and boxes of Christmas presents into the house my youngest son K and his fiancée C took my son’s car and spent the rest of the day with her mother.

I spent the rest of Saturday and Sunday resting up recuperating from the trip. By Monday I was feeling well enough to watch my grandson L for a couple hours while his parents had to be away from home. We watched a TV show I had taped about logging in a swamp, a show with a lot of large logging equipment, something a 4-year old boy liked. I also spent a couple hours Tuesday afternoon watching the same show while my son and daughter in-law had to work. The plan had been for my wife P to drive up Tuesday morning arriving in time to watch L, however her travel was slowed because she spent the first couple of hours creeping through a snow storm while driving around Chicago.

Each morning I would wake up around 6:00 – 6:30 in order to take my medicine and use my Nebulizer. Each morning as soon as I would sit up, L would pop out of his room to help me. After the Nebulizer was started, he and I would sit on the couch, under the blankets looking at his books. He would read the books to me because I can not talk for long periods of time. So while I turned the pages, he told me all about the stories. He and I changed our routine after Christmas, instead of reading we would sometimes play with his expanded collection of Matchbox cars. It is truly amazing how those cars could race up and down the mountains we made out of the blankets.

The rest of the family started arriving on Christmas Eve. Son J rode up on Christmas Eve with his brother K and C. Daughter K and her fiancé K came up Christmas morning because of spending Christmas Eve with his family. On Christmas Eve I received instructions not to get too excited about opening Christmas stocking early Christmas morning. Everyone wanted a relaxing morning. So I patiently waited until after a breakfast of Monkey bread and scones before opening my Christmas stocking. Shortly after we opened our stocking daughter K and K arrived. When they walked in Mr. K was wearing the Santa outfit he gave me two years ago and which I re-gifted to him last year.

After everyone settled down we opened the rest of our Christmas presents. We also passed around a couple of catalogs from World Vision, CRWRC and Children's Hunger Fund so each person could select a gift for those who don’t have as much as we do. Before we started exchanging presents P started to prepare some things to munch on. She turned on the oven and a short time later the smoke detector went off. The problem was traced to a breakfast sausage that had been left in the oven and was now on fire. Even with opening doors and windows it was still smoky in the house. When you look at some of the photos I have it appears that we are opening presents in a cloud of fog.

During Christmas afternoon some took naps, L had his uncle K assemble some of the gifts he had received. Son K read a book his sister had received. I don’t think he agreed with the author’s viewpoint because he would often stop and tell everyone how his opinions differed from the authors. Those in charge of the Christmas meal were busy in the kitchen and I was busy with my camera. After Christmas dinner, some returned home because of having to work on Friday. The rest of us spend a relaxed evening. Early Friday afternoon everyone else left for home. It was a great Christmas and I have between 250 – 300 photos taken during the 10 days I spend there. Of course most of them are not usable photos for one reason or the other.

Saturday afternoon my daughter in-laws parents and sister arrived. We had a wonderful time Saturday and Sunday visiting with them and I once again I had the camera out taking photos of them playing with L and his presents.

Early Monday morning C and P loaded the van with all my medical equipment and we returned home. After spending the best part of ten days away from home it was good to be back home again.

One thing L and I did was to show each other how both of us could make funny faces. In fact L took my camera and took a couple of photos showing everyone that his Grandpippy still has a bit of the 4-year old in him.

College Visit

2008-12-06T09:32:00.000-08:00

A number of years ago when our son J was a senior in high school, he visited a number of colleges trying to decide which college he would attend. One of the schools he was interested in was in northwestern Iowa about a ten-hour drive away. If memory serves me correctly both he and his younger brother and younger sister had a Thursday and Friday off school. We decided that it would be a nice idea if the three children and I drove to Iowa leaving their mother at home giving her some time to herself. I called my parents, who lived in the middle of Iowa, and arranged for my father to meet us at a rest stop on Interstate 80. The plan was to have the younger two spend a couple days with their grandparents while J and I checked out this college J had express interest in.

On Wednesday night we placed our suitcases in the van. Then early Thursday morning I quietly woke the three children up. I think it was either 3:30 or 4:30 in the morning when we crept out of the house trying not to wake their mother up. I remember we all were excited to be on a mini-vacation. Also I was hoping to allow P’s time alone to begin the moment she woke up. However, like a lot of plans this one didn’t go as I had intended because when I closed the door to the house P heard it close and woke up.

I drove for the first hour before stopping and allowing J. to drive. He and I then shared the driving responsibility for the remainder of the trip. About mid-morning we met my father at a rest stop, the younger two children started their own separate vacation at their grandparents, and J and I continued on our journey to northwestern Iowa. I must say that spending hours in a car with one of your teenage children on the way to visit a college allows you the opportunity to talk. We had taken along a number of “A Prairie Home Companion” tapes. As we listened to Garrison Keillor’s monologues we talked about the subject these monologues brought to mind.

About one hour before arriving at the college as day turned into evening it started raining. By this time we were both tired from the early rising time and driving all day. I remember how glad we both were to arrive at the college. While J stayed in one of the dorms that night, I spent the night in a local motel. On Friday, J visited some of the classes and talked to various people from the college, and I spent the day listening to various people from the college. As the visiting students were told how great this college was and how they would enjoy spending their college years here, the parents were told why we should send our children to this college, what the cost of the tuition, room and board, and other expenses would be. I did manage to spend some time with one of my nieces who was attending this college and spent some time with my 8th grade teacher who now was a professor at this college.

By mid afternoon J and I were on our way once again. This we drove the Iowa state highways across the northern part of Iowa. We were heading to my sister F and brother in-law R where we planned on staying the night and the next day. When we arrived, my sister M, who lived nearby, and family were there also. As I remember it, it was an evening of pizza and catching up on each other’s news.

I spent the next day visiting with my sister F while J spent the day helping his uncle R, who has his own electrician business.

Early Sunday morning, but not as early as we when we left home, J and I left to drive to my parents in order to pick up the younger two children. After having lunch with my parents, the four of us started the trip home. It was during this part of the drive that the two younger children talked and talked telling us all about their stay at their grandparents. The highlight of their stay seemed to be when Grandma let them play in the creek at the back the yard. We would never allow the children to play in the creek whenever we visited, however, my mother grew up on a farm in Michigan and thought children should be allowed to explore. So while my father was conducting a wedding one afternoon Grandma allowed the two grandkids to explore the mysteries of the creek.

Even though J decided not to attend that college, all these years later the four of us still talk about that mini-vacation.

Thanksgiving Turkey Fried or Roasted

2008-11-30T13:22:00.000-08:00

This past Thursday was Thanksgiving and we had Thanksgiving at our house. We decided to have dinner later in the day rather than having a mid-day meal. This would allow our daughter K and her boyfriend to go to his family for a mid-day meal and still be by us later in the day.

Last Christmas I received a Turkey Fryer which we have used a number of time this past year and decided to use it this past Thursday to fry the turkey. When Thursday came, it was cooler then we hoped for. However, the boys and I decided we would be able to fry the turkey as long as the wind didn’t start blowing. A slight breeze would be OK but a stronger breeze makes it difficult to heat the oil to the correct temperature and hold that temperature while frying the turkey.

Thursday early afternoon we began to have doubts that we would be able to fry the turkey because the breeze was turning into a wind. When we checked the local weather we discovered that we could expect 9 – 12 mile per hour winds. The boys set up the fryer, filled it with oil and started the burner. The breeze/wind seem to become stronger as we watched the oil try to heat up. At one point a gust of wind blew out the fire in the burner. That was when the decision was made to not fry the turkey.

Now we had to come up with a plan to somehow cook the turkey in time for dinner. The first decision we made, or maybe we realized, was that our Thanksgiving dinner would be at least one hour later then we originally planned. The second decision we made was to remove the thighs, legs and wings from the turkey. We hoped this would allow us to cook the turkey in a shorter amount of time. We started to preheat the oven while we prepared the turkey. However when we placed both roasting pans in the oven we discovered that we couldn’t close the oven door.

As P and the boys were discussing this unexpected turn of events, I mentioned that our neighbor had told me they would not be home for Thanksgiving. They had gone to spend Thanksgiving with her parents at her brothers. So they placed the roasting pan with the turkey breast in our oven and the other roasting pan in our neighbors oven. Because the thighs, legs and wings don’t take as long to cook as the turkey breast, we used the neighbor’s oven to cook the vegetables.

While we didn’t have the fried turkey as we hoped, and we didn’t have dinner at the time we originally hoped for, we had a great afternoon spending the extra time visiting. It was a great Thanksgiving. In fact I spent so much time visiting with everyone, I am still recovering two days later.

I must admit I am surprised at how tired having Thanksgiving made me. This is making me wonder how I will be after we travel to our son, daughter in-law and grandson for Christmas.

Working Ventilator At Last?

2008-11-24T12:51:00.000-08:00

The representatives from the company who supplies me with the ventilator and the ventilator manufacture were just here. They came as a result of letters I wrote about issues I had with a number of their ventilators.

I must admit that I was extremely nervous about this meeting. After all I had written a number of strongly worded letters of complaint. However, the meeting was very cordial. While the respiratory therapist was setting up the replacement ventilator I talked to the other two people. They asked me to show them how, being ventilator dependent, I managed to stay home alone. I showed them the emergency bag hanging on the back of my wheelchair containing my Ambu bag, spare ventilator circuit connectors and exhalation values. The emergency bag also contains a page with ventilator settings and a list of all my medications.

I also showed how I came up with a method of using a funnel and part of a circuit to refill the humidifier bottle without having to remove it from the ventilator. This method means I am able to fill the bottle without having to disconnect the entire circuit, something that I would not be able to do on my own. They were impressed with how I have my wheelchair set up allowing me the access I need to my ventilator. And how I have small pieces of Velcro on the three vent control buttons I must use by feel when sitting in the wheelchair. I showed them how when we had this house built we changed the layout of the kitchen of the kitchen allowing me to position my wheelchair between the refrigerator and the end of the counter. This allows me to open either the freezer or the refrigerator, remove items and place them safely on the counter. I also demonstrated how the counter by the sink and the counter by the stove are also close enough to each other allowing me to safely transfer hot dishes of pots between the counters and from the last counter to the table. They both said how amazed they were at my independence.

I guess because P and I have always thought about ways I could do things that would allow me to safely stay at home, that we are always surprised when people tell us how amazed they are at how self sufficient I am. When I mentioned this, they both said that in their experience most ventilator patients don’t enjoy the level of freedom I enjoy.

I said we will switch the ventilators this evening when P gets home from work. I didn’t want to switch ventilators when no one would be home in case this vent fails, however, I did try the replacement ventilator before everyone left and I feel that at long last I have two working ventilators with built in humidification.

Then when we switched vents last night, the new vent gave "Humidifier Error" after only 30 seconds of use. This did and did not surprise me because this was the same vent that I had in the first week of September and at that time it worked for 3 hours before giving the "Humidifier Error" message. After a number of phone calls last night we were told they would continue to work at getting me a working ventilator.

It Pays to Write

2008-11-18T04:56:00.001-08:00

Earlier this year my doctor put me on 24-hour humidification. So I had to have ventilators with the additional humidification circuitry. I have two ventilators incase something happens to one of them I always have a backup. Every month I swap out the active vent with the backup so I am certain both ventilators are in working condition.

At the end of August I had to have one of my ventilator replaced because it failed. So at the beginning of September the company brought out a replacement ventilator. They have yet to bring a working one. Some of the vents they brought worked for a short time (hours) others haven't worked at all. So finally I decided the time had come to start writing letters. I wrote a letter to the company who supplies me with the ventilator, to the ventilator manufacture, to the Joint Commission on Accreditation of Healthcare Organizations (JACHO), and on the advice of my son and my sister to the FDA.

I waited and after a number of weeks with no response and a couple more failed ventilators, I wrote everyone another letter. This time I received personalized not form letters. I even received phone calls from the ventilator manufacture and the company who provides me with the ventilators, who it turns out, repairs the ventilators.

Then yesterday the regional manager of the company who supplies my ventilators called and asked if it would be ok if she, the local branch manager, my respiratory therapist and a representative of the vent manufacture, come next Monday afternoon with a working ventilator in order to resolve this issue. It turns out she has to write a report and send it to JACHO in response to my complaint to that organization.

So as I stated in the subject line, "It pays to write".

A Rant About Failures

2008-10-02T05:26:00.000-07:00

Sunday morning while getting ready for church, I noticed that one of the arm pads on my wheelchair had a large piece cracking off. This really upset me because the arm pads had been replaced on August 26, 2008. Monday morning I called the Wheelchair Repair Facility only to be told that their computer system was down. However, the person told me that when the computers came back up they would contact me. Monday afternoon while waiting for my return phone call I set up my second ventilator, which I had just received from the company that provides my medical supplies. I switch them out every 2 weeks and it was time to make the switch. When daughter K came home she switched out the ventilators.

Tuesday morning I just didn't feel well, I couldn't put my finger on why I didn't feel well but I didn't. I spent the morning waiting for my return phone call from the Wheelchair Repair Facility. When they didn't call me back, by mid morning I called them. This time I talked to a different person who, after I explained my problem, told me they didn't warranty the arm pads. So I asked to speak to a manager. The manager said he would order the arm pads and get them to me. I hope that he does because I have his name and this particular Wheelchair Repair Facility is a member of JCAHO and a number of other industry organizations. If I don't receive the arm pads in a couple weeks they all will be receiving letters of complaint.

Early Tuesday afternoon I figured out why I wasn't feeling good. It was because the replacement ventilator would periodically malfunctioning on the exhalation cycle. So when K came home we switched ventilators again. Yesterday I wrote a letter of complaint to the ventilator manufacture reporting the fact that the company that provides my medical supplies has brought me 5 ventilators in the past 9 months and only one has lasted the entire 9 months. Four of the ventilators have failed right out of the box. I stated that I believe the company that provides my medical supplies also does their own ventilator repairs. In my letter I asked if the technicians, who repair these ventilators, have to be certified by ventilator manufacture. I also asked if the ventilator manufacture is able to access the repair records of these ventilators. And I asked about possibility of the failures being covered by repair service bulletins. I sent a carbon copy of that letter to the company that provides my medical supplies.

I have now started keeping a list of ventilator serial numbers, date of delivery, date of failure and what the failure is.

Is It Time To Party

2008-09-11T05:59:00.000-07:00

They are off to Las Vegas. That is P and our son J left early this morning to catch their flight to Las Vegas. P received the trip as a reward for the amount of sales she made at work. She will be attending sales training sessions Thursday afternoon and most of the day Friday. I can’t tell you how happy I am for her to receive this reward for all the hard work she does at the bank.

Once she received word that she was going to Las Vegas she asked our son J if he would like to go along with his mother. He jumped at the chance. I am not certain what all they have planned, but there is so much to do and see that I am certain they will have fun filled days. There is so much to do that they decided to extend their stay over the weekend and return on Tuesday. I know they plan on renting a car and traveling to the Grand Canyon where they are staying overnight.

Of course this raises the question of “While the cat is away, should the mice play?” I, of course, am staying home. My Home Health Nurse has arranged for extra visits from the Home Aid while P is gone. This will help a lot because our daughter K is back busy at college. I had also wondered how I would make it to the doctor office over the weekend for some medical tests that had been ordered. However, Tuesday when the nurse was here, I mentioned my concerns to her and she said she would call my doctor, get the orders for the tests and come and take care of them.

I talked to our youngest son K and he will bring me to church Sunday. Hopefully I can talk him into staying for lunch after church.

Now the question is do I party for the next couple of days? Or do I let my energy dictate my activity and sit here doing Sudoku puzzle, watching movies, and reading books?

Labor Day 2008

2008-09-02T07:17:00.000-07:00

Once again I have an infection. Last week Tuesday when the Home Health nurse was here my temp was 99.0 up from my normal 97.4. By Thursday evening I was running a 100.2. Friday morning we called the doctor who prescribed an antibiotic and some tests. Over the weekend my temperature started going down and I am beginning to feel better. However, because of this latest infection, I spent the weekend at home.

Yesterday, Labor Day, we had P.’s sister, brother in-law, nephew, niece and her family over for evening indoor picnic of hamburgers on the grill. I talked too much so am extremely tired today. It was fun to talk to everyone.

Today, I wait to hear back from my doctor concerning the tests I had on Saturday. My older brother and sister in-law are stopping on their way back home from being at their daughters. When in Michigan they like to stop at a store that sells stone ground flours so I have asked them to purchase some for us. We have used the stone ground whole-wheat flour in the past and like the flavor and texture it gives the breads.

With the Many Visitor Friday and a busy Labor Day evening, I will post this and do some Sudoku puzzles.

Many Visitors

2008-08-29T11:59:00.000-07:00

August 29, 2008 started early for me. I woke up at midnight when my sister in-law closed the front door. My brother and sister in-law were traveling from their home in Iowa to visit their daughter, son in-law and granddaughter in Iowa. They left their home after work and drove here arriving in the middle of the night. This morning we visited for a couple of hours, after which they headed off to their daughters.

Almost as soon as they left, the home aid walked in to help me shower and get dressed. While I was getting dressed, the front door opened and it was the oxygen deliveryman. He had been here earlier this week, when we noticed that both oxygen tanks were empty. At that time he told me he would stop back today to weigh the tanks to see if they were losing oxygen faster than expected. Everything appeared normal so we will just keep an eye on the tanks.

A short time later the Occupation Therapist showed up to discuss a different design shower chair. Hopefully this new design will make it both easier and safer for my to transfer into and out of the shower.

I was just finishing up my lunch when my younger brother and his wife walked in. They were on their way from home to a wedding in Michigan. My brother wheeled in his bicycle, the bicycle he is riding on his RSBT. We spent an enjoyable couple of hours visiting before they left to continue their trip.

What a busy day to finish a busy week.

Determination

2008-08-27T08:00:00.000-07:00

On Sunday July 15, 2008, my younger brother started his Renewing Spirits Bicycle Tour. You can read about why he wanted to do this cross-country ride at his RSBT Blog.

I used to love bicycle riding, not that I rode as many miles a year as my brother. Then I became ill and was no longer able to ride. When my brother told me about his plan for the RSBT I thought, “great, this will be a way for me to ride along side of him.” He on his bike and I in my wheelchair at home.

On June 15, 2008 the RSBT got under way. For the next couple of weeks my brother worked his way through the mountains to the Great Plains. Then on July 4th my brother crashed. At the time, because of my brother’s injuries, (4 broken ribs, broken collarbone, and bruised sternum), we all thought the RSBT was finished. Two weeks later my brother decided to try and complete the RSBT yet this year. On August 15, 2008 six weeks after his crash, my brother started his ride at the place where he had crashed.

When I talked to him this morning, he told me that he has completed 2,375 miles of his RSBT. This means he has finished 2/3 of the tour.

Way to go Brother.

A Birthday weekend

2008-08-25T12:10:00.000-07:00

What a weekend! Late Thursday night, son J came down to clean and detail his car on Friday. Before he started on his car, he started the smoker and put a 13-pound ham on to smoke. It took 8 hours to smoke the ham, which gave him a lot of time to work on his car. Once the smoker and the ham are started there really isn't much you need to do except every hour or so check that the temp in correct and there is enough wood and water in the smoker.

By suppertime the ham was finished and the neighbor came over asking if we were making bacon. After supper he finished cleaning and detailing his car and took a package of ham home.

Sunday morning J once again started the smoker. This time he made BBQ ribs. We were aiming for a 4 PM dinner, which meant the ribs would be smoking at a low temp for a long time. After church my daughter K and her fiance K took off for Trinity College where K's younger brother is starting as a freshmen. Also about 1:00 our son K and his girl friend C showed up. K made his Famous Corn Bread. We also had sweet corn and a medley of vegetables which we grilled using my vegetable grilling basket. If that wasn't enough, we all managed to have a small piece of Cold Stone Creamery peanut butter ice cream cake for dessert.

After all that, there were presents, a couple of cards, one funny one from my wife. Shortly after dinner, my brother in-law R called and sang Happy Birthday and after he talked for a while, sister F got into the act and sang Happy Birthday. She offered to sing Happy Birthday a second time only she didn't thanks to her son M who convinced her not to.

It was a great weekend.

Tribute To My Brother

2008-07-06T06:17:00.001-07:00

You and your brother are a couple of hundred yards north of home, standing in the middle of the road. You and your brother are discussing what you both want out of life.

My younger brother and I had that experience. I had graduated High School earlier that summer and he had just finished his freshman year of High School. One day that summer just before I was about to leave home and go to Chicago to attend DeVry Institute of Technology we took a walk up the road north of our home. There we were in western Kansas in the August heat standing on a small bridge over dry creek, discussing what we wanted out of life.

I wanted to survive Chicago and DeVry. I wanted a good job, a nice place to live, and so on and on we talked. Eventually our discussion arrived at the point where my brother told me he thought my goals were to attain the average things of life. He told me that he would like to enjoy the good things not the average things. I don’t know if my brother remembers this discussion, but I have never forgotten it.

So over the years, as I was busy raising a family, continuing my education, and building my career, I watched my brother raise his family and build his career. He made it through college. I watched as he and his wife worked his way through a number of years of graduate school. I was proud of him when he took his first postgraduate job in a small town in southwestern Wisconsin. A few years later, it was with even greater pride that I watched him take a job in a town in Iowa and work to build a small clinic into a large clinic with a satellite clinic in that state’s capitol.

Over the years my brother continued with his love of bicycling. He saved to purchase a Merlin bicycle frame, as he told me it wasn’t an average bicycle frame it was a good bicycle frame. He put thousands of miles on that bicycle riding in RABGRAI and other sponsored bicycle rides so many times that I’ve lost count. And if you asked him, I think he would have to admit that he also has lost count.

I also loved to ride, but suffer from Spinal Cerebellar Degeneration forcing me to give up riding. The last time my brother and I rode together we had to do it on his tandem bicycle. It was great fun. I don’t remember if that was the last time I road a bicycle, but if it wasn’t the last time, it was close to the end of my bicycle riding days. That week he and I rode many miles on that tandem. For me it was a wonderful experience to spend a week building that family bond once again after spending many years where each of us were busy raising family and building careers.

For years my brother has dreamed about riding across the USA. On June 15, 2008 he started his dream. Instead of taking a Southern biking route across the United States that would mean fewer mountains, he decided to take a northern route. Taking this route meant he had to travel up and over a number of mountains. On Friday July 4, 2008 in the middle of Wyoming after finally riding through the mountains and looking forward to riding through the plains of central USA, he crashed. I don’t know many of the details of how the crash happened, but I do know that my brother broke a couple of ribs, his clavicle, and has other injuries. So my brother will not be completing his dream bicycle ride across the USA this summer.

Brother, I can’t tell you how proud I’ve been watching you over the years. Nor can I tell you how deep my sorrow is at seeing the completion of your dream postponed.

First Walk in a Longtime

2008-07-04T04:48:00.000-07:00

Yesterday the weather was just gorgeous, with a high-blue sky, a slight breeze, and low humidity. June was a cool wet month, I was sick and spent the first week of June in the hospital and the rest of the month recovering, I think the last time I took a walk must have been this past May. So I decided that after lunch I would take a walk.

I am glad I went. As I started my walk the neighbor across the street was working in her front yard so we waved at each other. I saw another neighbor out mowing his grass but he had gone inside before I got to his house. However, on our side of the street, the side with the association home, the yard care company was trimming the bushes in front of the houses. Two people were doing the actual trimming and than four High School kids followed sweeping up the leaves, and pulling weeds.

When I rolled out of our garage at the start of the walk they had just finished our bushes. A half-hour later when I returned from my walk the yard care people were a couple of houses away from our house, the neighbor across the street had finished her yard work, and the neighborhood was quiet once again.

Today is the 4th of July and the weather is suppose to be a repeat of yesterday so hopefully I can take another walk.

The Flu Bug Cometh

2008-06-29T07:57:00.000-07:00

Yesterday I wrote about L coming down with a temperature one day while he was staying here. What I didn't write was that yesterday his Aunt K woke up with a temperature and spend the entire day in bed. This morning she still has a temperature in is once again spending the day in bed.

Also about an hour ago L's Grandma came into the den and announced that she also has a temperature. She is now in bed as well. However L's Grandma didn't go to bed until after she had contacted our entire Mini-Church to tell them we would not be meeting this afternoon because we have the flue. This is one of the problems with scheduling Mini-Church once a month during the summer. If for some reason you have to cancel the meeting suddenly become 8 weeks apart.

I certainly hope that I will be spared this flu. I am always afraid that once I get sick, I will end up in the hospital. So in an attempt to help prevent me catching the flue we once again have the Sanitizing Wipes out and I've cleaned my computer, the phone, and all the remotes.

Of course yesterday, before P realized she was sick, she did the entire end of the month items. She replaced my vent circuit, and my trach. This morning she replaced my drain sponge, and trach collar and all the associated items that are required. I know I have been exposed to the flu, I just hope I don't come down with it.

I guess time will tell.

Let Me Teach You How to Walk

2008-06-28T12:41:00.000-07:00

This past week our 3½-year-old grandson L stayed with us. He road the 3 hours from his home with his two uncles who had spent last weekend camping with L’s father. If I have the story correct, his uncles picked L up after church Sunday morning. When they arrived, he walked out the door with his suitcase in hand. His mother had to follow him out to the car to get a goodbye kiss. He was a little disappointed having to ride in his Uncle K’s car because he wanted to ride in his Uncle J’s car. The uncles solved that problem for him by stopping at Uncle J’s apartment and switching cars. It is amazing the amount of power being the only nephew gives a person.

L arrived late Sunday afternoon and spent the remaining time settling in at his grandparent’s house. At one point Sunday evening I heard him telling his grandmother that he missed his mother. When I woke up Monday morning the den was empty and I found L sleeping in grandma’s bed. L must have heard me making my morning coffee because just as I settled into my chair for that first cup, he came into the den telling me that he had a good night’s sleep and could he watch some TV. So I sipped coffee and watched children’s programming with him.

Later Monday morning, L, his Grandmother, his Aunt K, and the two children she is babysitting this summer took the train downtown to the aquarium.. They didn’t return until late in the afternoon and then L spent the rest of the day telling me all about the train ride and all the things he saw and did at the aquarium.

The rest of the L’s week was busy with going to the gym with Grandma, going shopping for bridesmaid’s dresses with Grandma and Aunt K. One day he helped Aunt K wash the outside of the windows, he spent time in the wading pool, helped Grandma plant some things in a planter. He was basically either Grandma or Aunt K’s shadow.

Unfortunately Wednesday he woke up with a headache and a 101+ fever, so he spent the entire day either sleeping or resting. However Thursday morning he woke up and told us that he was feeling better and his headache was gone.

All the other times L stayed with us or we visited him, he would just accept my wheelchair, ventilator, and Foley as being normal for Grandpippy. However, he must have been thinking about why his Grandpippy wasn’t able to walk. A couple of time this past week he would tell me that I needed to watch him so he could teach me how to walk. He would say, “Grandpippy if you learn to walk you won’t need your wheelchair anymore”. After telling me this he would say “Watch how I walk Grandpippy” and then he would slowly stride around the room-using long exaggerated steps. “There” he would say, “if you learn to walk like me you won’t need your wheelchair.” Later I heard L asking Grandma why his Grandpippy couldn’t learn how to walk. After all L was a little guy and he had learned to walk.

Thursday evening after supper, L stayed home with me while his Grandma and Aunt went looking for material that might be used to make the bridesmaid dresses. So L and I stayed home and watched the movie “Night at the Museum.” There were times during the movie when L was a frightened enough that he wanted to sit in the recliner with me. After watching the movie for a while, he became bored with the movie and went into the other part of the house and started messing with the vacuum cleaner. Just when I was starting to transfer from the recliner to the wheelchair so I could find out what he was up too his Grandma and Aunt opened the front door.

Friday evening his parents drove down and this afternoon they left to spend a couple nights at a downtown hotel with his other grandparents. So now our house is much quieter and emptier also.

I remember how I would look forward to spending time with my grandparents. In fact I have a vague memory of my Uncle Bill taking my older brother and me to a White Sox baseball game. I have stronger memories of walking in the back doors of both of my Grandparents houses. One lived in town and the other on a farm. What I remember most about those houses is the way each house had it’s own odor. So I hope L has great memories about being young and spending time with his Grandparents, Aunts and Uncles. Maybe he will have a vague memory of teaching Grandpippy how to walk.

Wheelchair Races

2008-06-23T08:26:00.000-07:00

Sunday morning I went to church and as I was going into church, I met a friend who had just had an operation on his foot. My friend was in a wheelchair so I challenged him to a wheelchair race. My friend was certain that he would win, but when I won, he claimed I had jumped the start. However, even if I had, I don’t believe he stood a chance of winning. I say this because as we were racing, I kept pulling further and further away from him.

This wasn’t the first time I was in a wheelchair race. When I was 12 I spent 6 weeks in the University of Iowa Hospital when I had both hip operated on for Slipped Capital Femoral Epiphysis. I spent the six weeks in a ward with a number of other children. As happens when you have a number of kids confined to crutches, or wheelchairs, boredom sets in. So it was decided that another wheelchair bound boy and myself would have a wheelchair race down the hall. As the others watched the two of us started racing down the hall. However, our race came to an unexpected stop when we ran into a nurse who walked out of a room into our path. Fortunately the nurse wasn’t hurt, however we had our wheelchairs taken away and were confined to our beds for the rest of the day.

The next afternoon after we had regained our freedom and were back in our wheelchairs, we were sitting watching television. One thing led to another and someone suggested we attempt to balance our wheelchairs on the rear wheels. As you would expect both of us promptly fell over backwards. And also as expected we both were confined to our beds again.

After that I don’t remember anymore issues with wheelchairs. However, as I look back on that hospital stay now, I can only imagine how glad those nurses were when we were discharged.

Years later after I was married and had two young boys we took a vacation to Washington DC. While in Washington DC we visited the National Zoo. Because of my hip problems I would always take a wheelchair whenever we were someplace that required a lot of walking. There I was in a wheelchair being pushed by my two young sons. The Washington Zoo has hills and so the boys would push help push the wheelchair. However, sometimes when we would be going down the hills they would let the wheelchair go letting me free wheel down the hills faster and faster. I would always let them think I wasn’t able to stop the wheelchair. However, I was no-longer 12 years old and knew the dangers of running into people with a wheelchair so I always had the wheelchair under control. I still can see both boys standing at the top of a hill laughing and laughing thinking they had pulled a fast one on their father.

Even though I wouldn’t let a wheelchair run away down the hills of the Washington Zoo, I still have enough child in me to race someone else in a wheelchair into church.

Father's Day

2008-06-16T06:18:00.001-07:00

I did it. I made it to Church yesterday. For some reason I was having trouble talking. I have been having more and more trouble talking. It is such hard work and so exhausting that I find myself actively avoiding conversations. So yesterday in Church I just smiled a lot and gave people the raised thumb indicating that I heard what they were saying. Just before the church service started, our two middle sons tapped my on the shoulder asking me to move so they could go sit next to their mother.

After church the two boys and their sister were home for dinner. We had beef and vegetable kabobs with a nice Israeli Couscous Salad and a broccoli salad. For dessert we had one of my favorites, pecan pie. After lunch the boys and I watched part of a baseball game. What fun that was.

Yesterday evening my oldest son called to wish me a Happy Father’s Day and to tell me how he and grandson L spent almost an hour watching a crew remove a 30-foot log from under a flooded bridge. I guess the crew started with one piece of equipment and ended up with many pieces of equipment in the attempt to remove the log. I understand my grandson was happy because he really loves watching construction equipment.

Over night the weather cleared and today the sun is out, it is cooler and we have turned off the air conditioning and opened the windows. As I write this I can once again hear the birds singing in the bushes.

I think I am starting to wander a bit so I am going to Post this and stop.

Exhaustion

2008-06-13T06:39:00.000-07:00

Wednesday afternoon the front door opened and in walked my Uncle B. He was on his way to a store to look for some new light fixtures to put in their basement. He and I had a nice visit catching each other up on the family news. I didn't think I had talked too much, but think I talked more than I thought.

Then yesterday afternoon a friend called and asked if it would be OK if he came to watch some baseball with me. So my friend showed up we watched the baseball game and I let my friend do most of the talking. I tried to answer with “yes” or “no” or nodding my head. However, I must have talked more than I realized because by 8:00 last night, I could not keep my eyes open enough to read. And what I was reading didn’t make any sense to me.

Now here is it 8:30 in the morning and I, after sleeping like a log for 9 hours, have already taken a 20-minute nap. I think that is one of the worse aspects of this disease, the not knowing when you will do something that will just land you flat on your back.

I was hoping to help P by folding a couple of baskets of laundry, but now I think I better just sit here and try to rest up. I need to rest up because I really want to get to church Sunday. This Sunday is Fathers Day, and I think the boys will come for dinner. Which means I probably will do a bit more talking than is good for me.

Time to post this, do a Sudoku puzzle and try to figure out what to do with the rest of the day.

Picnics and the ER Part 2

2008-06-09T08:40:00.000-07:00

You will notice from the previous post that I had been to the Emergency Room on Sunday and when P and I returned home found the Mini Church picnic at the house.

Monday morning I did not feel any better, my throat was worse, but my temperature was a bit lower. I thought well let’s not panic, lets give the antibiotics a chance to work. Tuesday morning P was teaching a class at the banks home office about 45 miles away on the other side of Chicago. She called me during a mid-morning break to see how I was doing. Because I felt worse and because my temperature had reached 102 F. we decided it was time for a return trip to the ER. She called our church asking them to arrange for someone to come and take me back to the ER. After spending another 4 hours the doctor said the throat culture, they had taken Sunday, showed that I had a yeast infection in my throat, gave me a prescription for another antibiotic and sent me home. This doctor also told me that my Pulmonologist would be calling me later Tuesday afternoon. We live about 3 miles from the hospital and when we arrived home there was a message on the answering machine from my Pulmonologist asking how I was and asking us to call back. When we did the Pulmonologist had already left the office, so P went to get the new prescription filled.

As P was pulling back in the driveway the phone rang and it was my pulmonologist who told P she really wanted me admitted to the hospital. However, the hospital where we had gone did not have any available rooms, which was the reason they sent me home. P and I discussed this and decided that if my doctor could admit me to another hospital that would be fine with us.

By 7:30 Tuesday night I was in a CCU bed in the other hospital. I spent 3 days in the hospital on IV and oral antibiotics. I was discharged late Friday afternoon. . Friday when my doctor was discharging me from the hospital, he told me that we had caught this infection early, and stopped it before it had time gain much strength. Today I feel much better but still get tired easily.

Thinking back on this entire experience, I think the best part was the picnic our Mini Church had at our house when we were not there.

Picnics and the ER

2008-06-02T07:20:00.000-07:00

As I have mentioned before, we attend a large church. The average attendance on a weekend is 4000 people. Such a large number of people makes it difficult to meet others so people tend to get lost in the crowd. The church feels that one of the answers to this “getting lost” problem is having Mini Churches were a group of 10 – 12 people meet in a home for a time of Christian fellowship.

We have a Mini Church that meets in our home a couple times a month. I like the idea of once a year not having a lesson or discussion. Yesterday June 1st we were having our annual picnic. Because of all the fun medical equipment I require we always have the picnic at our house. Everyone brings one or two of their favorite or best dishes providing enough food to feed a small army. It’s great fun, and I just love it, you get to talk to others about things that do not come up in the normal Mini Church setting because the group dynamics are different.

P decided to not use the grill, instead we would to a Deep Fried Turkey. We’ve fried a turkey before and thought it would be a nice thing to share with the group. Early last week the turkey was purchased and placed in our refrigerator.

Last week Friday I noticed I had the beginnings of a sore throat. Because it didn’t bother me, I didn’t think a lot about it. By Saturday evening I was experiencing a lot of pain whenever I had to swallow anything. By bedtime I decided to take my temperature which turned out to be 99.9 F. I am usually 97.7 so I now had a 2-degree increase in my temperature. Sunday morning when I woke up, my temperature had climbed to 100.9 and by late morning reached 101.9. When P came home from church I told her I needed to go see a doctor. The problem was that in a couple of hours we would have a lot of people showing up at our door. We decided to leave the door unlocked with a note telling people to just come in. P called our youngest son K and asked if he would come by to set up the turkey fryer and she called one of the other guys telling him what was up. After these few phone calls we went to the Emergency Room.

Of course you go through the normal battery of things once in the ER, chest x-ray, blood draws, urine samples, throat cultures. However, all these things take time, lots of time. The doctor finally came and told us that I had a mild urinary tract infection that the chest x-ray was clear, and the throat culture came back negative for Strep Throat. I don’t believe him on the Strep Throat because he also said that my throat was red, inflamed and had white spots on it. To me that sounds like Strep Throat, but what do I know.

We finally left the ER arriving home an hour and a half after the picnic started. It was in full swing. Everyone had helped out; they told P that they had a lot of fun hunting through her kitchen cupboard looking for different items. Son K had showed the guys how to fry the turkey and then he had to rush off to pick up a friend at the train station.

The turkey was great, as I said earlier, there was more than enough food. My only regret is that in all the busyness I forgot to grab my camera and take some photos.

Questions Answered

2008-04-29T07:20:00.000-07:00

In yesterday’s Blog about the Deep Fried Turkey, I mentioned that I was a little disappointed with the amount of salt and the streaks or layers of marinade. Having looked on the Internet and not finding many answers or suggestions, I decided to write to the author of White Trash BBQ. I’ve been reading his Blog for some time now and hoped that he would be able to shed some light on my problems with the turkey. I would like to take this opportunity to thank him for answering my questions. Below is my letter and then Rob’s answers.

Rob mentioned that I need to be careful not to purchase and "enhanced" turkey, one that has already been injected with salt and other ingredients. I am not certain if the turkey we used was "enhanced". If it was that certainly may have been part of the issue.

My Letter:

If I may, I would like to ask you a couple of questions about marinating a turkey.

This past weekend my sons came and we used Emeril’s Fried Turkey Marinade on the first turkey I've ever deep-fried. Even with cutting the recipe in half because we only did one 12 pound turkey, we all thought the turkey was too salty. When we carved the turkey, we noticed that wherever we injected the marinade there was a layer or streak of the marinade.

Why do so many marinade recipes use so much salt? Could I reduce the amount of salt or replace it with some other spice? Would it work to marinate the turkey overnight in liquid marinade instead of using an injector? Or would that introduce too much liquid into the bird making it dangerous to deep fry?

I have many more questions, however these are the ones I am most interesting in having answered.

Thanking you in advance,
UP

Rob’s Answer:

Hey UP,

I'm no expert on fried turkeys. I've done a few, but I much prefer smoked birds.

I read over the Emeril recipe and I'd say that it calls for way too much salt. A cup of salt is more suited to a gallon of liquid, not the 12oz that recipe called for. A least to me. I probably don't use as much salt as I should.

In brining, and I guess in marinating, the bird swaps out the water in the meat with the liquids in the brine/marinate. What the salt brings to the party, besides flavor, is a vehicle to get the bird to release it's water. The liquid in the brine has a salt level that is higher than that of the bird. The liquids released by the bird trys to equalize the salt levels between the two, so salt and the flavors of the brine/marinade enter the meat flavoring and tenderizing it. I hope that makes sense.

On turkeys, you have to be careful that you don't add salt to an already "enhanced" bird. Butterball, Norbest etc, all sell primarily a bird that has already been injected with salt and various fats. You should seek out natural birds that have not been enhanced whenever you plan to use a marinade or brine.

As for the streaks you saw, that's just inexperience with the injecting needle. You must constantly move it around the meat while releasing the marinate. It takes practice.

As for marinating and not injecting - marinating doesn't penetrate the meat as deeply as marinating. You could brine your bird, which I like to do. Here's a pretty good brine...

Apple Brine for Turkey:

2 quarts apple juice
1 pound brown sugar (light or dark)
1 cup Diamond Crystal Kosher Salt
3 quarts cold water
3 oranges, quartered
4 ounces fresh ginger, unpeeled and thinly sliced
15 whole cloves
6 bay leaves
6 large garlic cloves, peeled and crushed
Substitute 3/4 cup Morton Kosher Salt or 1/2 cup table salt for Diamond Crystal.

Combine apple juice, brown sugar, and salt in a large saucepan. Bring to a boil over high heat, stirring to dissolve. Boil for one minute, remove from heat, let mixture come to room temperature, then refrigerate to 40°F.

In a large non-reactive container, combine the apple juice mixture with the remaining ingredients. When adding the oranges, squeeze each piece to release the juice into the container, and then drop in the peel.

Before cooking, remove the bird from the brine, wash it thoroughly and dry before using.

I hope this helps,

Robert

Deep Fried Turkey

2008-04-28T09:02:00.000-07:00

My eldest son C and grandson L came to visit this past weekend. They were giving my daughter in-law a “Mom’s weekend.” They arrived just in time for supper Friday night. After supper, my youngest son K, who works at a dairy, came with the milk products we would need for the weekend.

I ended up in bed watching a baseball game while K assembled the Turkey Fryer and C made the marinade and injected the turkey with it. By this time P had come home from work, so grandma and grandson L made the custard base for ice cream.

For breakfast Saturday morning son C made Buttermilk Whole-Wheat Waffles. Mid morning son C, grandson L, and I headed to the new Cabela’s sporting goods store where we met sons J and K. I spent a wonderful couple of hours browsing. I did find the peanut oil for the Turkey Fryer for a lot less than any other store.

Once home we had lunch and then I ended up in bed to take a nap. I am not certain what everyone else did, but when I woke up the Turkey Fryer was sitting in the back yard ready to start heating the oil.

However there was a problem. Overnight the weather changed from nice warm springtime temperature back to nasty, windy, cold temperature. The temperature was in the upper 40’s and a 14 to 20 mile-per-hour north wind, which had gusts of 30 mph. The boys tried to build a windbreak using 5-gallon buckets, but the wind was just too strong. After spending an hour the oil was only 175 degrees and it needed to be at 350 degrees. So we decided to stop and wait until Sunday.

Sunday morning it was still on the chilly side, but the wind had died down. Son K walked in the door at 10:30. He took the turkey out of the refrigerator so it wouldn’t be so cold when we placed it in the hot oil. Then he went out and set up the Turkey Fryer once again. Even though the wind had died down there still was enough of a breeze that he set up the bucket windbreak. One and half hours later we sat down to a turkey dinner. Because we had the hot oil we also made sweet potato French-fries. For dessert we had the wonderfully rich homemade ice cream with fudge sauce.

However, I was extremely disappointed with the marinade. For one thing there were streaks or layers of the marinade through out the turkey. Also it was WAY too salty. We think the next time we try this we would cut the salt in 1/2 or more. Also I think we will do an overnight marinade instead of injecting the turkey.

But it still good tasting considering everything. And I definitely will be doing this again.

Playing Basketball

2008-04-25T13:36:00.001-07:00

Playing Basketball.

The other day I watched the movie Hoosiers. The Internet Movie Database says this about Hoosiers. “A movie based on the true story of a small-town Indiana team that made the state finals in 1954, this movie chronicles the attempts of a coach with a spotty past, and the town's basketball-loving drunk to lead their high school team to victory.”

I was in high school in the late 60’s, not the mid 50’s. However, I attended a small school. If memory serves me correctly there were 120 to 130 students in the entire school, kindergarten through Grade twelve. So anyone who showed up for practice and could pass the physical was on the team.

If you read my profile you will see that I’ve had both hips operated on when I was twelve years old. As a result, I walked with a Trendelenburg gait , I could not run fast, and wasn’t particularly coordinated. In early 1963 the doctors at the University of Iowa told me that I, in all likely hood would be in a wheelchair by the time I was 40. I remember asking the doctors how much I could do. Would I be able to play sports? The doctors looked at each other and one answered me saying I should not play sports, that I should not run, and absolutely no jumping. The other doctor asked the first to step out of the room for a minute. When they returned the second doctor said that in light of my health issues, he agreed with the first doctor, however he said they had discussed my situation and had decided to tell me to go and do whatever I wanted to do. They didn’t feel anything I did would change the prognosis that I would be wheelchair bound by age 40.

Two months later, we moved from central Iowa to a small town in western Kansas. That fall I entered High School and went out for the football team. I was a small tiny freshman. After the first week of being run over by the much larger upper classmen, I decided football wasn’t for me.

When the time came for basketball I showed up on the first day of practice. Now because of the size of the school I was on the team. Even if I didn’t play in any of the games I didn't care, they still needed enough boys for practice skirmishes. For two years I was on the basketball team. I rode to the games in the team bus; I suited up for every game sitting at the far end of the bench. Sometime, I would actually get to play for a couple of minutes. These would be the games where we were so far ahead with so little time left on the clock, that there was no chance of us losing. On those occasions I would be on the floor and the gym would suddenly grow to an immense size. I can still see myself standing on the court, a small tiny freshman player who was wishing with all his heart that he were someplace else.

You ask if I made it to 40 without being in a wheelchair. The answer is yes and no. If I went to a museum or a zoo, I would use a wheelchair because of all the walking, but I wasn’t confined to the wheelchair full time until I was in my early 50’s.

I learned a lot during those high school years. I learned to set goals and work to achieve them. I learned not to let obstacles keep you from reaching your goals. I learned to find ways, sometimes different than other people, around those obstacles. I could go on and on but I think you get my point.

As I read over this post, I think I am beginning to wander a bit. But I wanted to write this so my children would know that I did more that ride buffalo through snowdrifts to school. For some reason watching the movie Hoosiers made me think of those high school days.

Ham Soup

2008-04-12T05:38:00.000-07:00

Earlier this week J, the lady who cleans the house, was here and brought me a ham bone. Friday is P’s day to work late so I asked her to make pea soup with the ham bone. When P took the ham bone out of the refrigerator, she discovered some sliced ham in addition to the ham bone. We decided not to use the ham slices in the soup, instead they will be used in an omelet for tonight’s supper.

The ham bone went into the soup pot along with the peas, carrots, onions, garlic, bay leaves, pepper, salt, chicken broth, and water and left to simmer it’s way to pea soup. After lunch P went to work, and I was left home alone with the delicious smell of soup. Later yesterday afternoon I removed the ham bone from the soup pot and fished out the chunks of ham that had fallen off the bone. Imagine my surprise when I discovered that the ham bone and all the ham chunks barely fit on a dinner plate. When I finished removing all the ham from the bone, I used two forks to shred the ham and finished up with a heaping plate of deliciously tasting ham. After I added all the ham back to the pea soup I discovered that I now had ham soup with a bit of pea soup flavoring.

Today P has some grocery shopping to do and is going to purchase another bag of dried split peas. We will cook these peas and combine with the other pot turning the ham soup back into pea soup. Which we will ladle into containers, place in the freezer and use it for lunches.

I will now admit that I made the mistake of adding salt to the soup before cooking it forgetting that you should never do that and forgetting that ham can be extremely salty. Hopefully adding the additional bag of cooked peas will cut the saltiness of the soup. If that doesn’t cut the saltiness enough, I will add a potato, which should do the trick.

I made it

2008-04-07T06:47:00.000-07:00

I finally made it out of the house. I was beginning to think the sneeze and squeeze season would never come to an end this year. You may ask what I mean by "The Sneeze and Squeeze Season". I call the time between the beginning of November and the end of the flu season the sneeze and squeeze season. It is the time of the year when people sneeze and with their hands full of germs want to shake my hand. I am always careful not to expose myself to colds and flu. I have learned that if I catch a cold or get sick I end up in the intensive care unit at our local hospital and it takes months for me to fully recover.

However this past Saturday the sun was out, the temperature was in the 60s’, so I went for a walk around the neighborhood. As daughter K and I walked down the sidewalk, I saw one neighbor cleaned her flowerbed. So I stopped to talk and found out that she now has two Chihuahuas. She had the one for two years now and just a couple months ago got the younger one. About ½ a block further, we stopped to talk to a lady who was washing her car. Across the street there was a family working on their front yard, while their young daughters were running around playing with their two beagles. It always amazes me what you learn on these walks. At the end of the one street, there was a mail box that had been damaged. I wonder if it was hit by one of the large snowplows during this past winter.

After about one hour, I made it back home to find two of my sons in front of the house. The older son was washing his car, and said he planned on washing our van and cleaning out the garage. The boys had already taken their mother’s planters and placed them back on the front stoop. And the youngest son had taken a garbage can to the back yard and cleaned up some the dead leaves and other stuff the winter winds had left behind.

Yesterday, I made it to church where I saw lots and lots of friends giving me an excuse to talk too much. It certainly felt good to get back to church after months being away because of the sneeze and squeeze season. Then yesterday afternoon we had our Mini Church (small group or Bible study group) at the house. However, by the time they all left, I barely talk and was exhausted. By 5:30, P had helped be into my pajamas and into bed. I am still tired, so I think I will spend the day resting and watching the White Sox play their home opener on TV this afternoon.

However, ss I write this, the sun is streaming through the window and it is 52 degrees outside. I am really tempted to fill the oxygen tank and head out the door for another walk around the neighborhood. However, I have learned that if I overdo it one day it takes about three days to recover.

So I think I will stick to my original plan of staying indoors watching baseball.

Biking

2008-03-26T08:58:00.000-07:00

While watching television last night I watched a show about biking. Watching it made me think back to my biking days.

One Christmas, as young boys living in North Carolina my parents bought my older brother and me bicycles. Mine was a 24-inch model and my older brother’s was a 26-inch model. There is only 14 months between my brother and I, so we were always doing things together. After learned how to ride the bikes, my brother and I were off to the races. Around and around the church we would race, riding as hard and as fast as we could in the graveled church parking lot. There was a paved road running in front of our house and a gravel road on the other side of the church. Because of safety reasons our parents would not allow us to ride on the paved road. I would ride bicycles for the next 40 years.

I never got into bicycling as much as my younger brother. He trains on a regularly basis and often rides in RAGBRAI and other bicycle rides. This year my brother is planning a Renwing Spirits Bicycle Tour across America as a fund raiser to help combat mental illness. However, I have taken my children on more bicycle rides than I can count. The three boys and I have ridden many miles together. My daughter and I may not have ridden as many miles together as I have with the boy, however we spent more time talking to each other.

These bicycle rides started when they were in grade school and continued until they were in high school ending when they decided they no longer wanted to ride with their father. On Sunday afternoons our entire family would go to the forest preserve to ride our bicycles. Often my wife and the three boys, leaving our young daughter and myself behind, would ride off heading to the end of the bike trail. Daughter K, either on her tricycle or bicycle with training wheels, would be left to ourselves. There I would be barely able to stay balanced on my bicycle while K would slowly, oh so slowly, pedal along all the while talking telling me all about her week. Many people would walk past us, turn and smile at the two of us talking more than biking. K and I would go about a half-mile before turning around and heading back to the start of the trail. Many times her mother and three older brothers would pass us before we made it back to the start of the trail. However, it is amazing what a person can learn if you just listen.

Other Sundays I would go for a bicycle ride with one or more of the boys. If the forest preserve trails were empty we would practice drafting with front wheel of your bike inches from the rear wheel of the bike in front of you. Were we good at this? I doubt it. Were we the fanciest dressed, were our bicycles the fanciest, or the newest? Absolutely not, however, we always had a great time. We often rode to the end of the trail where we would fill our empty water bottles, rest, and talk before heading back home.

One Sunday afternoon I was riding with our second son when the forest preserve police stopped us. He said we were speeding by doing 19 miles per hour on a road with a 15-mile per hour speed limit. After telling us that, he said he really wanted to tell us he had been following us for a while and thought it was good that a father and a teenage son could have such a good time together.

One summer we met my younger brother and the two older boys, my brother and myself rode the Iowa roads about 20 miles of Iowa roads to my brother’s home. Because we live in a flat area and the part of Iowa where my brother lives is hilly, the boys and I struggled to keep up with their uncle. The boys still talk about that ride.

I loved riding a bicycle. When I was 12 I had operations on both hips and was not able to take up walking or jogging. So I would ride my bicycle. I often came home from work and would go for a quick bike ride either before dinner or after. One summer our oldest son worked at a tire repair garage. He didn’t have a car so would ride his bike to work and back. So I often would ride the 4 or 5 miles to the garage and wait to ride home with him.

Watching that television show the other night brought back these memories. The memory of the burning leg muscles, the dripping chin, the gasping for breath. The memories of being caught miles from home in a sudden unexpected early spring or late autumn cold rain shower. Or riding with the wind and like the wind only to get to a point in the ride when I would remember that I now had to fight the wind on the return ride home. One bike ride I took with our third son started out great. However, before we reached the end of the bike trail, the wind turned and came at us from the north. By the time we made it home we were so cold we both had trouble getting our fingers to unzip our jacket zippers.

Enough all ready. You are all probable saying enough. I need to stop rambling because this is supposed to be a Blog entry, not the beginnings of a book.

Full House

2008-03-17T11:15:00.000-07:00

Our oldest son, daughter in-law, and grandson arrived Friday afternoon and are spending a couple of days with us before going to our daughter in-law’s parents. On Saturday our second son came for the weekend. Our third son lives in this area so he is always stopping be to pass the time of day. And our daughter was home last week on spring break from college.

I asked the boys if they would make Fried Chicken using a buttermilk double dipped Fried Chicken recipe from the Food Network. To help with the process, I purchased a 5-quart Lodge Cast Iron Dutch Oven and a couple of splatter screens. After talking to the two oldest boys about the timing issues with frying the chicken, C decided to bring his deep cast iron frying pan with when they came for the weekend. I asked P to buy some chicken legs and thighs and youngest son K, who works at a dairy bottling plant, to bring the buttermilk.

Sunday afternoon daughter K made dark chocolate brownies. She improved them by adding two symphony candy bars to the brownies before baking. After baking the brownies, K baked a pecan pie.

Once the desserts were made and set aside, the real business began. As the boys heated the two cast iron pans of oil and prepared the chicken, daughter in-law K and grandson L made the buttermilk biscuits and mashed potatoes. I sat by the kitchen table soaking up the atmosphere and supervising.

At the end of the day, everyone was full. The chicken was tender and juicy, the mashed potatoes were oh so creamy, the buttermilk biscuits were light and fluffy, and the coleslaw, made earlier in the day, was cool and creamy. Amazingly everyone saved room for either a piece of pecan pie or a piece of rich dark chocolate brownie.

Last night I couldn’t help but remember times when all 7 of us siblings, with our spouses and children, would descend on my parents. However, those stories are for another time.

Having to stay in bed

2008-03-05T08:00:00.000-08:00

Last month I posted about how my disease has progressed to the point where I no longer can use the Humid-Vent and will need constant humidified air. The doctor wrote the script, which we forwarded it to the medical Supply Company. After a couple of days the respiratory therapist came to the house to determine what would need to be ordered so I could have a constant supply of humidified air.

Last week Friday morning I saw my pulmonologist. I left the house at 8:30 and arrived back at 12 noon. I was exhausted and my lungs felt dry because I no longer am able to use the Humid-Vent, so I spent the rest of the day in bed with my ventilator connected to the external humidifier which sits on the table by the side of my bed.

Saturday we met our good friends at a local restaurant and spent a wonderful evening of friendship, good food, and visiting. Sunday afternoon we had our Mini-Church group here. By Monday morning, I was exhausted and spent the day in bed so I could be connected to the external humidifier and not have to exhale through the Humid-Vent. I was amazed at how much more energy I have when I do not have to exhale against the resistance of the Humid-Vent. I now have faced the fact that until my ventilator is modified to provide constant humidification, I will have to spend my days in bed and use the external humidifier.

Yesterday morning the therapist called and said the items ordered to modify my ventilator for constant humidification had arrived. However it didn’t appear to be everything needed to modify my ventilator for constant humidification. Yesterday afternoon the therapist came with the box of items and confirmed the fact that there wasn’t enough to modify my ventilator. After a number of phone calls it became clear that I will need a different ventilator. The new ventilator will be the same basic vent, however it will contain the additional circuitry needed to support constant humidification. Unfortunately, the therapist was unable to tell my how long is will be until the new ventilators will arrive. It appears that while the Medical Supply Company has thousands of my ventilators, it has only a few of my model ventilators that support constant humidification.

So it appears I will be spending a lot of time in bed. One nice thing about all of this is I get to look out a different window. When sitting in the recliner in the den I see my neighbor’s bird feeders and a field. I watch the Goldfinch, Juncos and other small birds on the feeders. I also get to watch the hawks and falcons waiting in the trees watching for some prey to swoop down on. In bed I look out on the street and watch the coming and goings of the neighborhood. A change in scenery is nice, keeping one from getting bored.

Snow

2008-02-26T08:55:00.000-08:00

As I sit in the den looking out the window at the 4 inches of fresh snow that arrived during the night I started thinking about snow. Then I thought about my sisters phone call yesterday telling me her kids were being sent home from school. They were sent home after only being in school for a couple of hours, because of snow. Here are a few of my memories of snow and High School.

When I was in High School, our family lived in western Kansas. Every morning the bus driver Ed would stop the school bus on the road in front of the house and blow the horn. However, on those mornings when it would be snowing, he would pull the bus into the church parking lot and put chains on the tires. After the chains were on all seven of us, my 4 sisters and 2 brother and myself, would pile aboard the bus to begin the slow, bumpy, torturous bus ride to pick up the rest of the kids and then head off down the final stretch of oil road to town. Often by late winter those old Kansas dirt roads seem to be mostly made up of ruts and the school bus would slew and slide around in those ruts, throwing us around in our seats.

Occasionally the bus would become stuck or it would slide off the road into the ditch. One time we almost slid off a small bridge and Ed sent my older brother walking back up the road to ask for the help of a tractor to pull us back onto the road. Another time during my senior year, the bus got stuck and it took Ed and myself a good hour of shoveling snow to get unstuck. Ed would shovel for a while then get back into the bus to warm up and than I would shovel for a while until I got cold.

My older brother reminded me of the time a snowstorm was forecast, and the school principle did not believe the weather forecast so they sent the buses out? Dad was a bit upset but we went anyway. Running 1½ hour late, we made it all the way around the route and had just picked up the last family when the office called Ed on the radio and told him to turn around and drop us all back off. It stormed so much we did not have school for another 3 days.

I could write volumes about my memories of snow. However, before boring everyone I will save those memories for some other time.

Life brings change but maybe not the answers you want.

2008-02-22T08:02:00.000-08:00

After a month of going to the “Ologist”, Urologist, Neurologist, Pulmonologist, and an Infectious Disease doctor. And after having all the blood tests, various cultures, and x-rays the verdict is in.

I do not have any underlying infection, so the conclusion is that the Spinal Cerebellar Degeneration has progressed. I am not surprised at this diagnosis because I had already come to the conclusion that I had lost ground. However, my doctors had to rule out anything else that might be causing the same symptoms. I have less energy than before, I am having trouble standing and transferring from the recliner to the wheel chair. Transferring isn’t an issue in the morning, but by evening I find myself standing holding onto my walker talking to my right leg telling it to slid so I can continue to my wheelchair. I always make it but sometimes it takes longer than I like.

Also because of my weaken state, I am having trouble exhaling. Up until now I have used a Humid-Vent in my vent circuit to trap moisture on the exhalation cycle and to add the trapped moisture back on the inhalation cycle. By early afternoon I am so exhausted from the effort of exhaling against the Humid-Vent I have to remove it from the ventilator circuit. Once the Humid-Vent is removed, my lungs get dry and I am forced to spend my afternoons in bed so I can connect the vent circuit to the external humidity reservoir. Fortunately this is only a short-term condition. The Home Health Company is working on installing a humidity reservoir on my vent. Of course this all takes time. They first need orders from my doctor, and then they will have to order the additional equipment from the ventilator manufacture. So this all takes time.

Because of the progression of the disease I now have trouble talking. My voice is much weaker so I find myself using the Internet to Email and Instant Messaging more. While using Email and Instant Messaging are a convenient way to communicate, they aren’t the same as talking. However, Email and Instant Messaging allow me to get outside of my little recliner world.

Still there is one bothering issue in all of this. As a Christian I often request prayers for help being patient for myself and dealing with the disease, and for dealing with others when I don’t feel well. I also often request prayers for relieve from pain, from exhaustion, from boredom, and from worrying about an uncertain future. And sometimes people ask me what hidden sin do I have in my life that is not allowing God to perform a miracle of healing. I am given the impression that I am at fault for not allowing God’s miracle of healing to happen. I don’t believe I have ever raised this issue in my Blog before. However, yesterday while driving me home from the doctor a friend talked about this very issue. After talking to my friend about this issue I decided to address it in my Blog.

I feel this mentality stems partly from people not being able to deal with the uncertainties of life. I do believe God can and does do miracles. I do not believe that after 46 years of health issues God is going to miraculously heal me. I do believe God answers prayers and gives me relief from pain, exhaustion, and worry about the future.

I have not posted a lot this month, because I did not wanting this Blog to become a long list of disappointing and depressing news. However, because this Blog is about my live dealing with the Spinal Cerebellar Degeneration.

Looking for the gardening catalogs

2008-01-23T06:35:00.000-08:00

Yesterday's Britt-Arnhild's Blue Garden was about going to the garden centers, reading the seed catalogs, and starting to think about and designing this years garden.

Reading her Blog made me think about my father whose birthday would have been today. My father was a Pastor who always served in small country churches and who also had a rather large family to raise. Once the New Year arrived, dad would always look forward to the arrival of the seed catalogs. I think he viewed this, as a race to see which of his favorite seed companies would get their catalog to him first. I can remember as a young boy entering his study and seeing the stack of seed catalogs on his desk.

Soon the packages would begin arriving in the mail and dad would begin his yearly hobby of turning the basement and most of the southern facing windows into a greenhouse. As I mentioned, my parents weren't rich and had a large family to support, so Dad never had any of the fancy greenhouse products one saw in these catalogs. Rather, his was a collection of odds and ends. He built his own hotboxes and had a rather eclectic assortment of heaters and lights. Dad would ask us to bring the small, empty milk containers home from school so he could use them to start his seeds.

Soon there would be new plants starting all around the house. Later he would move all the seedlings outside during the day to begin the hardening process. Finally Dad would have all his flowers and vegetables out of the house and the yard and the rather large garden would no longer have that dead, barren look.

And every time Dad would move to a new church, he would carefully pack up his collection of plant starting items and his stack of old seed catalogs. Once at the new church, one of his first items of business would be find a place for his garden and the unpacking of his eclectic assortment of basement greenhouse items.