Friday, May 25, 2007

Heading West

Tomorrow morning P will pack the van. We are going to spend a week in a town in central Iowa where my two brothers and one sister live. When I say pack the van I mean pack. P says that she must pack more for me then she did when the children were infants. And I believe her. She already has half of the dinning room table covered with items for my care. We must take bottles of sterile water and peroxide, drain sponges, tracheostomy collars, tracheostomy-cleaning kits, and battery chargers for the wheelchair and the external ventilator battery. In addition to that we must take the backup ventilator, spare ventilator circuits, and an extra Foley bag. The list goes on but I can't remember everything. P and I have been talking and making a list of needed items for a week now.

My sister, where P and I will stay, told us the oxygen tank had been delivered earlier this week. However, it isn't large enough to hold enough oxygen for out entire stay. So this morning while at work P has called the Medical Supply Company in order to have an oxygen concentrator delivered early next week. At least that has been taken care of. This is always one of my big worries when going someplace. Will there be enough oxygen at the place I am staying. In the past we have arrived before the oxygen was delivered. Once I am off the oxygen I go down in a hurry.

So tomorrow after everything is loaded into the van, we will fill three portable oxygen tanks and go on vacation. After all of this we will head west. I am really looking forward to this visit. My brother is taking a day off work so he and I can spend the day together. Next weekend my three other sisters are coming for the weekend. Sounds to me like it will be a weekend of visiting, talking, laughing and relaxation.

Then on the return trip home we hope to stop and visit my aunt and some friends of ours who just moved to the same town my aunt lives in.

Thursday, May 24, 2007

My Little Boat and taking my dad fishing

I had kept my Dad informed about the progress of the repairs on my little fishing boat. So the first time they came to visit after the boat was finished I took Dad out to the garage to show him the little boat. As we stood there in the cool garage I started telling him about how we were enjoying the little boat. After telling him about how much fun it was to be in the boat fishing I asked Dad if he would like to go fishing.

That is why early the next morning we were at the bait shop buying fishing license, and bait. We left the bait shop and drove about one hour to a local river. As we turned off the paved road onto a gravel road Dad asked if I thought we would catch anything. It was late October and I didn’t know what to answer. Soon we arrived at the public launch site and put the boat into the water. I remember thinking that Dad and I must be crazy to be out fishing at this time of the year because boy was it cold.

However, we were there, the boat was ready so off the two of us went slowly up the river. We finally found a good-looking spot, so we tied up the boat and started fishing. Once I turned off the boat motor, it seemed so quiet. After a short wait we started to hear the water lapping at the side of the boat, the birds started singing again and we could here all the sounds of nature. For a while Dad and I sat quietly fishing. Soon however, Dad got the thermos and said it was coffee time. After that we just talked and fished and fished and talked. We stayed in one spot for an hour or so and then would move to a different spot on the river. I remember having cheese sandwiches and apples for lunch with more talking and less fishing.

Dad and I must have spent 6 hours on the water fishing. We never caught a thing. In fact we never had a nibble. Finally we returned to the public access and pulled the boat out of the water and back onto the trailer and went home.

What a day that was. I can still see the colorful fall foliage, and hear the sounds of the river. I don’t remember ever talking about that fish-less fishing trip with Dad after that. However, I wouldn’t have missed that trip for anything.

Wednesday, May 23, 2007


Yesterday I read a Blog about Contentment where the author quoted Philippians 4:12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I was going to leave her a comment about Contentment. However, as I started writing the comment I changed my mind and decided to write in my Blog about Contentment.

Contentment is sometimes difficult to maintain. I would say that yesterday I was content with the way my life was going. However, the other day I learned that last week, while in the van, my Foley bag was leaking. So now the van has an unpleasant odor. I was going to ask my Home Aid, who comes twice a week to help me with bathing, dressing, and light house work, to back the van out of the garage. I had thought I might be able to wash the van floor cleaning up the mess left by the Foley. But, wouldn't you know it today I am having trouble breathing. Every time I do anything I feel my heart rate going up and I get short of breath and panicky. So I guess the van will stay in the garage and I will sit in the den and try not to fret about it.

These are the times I struggle with the concept of Contentment. That is if Contentment can be called a concept. To be dependent on someone else to do thing for you, things that you used to be able to do yourself, makes it hard sometimes for me to be content.

I just spent the last hour searching the web looking for articles about contentment, content while handicapped, and accepting one's disability and was amazed at the number of articles. I did a quick sampling of the articles and didn't find one that talked about Contentment with being handicapped. Maybe I didn't use the correct words or phrases in my search. There were a lot of articles about being content in the sense of not being envious of others, or about accepting your status, or your position in this world. Most of these appeared to be sermons written by ministers with no physical handicap. I did find one article written by a person with cerebral palsy who was in a wheelchair. Basically she wrote that you just have to deal with you limitations and get on with living.

So did the articles written by ministers miss the point about Contentment? Were they talking about a different type of Contentment? What about the article written by a person with cerebral palsy who was in a wheelchair, who basically said deal with it and move on?

Now that I have reached the end of this Blog it has dawned on me that maybe I am not dealing with Contentment. Rather today I am dealing with frustration. I will say that writing this has been beneficial. I have gotten over my feeling of frustration and am once more feeling content with my lie.

Does this make any sense?

Oh and By The Way the van is still in the garage and the Home Aid has left. So the van waits for someone else to clean up yet another of my messes.

Tuesday, May 22, 2007

My little boat and taking the boys fishing

It was still dark outside when I slipped out of bed and made a thermos of coffee, filled a larger thermos with water, packed sandwiches, fruit and juice packs into the cooler. I also place the container of worms that I had dug out of the garden the evening before. I quietly opened the back door and took everything out to the car.

Next I went down to the boy's room and woke them both up. There was some complaining about the fact that it was still the middle of the night and they wanted to stay in bed and sleep some more. However, as we slowly pulled out of the drive onto the street they started to wake up. The longer we drove the more they talked. Sometimes I drove and just listened to the two boys talk. Sometimes they asked me questions or I asked them questions. As I write this I can’t think of what we talked about. However, I remember the feeling of the three of us connecting with each other.

It was still early when we arrived at the mist-covered lake. We pulled into the public access area and got out of the car. I had asked the boys to be quiet because the people in the cottages next to us were still sleeping. So the three of us quietly crept around loading the boat. The boys were so excited I thought their excitement would be enough to wake the neighbors. To this day I see the boys standing watching as I backed the boat into the water. The boys stood and held onto the rope holding the boat next to the shore as I parked the car, then we all got into the boat and used the oars to move away from shore before starting the motor.

We sat in the little boat eating breakfast as we watched the sun come up. Every so often one of the three fishing poles would have a fish. Sometimes the fish would not be of the legal keeping size so we would but them back. As the day progressed the wire fish bag hanging over the side became heavy with fish. At lunchtime we pulled back up to the dock. After tying up the boat and we sat in the car talking about the big fish that got away. After eating lunch the boys ran around collecting stones, branches, pinecones and all type of other items boys collect.

About mid afternoon we packed up and left the lake. On the way home we stopped at our favorite Ice Cream store and had Ice Cream. Shortly after leaving the Ice Cream store, I found myself driving in a silent car. The boys had fallen asleep and stayed asleep most of the way home. However, when we arrived home, they bounded out of the car each talking over the other trying to tell their mother where they had been and what they had done that day.

I cleaned up the car, boat and fishing equipment listening to the boys and their mother talking about the long day. To this day, I am ever so glad that I bought that little boat and fixed it up.

Sunday, May 20, 2007

My Little Boat

I have always enjoyed fishing and always wanted a boat. Finally one fall about 22 or 23 years ago I bought a small used 12-ft aluminum boat and boat trailer. Both the boat and trailer were in terrible condition. When I brought the boat home, I parked it in my garage planning to work on it as time allowed. I started by making a long list of items that needed to be replaced hoping to shop for the best deals I could find for the different parts. As I was going over the boat, imagine my surprise when I discovered that the boat was 40 years old.

Once my Father in-law heard about the boat and trailer he came over to see what I had gotten myself into. He entered my garage, and walked around the boat tut tutting and muttering to himself the entire time that he examined the boat. He said that I should place my boat in his garage because it had a heater. Dad said that since he was retired he had the time to take my long list of parts and get the best deal for each item. So when I had a free Saturday Dad and I would work on pounding out the dents, tightening the rivets, replacing all the wooden seats and doing everything else that needed doing.

Dad and I worked on that boat through the fall, winter and spring. Finally my boat was ready to be placed in the water. So on the last Saturday of that long ago May a friend and I took the boat to a local river and backed the trailer and boat down into the water. At the time I did not have a motor so we used the oars and rowed the boat around for about an hour. What relief I felt to find no leaks.

A couple weeks later, dad found a used boat motor that I could afford and so the little boat and I were ready for big adventures.

Friday, May 18, 2007


Well this morning I haven't had any breakfast. I need to have a 12-hour fasting blood work done. So we plan on leaving for the doctor a little early so I can have the blood work done before we see my Pulmonologist. The blood work is for another of my doctors. I see him in June. However, if I make a special trip to the clinic to have the blood work done, I have to pay a co-pay, but if I have it done when I have a scheduled doctors visit, I don't have to make a co-payment.

The financial part of this illness is staggering. Keeping track of all the bills and who pays what takes P. 4 - 8 hours a month. Earlier this week I was informed that my medical supplies would not be sent because their records showed that I owed them money. However, the bill they were talking about was billed wrong and their billing department told us not to pay it. So we had to make more phone calls just to get needed medical supplies. Last year this same company claimed we owed them hundreds of dollars. After numerous phone calls and letters, they said they would audit our account. After the audit we owed them less then ten dollars. Needless to say we never pay them until we are certain the insurance has paid and we are certain we owe the money and that the amount they claim we owe them is correct.

Enough of this it is time to leave.

Wednesday, May 16, 2007

Seven Things about me.

OK here goes. Seven things about myself.

1. My wonderful wife and I have been married 32 years and have 4 fantastic children, 3 boys and a girl. Also I have one lovely daughter in-law and one GREAT grandson. My wife and I are now at the stage of life where we enjoy travelling. However we don't travel.

2. I am handicapped with Spinal Cerebellar Degeneration, a disease that presents like ALS. However unlike ALS this disease progresses much slower. I have had it for at least 10 years. I am unable to work and must spend my days on a ventilator and in a wheelchair.

3. I spend my days doing Sudoku puzzles, watching baseball on TV, watching BBC mysteries, and talking to people using IM on my computer. I have a routine that keeps me busy most of the day. I feel it is important to keep as busy as my health allows. My busy might be your resting.

4. I like reading mysteries. Our county library has a Home Bound Library service. So I use the Internet to find books I might be interested in. I email my list to the library and they send me 3 or 4 books from my list. I also tell the library that "Pot Luck" is welcome. This way I get to read authors, I might not have noticed on my own.

5. In the spring and fall when the weather isn't too hot and/or humid, I like to go for walks around the neighborhood. Not a fast walk, rather slow walks. That way I can see and hear the birds and watch the hawks soar. I usually just putter around enjoying the sights.

6. When my Grandson was born, I wrote a series of short stories based on Harry and Tom the Black bears. After writing these stories, I stopped and haven't written any more for almost 2 years. Lately I have been thinking about writing again.

7. I like to think that I am an upbeat happy person. I would say that my motto is to be happy in whatever circumstance you find yourself in. So when life presents you with a trainload of apples, don't complain, make apple pie, apple crisp, apple cake, and applesauce. Then go meet your neighbors and bring apple pie, apple crisp, apple cake, and applesauce into their life.

Friday, May 11, 2007

A walk with Grandpippy

So Grandpippy filled his portable oxygen tank while L. was in the other room with Grandma. The noise is scary so it is safer to be with Grandma. However, once the oxygen tank is filled L. climbs onto the wheelchair's footrests and asked Grandpippy to go down the ramp in the garage. So began another one of our walks.

We rode together to the end of the street where there were large trucks, and big machines digging a basement for a new house. As we got closer, L. asked Grandpippy to stop so he could climb up and sit on Grandpippy's lap. Grandpippy's lap is much safer then standing on the footrest. Once L. was settled we slowly rode on the sidewalk past the large trucks. There the two of us were looking at the large trucks and the huge machine on the truck. When Grandpippy asked L. if he wanted to get down and go closer to the large truck, L. told Grandpippy that he wanted his Grandma. Grandpippy said we would ride to the other side of the street farther away from all the large trucks and huge machines.

So we slowly rode across the street and up onto the other sidewalk. After sitting there for a short while L. asked if we could go down the sidewalk. Riding along down the sidewalk gave L. an opportunity to tell Grandpippy all about the large trucks and ask Grandpippy what they were doing and if they could come on the sidewalk with us. After he was assured that "No they would stay parked", L. had Grandpippy stop and turn the wheelchair around so that he could check. After checking we continued on our trip.

There were lots of other things to talk about. L. asked about the pools we saw and some of the back yards. Grandpippy showed L. the yards he liked the best in the neighborhood. Of course then Grandpippy had to try and explain why he likes those yards and not the yards we were passing at that time.

A while later we saw a big red and white boat sitting in a driveway. Of course we both had to examine this boat. Grandpippy learned that it is much safer to examine a boat from the safety of Grandpippy's lap and not the sidewalk. However we spent a long time looking at the boat. First we looked at one side of the boat and then the opposite side. After asking Grandpippy more questions then he had the oxygen and energy to answer we continued our walk.

Soon we were going past the house with the pretty white dog. The dog was behind a fence so we couldn't see the dog. We could only hear the dog barking at us. This gave L. something to talk about the rest of the way home.

Of course there were other walks with Grandpippy. Walks in the back yard, walks in the store, and walks to get the mail. However, this was the longest walk L. and Grandpippy took during the week L. stayed with Grandma and Grandpippy

Thursday, May 10, 2007

Renewing Friendships

This past Tuesday, I had lunch with three people, two who I hadn't seen in 17 years. My one friend came to the house and drove us to local restaurant where we met the other two guys.

It was so much fun to sit and listen to them talk. They talked about their aches and pains, about how they didn't like getting old. About having to go to the doctor, about having to make middle of the night trips to another room of the house. After they had been talking about this for some time, they all suddenly stopped and looked at me in my wheelchair and burst out laughing.

We talked about our children. About trips we had taken. My close friend had just returned from Rome. One of the other friends talked about visiting his father's hometown in Italy. He has been there twice and is going again this summer. I mentioned the two trips my father and I took to visit cousins in the Netherlands. One friend said he and his wife would never be able to do that because they refuse to fly. Which answered the question about why he always drove to various company schools.

Of course we talked about the times we had working together. About the supervisors we had. The silly customers we put up with.

What fun it was.

Tuesday, May 08, 2007

Lunch with "The Boys"

It has been a long time since the last posting to my Blog. Last week my 2 1/2 year old Grandson stayed with us. What fun we had. We made faces in the bathroom mirror after brushing our teeth. We rode around the neighborhood. He would stand on the footrests of my wheelchair and talk and ask questions about everything we did and saw.

However, all the talking tired his Grandpippy out so much that most days Grandpippy was the first one to bed. In the morning, Grandpippy would wake up and put the head of his hospital bed up and watch the news. When L. would wake up he would climb into my bed and we would watch children's programming until I thought it was time for us to wake Grandma. So L. would get out of my bed, take the controls and lower the head of the bed, bring my walker over, transfer the Foley bag to the walker and tell me that all was ready for my to transfer to my wheelchair. Then he would ride with me into the kitchen where he helped make the coffee. While the coffee was brewing we would turn on the laptop and his Grandpippy make the bed.

This is a sample of how my days went last week when L. stayed with us. However, he went home this past Saturday. Sunday and Monday I rested because today I am going to lunch with "The Boys". These Boys are all 10 to 15 years older than I am. We all worked together about 10 - 15 years ago. Then for a number of years we drifted apart. During those years, I kept in contact with R., one of the boys I worked closely with for years. If fact last fall when he moved his rhubarb patch he came over and planted some rhubarb for me.

I am a little concerned about how this lunch will go because yesterday and today I started having trouble breathing. I think it is because of the weather, so last evening P. closed all the windows and turned the air conditioning on. Seems a shame to have the windows closed keeping the sounds of May out, but breathing is more important then hearing the birds.

Well what do you know? One of "The Boys" just called to ask if our lunch was still on. He told me that from now on he was not going to trust email. He would rather use the old fashion method of telephoning. Should I tell him that mail has been around longer then the telephone. The difference is in the delivery system. This is something to think about until lunch time.