Mexican Fiesta

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

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

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.