The past couple of months have been difficult. We are no closer to easing the chronic pain as we are waiting on a psychological evaluation the insurance is mandating. There are some good days, but not the majority. He wakes in pain, gets some relief through the medications but it is never consistent. We have not been able to determine what factors make it better. Bad days there is no relief. It interferes with his moods, his therapy and his willingness to venture out.
Our cg situation has not improved either. We had no luck finding a third before the year’s end. D has cut back as his family needs require his time now more than ever. It will not change for the next few weeks. A has been taking up the extra hours and Ian has taken the afternoons. He gets him to his PT sessions and Dr. appointments. I do the rest. Every weekend I am on duty, every evening. His brother had a tough time at first. They got into several shouting matches. We finally established a set time for his brother to be away and made sure he had time on the weekends where he was not to be expected to help. He has learned how to do the ROM exercises but has not been brave enough to learn to transfer him. One thing at a time. Maybe early in 2015 we can take that step. The end of the year A brought news that he in now engaged and will be moving. Now we must get a new cg so the ad went up again on Dec 30th.
His therapy has been going very well. He can balance without support from his arms and keep his balance while his therapist pushes on him unexpectedly. He is learning to catch himself if he does fall over as well as helping to transfer into and out of his wheelchair. It is millimeters at a time, but he was not able to do anything several months ago. He can straighten his arms while using the ric shaw and he is able to move the stander legs a few inches back and forth with his arms hooked over the handles. He can roll from his back to his stomach and with the help of a strap go from sitting on the side of the mat, lying back and pulling his legs up. We work on these at home when we can. I wish I could get a PT student up here to help. His therapist says few physical therapy people work with high level spinal injuries. Something like 5%. So I am the home therapist.
The holidays are never a time for dieting. I had him on a strict diet, which he did not like. Small portions, no soda, sweets, burgers, etc. Lots of vegetables. It is unfortunate that brothers always seem to compete. Eating and drinking is no exception. Colin is never pleased when he looks at his brothers plate piled high with food, then his smaller plate with half the portions. He gets upset and complains, understandably. Nobody likes being on a diet. His brother drinks much more than Colin and Colin wants to enjoy the beers his brother brings home. Too many. Not that he is drunk every night, but the extra calories. He hates it when I mention it and uses the holidays as a reason. He is also very good at rewarding himself with an extra portion for the hard work in therapy. How can I say no? So his weight gain has slowed down and we managed to keep him from going up yet another size. Once the new year is here, the diet returns as will his grumpiness about it.
I had winter break for 3 weeks and the time away from work was needed. It gave me time to rethink and figure out how much time and stress I will allow a poor evaluation. It is a time of transition at work. I only have so many hours to do 2 jobs well. I can live with being a poor employee in the eyes of a single new upper management person. I will continue to do my job as long as others have the same issues and the same percentages, I can deal with it. So long as my immediate superior has my back anyway, which has not been the case so far. However, on some issues it would be in the best interest for our site for him to support me. Time will tell.
I did get one Saturday night off in December for my BD. Had sushi and went to see The Hobbit. It was great fun, as always. I would like to have more time off, but not this year. Maybe in 2015 the cg situation will improve.
54 years old and some days I really feel it. I have thought about leaving my job and caring for Colin full time, but we cannot afford the income or insurance loss. More and more we are covering his medical supplies. Insurance now only covers his catheters, no more bowels supplies. It is another example of how our medical system is set up for incompetence.
I got a call from the supplier telling me they needed some form from the insurance and, of course, I needed to call the insurance about it. Some form that tells the supplier the insurance does NOT cover these supplies (because proper hygiene during a bowel movement is not medically necessary). This form would allow MediCal to be billed. I called and the insurance had no idea what I was talking about. Someone was supposed to send me a pdf file of a form they sent in June that said they will not cover the supplies. I never got it. In the meantime we ran out of gloves and the disposable bed pads that we use for his bowel program. I ordered the supplies and we now have that responsibility. It amazed me that I had to be the in between. Why can’t they talk to each other? It’s the same waiting on a psychiatrist to call for an appointment. We were told there is a referral but we have to wait for them to call. It has now been over 2 fucking months. Hurry and wait, pay the invoice that has not details of what the service is for, pay extra because they fucked up, wait some more. There is a reason he only went to the hospital once in 2014. The system is perfect for the healthy.
Prescriptions are the usual cluster fuck. He changed a couple with the doctor but couldn’t get a refill because it was too soon. Too often he runs out of medications he needs to be weaned off. It does not help his pain situation. When his medications are off, his bowel movements are not productive and he gets bloated. Therapy helps. I wish I wasn’t so tired in the evenings so we could do more at home than just weekends. During my winter break we were able to do much more than before. Once we get a good cg set up we can train them do do some of the exercises, ric shaw and stander.
I did not get my health checks done. I need a mammogram, a colonoscopy, a dental check up and a regular check up. I had no time. I need to make time in 2015. I need to eat less, exercise more, drink way less and find more ways to decrease how stressful I allow things to be. The more stressed I am, the less I sleep, the more I drink. It is a very bad cycle. It is not more than a few glasses of wine, but I don’t need the extra calories or toxins at my age.
2014 was a tough year. Cg situation did not get resolved. My work is not a good place to be. Medical stuff is a part of every day. Colin’s discomfort is a part of every day. I want to do therapy with him regularly, but time and energy never cooperate. I need to take better care of myself, better care of our home. I want to spend some real time with my husband. In all of 2014, we had 1 weekend alone. We had to get a motel in town and it was totally worth it. I need to plan more than 1 in 2015.
New year’s we had some friends come. Colin had his friend over as well. We all had a nice evening of good food and wine, beer. Champaign at midnight. In bed by 2 am. Colin wide awake by 5. Jan 1… ugh.
Colin did make a lot of progress in therapy, he is stronger now. He talks about feeling better and retuning to school. He and his brother write poetry and share it. They even went looking for a poetry reading in Fresno. 2 dead ends. Fresno and poetry do not seem to be miscible. He enjoys hanging out with his brother although he hates that Ian gets to eat more. They get along well and Colin has been watching Ian play video games. We can always get adapters if he wants to join in.
Overall, I am not unhappy to have 2014 go. I learned a great deal of therapy, I learned what I need to let go of and what I need to make a priority. The less stress I allow, the better we all fare. Colin made progress, which is the most important thing. Tiny steps forward is why we work so hard.