Many of you have asked for an update on how I am doing. I've also heard “your blog is too one-sided, painting only the rosy side of your life” from close friends. Well, honestly, it is hard for me to be honest about that. I DESPISE complaining and whining! That said, the realities of daily life are changing and I have to be honest with you and WITH MYSELF.
The difference between “good days and bad days” is narrowing. Mostly, we just have days with various challenges depending on my strength and energy level. Energy level is one of those things that I used to be able to count on a nap or good nights sleep helping with. Unfortunately this is no longer the case. I often don't sleep well because of pain. My left arm is significantly weaker than my right and I was beginning to have “frozen shoulder” on the left due to the lack of use in certain positions. Amy has been doing passive range-of-motion on both shoulders for a while now and this seems to help some. My neck weakness causes pain, as well. Sleep does not come without melatonin or RX meds.
Last week we had to go to Indy because Christopher had a doctor's appointment. I was feeling pretty tired, sore and weak so we took a manual wheelchair (our van has no ramp for my powerchair). While this chair spared me from having to walk, it was not comfortable, nor did it support my body in the areas I need it to. Medical staff looked past me and immediately addressed Amy when talking about Christopher or asking questions. This wasn't intentional and when they were told who was “mom” they tried to address me, but it does hurt me to be overlooked. At least my powerchair allows me to sit up higher so people can't look past me -- even if they aren't sure who is “mom”.
Eating is a daily challenge. I'm never sure what I will be able to eat so we end up "winging it" at the end of the day. The one thing I know I can always eat are smoothies in the morning. Choking, even if only on my own saliva, is a daily event and it HURTS. Coughing for hours afterwards, I always wonder, “did the food make it past my vocal cords this time and, if so, will I get aspiration pneumonia?” So far, I've been blessed but I've seen enough of my fellow “PALS” (persons with ALS) end up in the hospital with pneumonia that I know it is a very real risk. Pneumonia is probably the leading cause of death in PALS. My choking episodes are a source of great anxiety, especially with Phillip and Christopher. I believe they are afraid I will die every time.
I need help cutting my food and help with fasteners. Showering and getting dressed take longer and exhaust me. My endurance and balance are major issues when I go out, and I can't just “up and go” anymore because I can't take my wheelchair. I think the ability to just “go out and do stuff” is what I miss the most. Thankfully it has been a beautiful summer and my house has been “enlarged” significantly by the front porch and back deck. I am really dreading winter, though. Bottom line: I'm progressing...slowly, but still progressing.
God is still good, even though sometimes life is hard. Hope you know that in your life, as well!
Love, Claudia
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