Went to my first endocrinologist appointment the day before Thanksgiving. He is a cold, Russian local doctor in Rego Park, but he seems to know what he's doing. My thyroid sonogram revealed a small nodule and I needed to see an endocrinologist. I saw online that Weill-Cornell has a wonderful endocrinology department so I emailed my neurologist, Dr. Shtilbans and asked him if I should get myself in there. He said it wasn't worth traveling over the river; he suggested I see the local doctor and if it turned out to be something complicated, then we could see. And there was a side benefit: my aide and I walked [well I rolled], and I got to be out in the neighborhood and pick up a bottle of wine to bring to Thanksgiving. I don't get to roll around the neighborhood too much, because the aides who work during the day don't like to take me out for some reason. They will do what errands I need, but they prefer to do them alone. So, visits to local doctors are great excuses to get me out locally and I can see what's doing in the 'hood, aside from my lunches with Judy and Louise. So, getting back to my thyroid, the doctor feels a slight goiter, which he is trying to shrink with medication [25mcg of Levothyroxine]. It's kind of a pain in the butt how I have to take it -- first thing in the morning with water and then I have to wait 30 minutes before I eat breakfast. This is a pain with my aides' schedules, because the night aide gets me up at 6:00 am and can't give me breakfast until she has to leave and then the day aide has to clean the breakfast dish. But oh well -- change is good. Later on in December, I have an appointment with a local nephrologist [kidney specialist] because there could be a connection between low potassium and kidney failure -- either low potassium can mean kidney failure or low potassium can be because of kidney failure....ugh, I don't want to make myself crazy. Dialysis is something I don't want in my future.
Thanksgiving was nice. I went to my sister's house and my aide agreed to come along. The food was great and the company was fun. There was one glitch, however, that caused me a lot of anguish later and I didn't see it coming. I have had a manual transfer wheelchair on loan from the ALS Association for about 6 years and both footrests are broken at the point where they attach onto the chair. So I went to Thanksgiving with no footrests. This meant that my feet were hanging down for about eight hours, and when I reached home, my legs were weak. I also didn't sleep all night because my feet were hurting all night and they were freezing cold. And, as usual, when I have to sit in the manual transfer chair for so many hours, my whole body hurts from not having a headrest and the wheelchair being so uncomfortable. It is only for short transfers and not for sitting for long hours. But, since my sister's home is not the least bit accessible and I have to ride in my brother-in-law's car to get there, my custom-fitted motorized wheelchair is not an option.
And now there is the question of the loaner manual chair's repair. The loan agreement from ALSA states that I have to keep it in good working order and return the equipment when I am done in good condition. That means I am responsible for the repair. There is a place nearby called Gem Surgical Supplies but I have to see about pick up and delivery. Otherwise, I have to wait until Louise rents her zipcar at the end of the month to drop it off, and then wait until she takes a zipcar again several weeks later to pick it up. In the meantime, I pray that my motorized wheelchair doesn't break down, because then I would have no backup manual wheelchair. As a matter of fact, I have been looking at manual transfer chairs for me to purchase and I can get a simple one for about $600, or a much better one with a headrest, and that tilts back, for about $1400. Then I think: hmmm, I go to the family maybe once [at most twice] a year-- in fact, for 2011, I didn't go at all. We need the manual chair when I do the Long Island Walk for ALS [which I didn't even do this year due to lack of team interest] and for New Years Eve when I go to Nancy's house in Great Neck [provided Louise can go and I have an aide who cooperates with transfers], so is this a smart investment?
I'll tell you what a smart investment is: new shoes. At my sister's house, everyone was teasing me about my "Frankenstein shoes", but Medicare now only pays for custom shoes for diabetics [which I don't have -- yet] and they will cost $800-1000 out-of-pocket. I still have to calculate my NYSARC trust account to see if I can submit the bill, and hope the NYSARC trustees approve the expense. Anyway, not only are my Frankenstein shoes falling apart, but they were made for the old braces and don't really fit these new braces. I had to stop myself from saying to everyone at Thanksgiving "Would you people like to donate to my shoe fund?" Ironically, I think it's items like my funky shoes that embarrass people from being seen with me.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Tuesday, December 4, 2012
Monday, December 3, 2012
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