Friday, October 18, 2019

One step back, two steps forward - a progress report

   Last month, I was in the hospital two times.  The first time, I ended up staying up for a week. I went in with a fever that kept returning, and, after two days, I was told there was an infection in a pressure sore on my butt (although my wound doctor said this was unlikely – “I don’t buy it,” he said – and, by the way, the sore is much better).
   The second time I went to the hospital, it was just a few days later, and my g-tube was leaking and was replaced.  It had been leaking while I was in the hospital the week before, and I was repeatedly told it was okay, that it was the way I was laying (pretty much the way I always lay). Could it be that it was actually my g-tube site that was infected?  Mmmm. 
   And – oh, yeah, I forgot – I was in the E.R a bit over a week ago with a leaky catheter that had to be replaced.    
   At this rate, I’ve been going to the hospital once a month – or at least once a month – this year.  I’ve lost count.  Three of these visits ended up with my staying in the hospital. As I think I said before, the E.R should reserve a bed, preferably in one of those private rooms, for me! 
   On the other hand, even as I’ve had these setbacks (which I’m trying to see as just another thing I now deal with rather than crises), I’ve been making some real progress with the new speech device that I got two years ago.  (For various reasons, mainly involving funding, it has taken this long to get the device set up so that I can use it.)
   With help from a speech therapist and another therapist specializing in assistive technology, I’m learning how to use the device for actions other than speaking. (I can also again play my iTunes on the device!)  For example, I can now, in conjunction with a cell phone that I recently got for this purpose, text people from the device. This is most handy when I’m out on my own and need help, including just getting a ride home, from one of my attendants.  I wish I had known about this years ago, way before I had the spinal surgery and when I had my old device and went much farther on my own and was trying to find ways to get assistance.  I should also soon be able to turn on (and off) lights and the television with and perhaps read books on the device. 
   One snag, though: now that Fall is here and there are some days that are cooler, there are times now when it’s too cold for me and my arm locks up and I can’t drive and go out on my own.  With the neuropathy that I now have, when I’m not hot, I’m cold.  I find myself wearing long sleeves when it’s in the 80’s, not to mention the 70’s, and everyone is in t-shirts.  Before my spinal surgery, when I would go to the gym at the hospital where I now see the therapists, there was often a guy there working out who would be bundled up even when it was hot and I’d be in shortalls with no shirt.  I no longer think the guy was crazy, and I fear that my new practice of going out on my own, which I treasure, will be sharply curtailed and probably stopped when it gets cold later.  I don’t know if sweaters and jackets will help, and I can’t put them on anyway with the harness that keeps me in my chair.  I may try wearing pullovers as shirts and hope I don’t get too warm when inside.  (All this makes me particularly sad, because I find Claremont especially beautiful now and in the coming chilly months.) 
   Then again – again on the other hand – I recently got switches attached to my joystick box which enable me to more easily turn my chair on and off and put it in tilt mode. I continue to be amazed at how little things or little decisions or little changes in my mindset – like realizing one day that I wasn’t sick and didn’t have to spend most of my time in bed and perhaps go out on my own – allow me to progress, even as there are setbacks now and then.

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