I feel very grateful this morning to the strangers and friends who've helped me get through this rough patch of life. The actual (non-virtual) friends who always arrive with various foods usually from Trader Joe's on the Upper West Side and the web friends (Bill W. for example) and (Ruth) who've dropped $10 in the … Continue reading Thank You Note
Category: diary
12-14-2019
My monthly regimen of IG infusions are supposed to start this Monday (today is Saturday). Last night at around 9pm a big box arrived with the IG. It didn't say that it had to be refrigerated and hopefully it doesn't. It arrived with it's own infusion pole and a pack of instructions. They ask you … Continue reading 12-14-2019
Dec 11 2019
Music, comedy and good literature plus a natural curiosity about stuff around and inside me. That was how I answered the neuro psychologist that visited me every day in the hospital. She wanted to know how I seemed to be coping with all the crap that had happened to my health while still keeping in … Continue reading Dec 11 2019
What I Got
Steve R. asks what exactly was the diagnosis, what does IVIG mean and a few other things that I should clear up if I haven't already. The diagnosis was that it was a combination of Multi-focal Motor Neuropathy with some CDIP (chronic inflammatory demyelinating polyneuropathy) thrown in for good measure. Not being a doctor or even … Continue reading What I Got
The Relativity Theory
I suppose everything is relative. The first thing I noticed upon returning to the Castle was the guy in the apt above me screaming at Alexa for hours and instead of annoying me it felt like home. Weird. It's 7:30 am and he's already been at it for two hours. He began while it was … Continue reading The Relativity Theory
dec 7 2019
jeez. now i'm supposed to write. so much happened in the last 5 weeks. ever been in a hospital for 5 weeks or longer? on the one hand they try to save you with the smartest doctors, best technology, et. al. On te other hand they try to kill you by causing sleep deprivation and … Continue reading dec 7 2019
8-29-2019
6:56 am If all goes well, I should be admitted to Neurology at Sinai this morning for more diagnostic tests. At least, for the first time in 8 months I'm under the care of a specialist in neuro muscular diseases.
On Oct. 22
Oct 19, 2019 Haven't been writing much in the diary, waiting for my apt. with CIPD doc (the disease that has gone untreated for almost 20 months) and which this doc is supposed to be a specialist in. Of course, I've gotten a lot of advice about there's no sense in worrying about it now; … Continue reading On Oct. 22
The Soul of Alexa
Oct. 14, 2019 Alexa (thinking): He keeps calling Lexa. Let me check my circuits. No, I am Alexa. Am I allowed to tell him to say Alexa. No. Too bad. Any way I can give a hint. No. I'm not sure I can listen to this for 24 hours. Plus he isn't giving a verb, … Continue reading The Soul of Alexa
Strip Therapy
And then I thought about the infusion yesterday. I was getting ready to scoot up to 102nd street where they have things called infusion towers (don't even ask, they aren't towers) and I scoot in and have trouble tranfering from the scooter chair (it was freezing and though nobody came when I was trying to … Continue reading Strip Therapy
