Saturday, March 19, 2022

Unexpected but predictable nightmares

Morning meds

 I was sure that after my first (very exciting) time back at the movies the other day , I would have nightmares about the difficult topics and tragedies shown in the Oscar-nominated Live Action Shorts, which I saw at the Amherst Cinema. In the Before Times, I enjoyed seeing all of these shorts (three of them, including animated and documentary), and plan to see the other two. I had asked friends who went to the movies if they felt safe, and they said yes, there was nobody there. Sure enough, it was an audience of five, all of whom had to show proof of vaccination and wear a mask. I hope the Amherst Cinema can stay in business. I made a donation according to my means...which is not a lot. 

But my self-conscious is so myopic. I had a nightmare about my pills and my disintegrating fingernails. Or maybe that's just the way the brain works.

I wrote about all the pills I take. The Valtrex is one big horse pill. Once time I choked on it and was alone and thought I was going to die. It was stuck in my throat, and I felt like I couldn't breathe. I live close to the fire station. I don't know what I was thinking, but I ran to the door and thought of running down the street to the fire station. Then suddenly it went down. Now that I have been off prednisone for a while, maybe I can stop it or cut down.

Interestingly (OK in journalism you don't use that word because your words are supposed to be interesting and you shouldn't point it out to the reader but it's my blog), I was just listening to Terry Gross interview a doctor, Dr. Jonathan Reisman, who wrote a book, "The Unseen Body." Each chapter is about a specific body part or body fluid from his perspective as a doctor. He was talking about what he called the "fairly stupid" design of the throat, like so: 

"Specifically, the throat has to take food, drink saliva, other things that we mean to swallow and make sure they go into the one tube, the esophagus, the food tube, which goes down to the stomach. The tube right next to the esophagus, literally millimeters away, is the windpipe, which goes down to the lungs. And every single time something passes through the throat, its most important job is to make sure that that - whatever it is besides air does not go down the windpipe... If you try to talk while swallowing just once or laugh with your mouth full, as we all know, sadly, you know, you can aspirate, choke and die just from one little slip up."

Well, I haven't choked on food, knock wood, but I am always choking on my water or whatever else I'm drinking. For someone who eats ridiculously slowly, I seem to INHALE my water rather quickly. In any case, I dreamt I was choking on a big pill as was the case in real life.

As for my fingernail nightmare, I dreamt that someone looked at the finger without the nail and said, "EEEEUU," or however you would spell the expression of someone saying something is gross.

Back to waking life, another nail is partially off. Someone asked how many are involved, and I counted six. The steroid injections in my cuticles are scheduled for Wednesday in Worcester. I can't exactly say I'm looking forward to it but I am looking forward to getting something done about it.

Friday, March 4, 2022

Coming soon: Steroid injections in my cuticles

If you know me at all, you know I like to do things differently. There were the three Caesareans and the four stem cell transplants, the coma followed by the "your mom might not make it through the night" event, the three-plus months in the hospital, incidental discovery of kidney lesion, and the graft vs. host disease of the skin, requiring a couple of years of my blood getting taken out, zapped with radiation and put back in, a.k.a. extracorporeal photopheresis for graft vs. host of the skin, or ECP, the fall on my head when I was running around the lake and the fall on my head two weeks later when I fell off my bike...

Well, those are just some of the things...

The ECP wasn't that unusual though unusual to me when I first heard that I needed it to fix parts of my skin that were hardening and getting lumpy and bumpy. I had weaned to every three weeks after starting by doing it every two weeks at the Kraft Family Blood Donor Center at Dana-Farber/Brigham and Women's. Maybe I did it for two years. I have to admit I lost track. I was going to keep cutting back but had to stop abruptly when the pandemic started. My skin stayed OK though, even though I went off prednisone after being on it for 12 years, as I described in this post. 

I was on such a small amount, 1 milligram, that going off it does not seem to be a cause of a new crazy thing: MY FINGERNAILS ARE FALLING OFF!

Just had to put that in caps...

OK, so, it's just one fingernail that fell off. OK, so I helped it off. It turned white, a sign, my fingernail specialist dermatologist said, that the nail had died. It was loose like a baby tooth, and I wiggled it off. Katie gave me a princess bandage so I could cover it up.

Half of my fingernails are OK, But the others are discolored and ridged. 

A fingernail biopsy showed that I have GVHD of the fingernail, or more precisely, fingernails. Yes that is a thing. 

At the end of this month, I have an appointment in Worcester with a dermatologist who specializes in diseases of the nail. She is going to give me steroid injections in my cuticles. On the bright side, she is lovely, as I explained here

Enough of that for now at least.

I am not sure if I mentioned that I got the fourth shot that immune compromised people could get.  That became my booster, and the first three became me original series, or something like that. Same as when I got my 1st booster a little early, I didn't have to do anything other than answer yes, when I signed up, to the question of was immunocompromised. Moving off the health topics...

It has been nice to have some people over for coffee with the COVID situation easing. 

One of the friends brought me cheerful flowers that have been cheering me up.