bbchien
Touchdown! Greaser!
Kinda a different treatment plan than before eh?
Glad you made the pilgrimage....
Glad you made the pilgrimage....
. . . .Some interaction is inevitable . . . .
Kinda a different treatment plan than before eh?
Glad you made the pilgrimage....
Oh... yeah. I also knew it was time a while ago to quit smoking again.
In all... very encouraged.
Want me to drop off a pint of 100LL to sniff instead....Quick update.
Seems like not too many awful steroid side effects.
Have to take so many stupid pills (steroid, antibiotic, acid reducer, occasional pain meds if needed, occasional bowel meds if needed, the usual statin for cholesterol, blah blah...) that I set alarms on my iPhone for them. In the isolation stuff / kinda normal work from home for me, it kinda feels like one of those Pavlov behavior tests. Ding, pill. Do stuff. Ding, pill. LOL!
Have seen some minor neuro changes already in less than a week of treatment. Pain levels nearly gone in hand and it works better. Less numbness everywhere else overall including feet which was the big worry if that continued to progress, for walking and driving.
Definitely think my Mayo neuro was right to start this, virus silliness or not. Stopping and apparently (yay) reversing progression of the neuro damage was the clear and present danger.
Also have been off the cane since about two days after the massive blood draw at Mayo. I suspect it pulled a bunch of inflammatory agents out and that week was good and now the steroids doing their thing. The week in between things went back toward the bad direction, so by a couple days back home the cane was desirable and now, on the steroids, not.
Very cool confirmation of this going the right direction. It’s subtle because the cane never was heavily needed, but I felt more confident with it. Now I don’t feel like I need it.
Been kinda busy indoors too much the last two days. Probably go take a nice walk as PT replacement.
PT is setting up telemedicine to help folks figure out how to do exercises safely at home, I may schedule a couple sessions just so they can give hints on what to get to doing as neuro things get better to beat back some of the atrophy that occurred. I suspect I can rebuild some muscle in the hips now if I’m walking this well.
Being able to sit in a chair for four hours without having to immediately lie down from neck pain is also huge. Have to do some of my work at a real pair of monitors and a keyboard.
In all... very encouraged.
Oh... yeah. I also knew it was time a while ago to quit smoking again. Once we had the sarcoid diagnosis it was a given. We picked up nicotine patches and hard candy (the candy ain’t great for me on steroids due to what they do to blood sugar but I know me and the hard candy worked the last time I quit, so moderation...) in MN and I haven’t bothered to count days, but smoking is over with.
Irony... pulmonary doc saw no problems from it all and said it’s not ever been a linked cause of sarcoid but just quit now anyway. Done.
I’ll take up sniffing glue. LOL
[snip]
And ahh, taboo topic I suppose but whatever... also constipated. Ha. Either the steroids or the antibiotics. Even taking the big gun stuff doesn’t help much. LOL. Maybe I’ll resume that bodily function in ... June? Ha.
[snip]
So.. steroids. Not too awful I guess. Have weird hour long blurts of extra energy sometimes and sometimes the opposite.
Can’t tell if it’s the steroids or just virus hideout boredom haha.
Sleep settled into a decent but weird rhythm that matches the pill alarms on the phone. Ha.
And ahh, taboo topic I suppose but whatever... also constipated. Ha. Either the steroids or the antibiotics. Even taking the big gun stuff doesn’t help much. LOL. Maybe I’ll resume that bodily function in ... June? Ha.
Good news, Nate! As to the constipation: the one time I had a high-dose course of steroids, I had the same problem after about a week, close to the end of the course. It was BAD and I ended up in the ER, followed by a colonoscopy - and it was only relieved by the bowel prep. It was never explained, but I had a theory that it might have been due to a spike in blood sugar due to the way high dose steroids mess with glucose metabolism. I assume you're monitoring your blood sugar? That is something I didn't do at the time, but definitely will if I ever have to go on steroids again.
How's about Dr pepper? I hear that has prune juice qualities.
I didn't follow the entire thread so I may have missed it, but have you tried massage for any of these things?
You can do a lot of that yourself with a foam roller.I had and it didn’t help much during the downside but I suspect it would be quite helpful now.
The PT does this thing with a flat piece of plastic pushing along the tendons to stretch the outside arm and tendons that go to the wrist, before exercise, that’s divine.
Nate,
Great to see the progress. Does this offer some glimmer of hope to be in the air again? Or is this too early...
...And right now I don’t really want stable! Ha. I want better!
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