Sunday, November 9, 2008

Catching up and moving on

An update on *My* Myasthenia Gravis: I was really pleased with my ability to walk from the bed to the bathroom while we were in Jonesboro Thursday night. I told Jim I wanted to try walking to the bathroom rather than riding the chair in there. He looked dubious, but let me try it. I've been telling him that if I do not try things with him there, then he will never believe me whenever I say I can do it. He stands nervously by as I attempt what he considers the impossible.

Here is a picture of my side of the room to show just how far it is from the bed to the potty. My chair fits just exactly between the bed and stand, with the sink and bathroom almost exactly at a 90° turn from where I am taking this picture. That is as close approximation that I can give for the distance I walked...... about five steps.


Comfortably I get out of my chair and take off running easily toward the bathroom door, my legs feeling substantial beneath me. Back into my chair, dressed for and into bed. WHEW! Tiring but exhilarated. Inserting here, when I checked in to One Day Surgery Friday, I weighed, and was able to walk upon the scales more easily more easily than ever before. Now, I'm not blowing this out of porportion, nor have my expectations so high that they will not last nor are unattainable, but it does give me reason on which to base *some* hope.

I *have* had some considerable depression, and do not know what to do about it. I am not happy with my current status, but what can I do, for I think a lot of my depression is environmental.I *have* had to take a few mg of mestinon for about the past month or so, maybe six weeks actually. We talked to Dr. Cauli about that and he said to continue doing it as I considered needed. Stress is a factor. My eyesight has been pretty bad lately, and that is one thing I judge the MG status, and about how much and how often to take it.

My speech is clearing, too. Whereas my mouth muscles had been terribly hard to maneuver, *I* think I am speaking more clearly lately. I had not thought about it until writing this, so that is a good sign that I have not been stumbling when I talk. I can almost say "differentiate" later in this blog. Hip hip hurray!!!! In fact, everything seems to be a *bit* better tonight, and was when we were at the hospital Friday. I was able to carry on a very decent conversation with Dr. Phillips (Phillips County)

So, what is coming up this week? Tomorrow we head for Memphis for a CT at my urologist, Gubin, to check the "loaded with stones" status. There has been a lot of pain on the right side, and downward, with significant bleeding. This makes me think it is all caused by the urethral caruncle, and hopefully not the stones. Elimination of the caruncle and previous stones occurred about the same time before, so it was hard to differentiate tell from where the elimination of pain came. The bleeding also stopped at the same time, too, as well as recently when I have restarted the medication for the caruncle.

Then, tomorrow afteroon I see Latif, my endocrinologist for my diabetes, and hypothyroidism. That I am looking forward to. He has always been one to help me, and get the things I needed, and given me the information I needed. For instance my chair. Two and a half years ago he was the one who got me my chair. Back, earlier this year, he is the one who told me what my infection was all about that I picked up in the hospital with steaks going up my leg, and they gave me an IV antibiotic. Staph. My hero. Wish he would let me take his picture for my records.

Thursday! My man Schnapp! My pain specialist. He was in a bad mood the last time, plus I didn't feel very well then, either. We didn't gel at all. Bless his pea picking little heart. With all I am dealing with, I guess we do get along with my doctors pretty well after all, especially from what I read from other people. But then, maybe other people don't try hard enough to get along with their doctors. None of us is perfect, no matter how much education or whatever is or is not behind our name. There. That's some liberal sleeking out. Actually......... well never mind.

So much for now. Can't think of anything else. Except, oh, yes...... I am still losing weight, and the reduction in Prednisone is not bothering me at all.











2 comments:

Diane said...

you are an amazing lady.

Ragdoll Billie said...

Oh, no, Diane, but thank you so much. Your words do mean a lot. Go to PAC2 and read there. You will find overwhelming courage and strength. No matter what we are dealing with, there is always someone with more.