What's My Next Move?

The lousy news for my week month is that my experience with SoluMedrol seems to have been temporary. I am as bad (if not worse) than I was  before I took it. Every day seems to be a struggle. Oddly enough, I don't seem to be surprised by this; I just didn't expect this to be happening so soon -- know what I mean? But, if not now, then when?

Come June 28, I will have had my MS diagnosis for 32 years. The actual diagnosis was transverse myelitis/probable MS. It wasn't until October of that year,  when I had my first  bout with optic neuritis that I was given the official proclamation, "You realize that this means you have MS, don't you?" by the opthamologist. Well, no, and yes; I was acting as if it was MS (as was suggested to me) since June, but I hadn't really taken in the intricacies of what comprised a "proper" diagnosis. Possible, Probable, and Definite weren't yet part of my lexicon. That was then. This is now.

So what do I do now? Last year I tried to get an electric wheelchair and was promptly shot down by my PCP. I was just trying to stay one step ahead of the MS. Following my motto of "hope for the best, and plan for the worst." I have a manual wheelchair, but it doesn't fit in my house. It fit in my parent's house just fine. Theirs was a home on Queen Anne Hill in Seattle; it was only 1600 sf, but the rooms were ample, and the doors were wide enough for my chair. There was only one door that I had to watch my fingers when going through, and that was in the hallway. All of the others were 32".

Not in this house, though. I'm pretty sure a Jazzy could get through the angle from the kitchen and into the dining area into the living room and through to the hall then into my bedroom. That leaves out the bathroom which has a 19 1/2" doorway. To take a shower or use the toilet I would have to transfer onto my walker and DH would have to help me. Or, I would have to use a portable commode. Yeah. I remember those days, even 32 years later.

Been there. Done that. When I was first diagnosed our bathroom was upstairs. So were the bedrooms. I spent the first year on a sleeper sofa in the living room, and using a portable commode downstairs in our "little hall."

Then my parents hired a contractor and added a room onto the house. A bedroom/bathroom which was not only a lifeline for me, but also for my aging parents.  When I got married and moved out, some six years later. In 1997 and 2000 (respectively) they each ended up moving downstairs into that room at the end of their lives; so I guess you could say it was money well spent.

Also, they had a deck put onto the room, which was well used for all its years. Who knew that we would spend so much more time outside on that deck than we ever did in the yard? But we verily lived on the deck during the Summer. I also decorated it with lights two Winters, which was lovely as it could be seen from both my room and the dining room. OH, memories....

So back to my question - what is my next step? A call to my neuro? More steroids? Well, no. He said NO to steroids. He offered to prescribe AMPYRA for me, as it touts to aid walking. I will remind him when I see him in July that Ampyra didn't work for me, and he told me at that time that he didn't see it working on his other patients either, even though they said that "they felt better when taking it;" damned placebo effect.

A call to my PCP? I can't afford PT at $35 a visit so that's out of the question. I think I need an OT evaluation in my home to see what suggestions s/he might have for me. Perhaps this year my worsened condition will crack my PCP's steely demeanor and I will get some help. I so liked Dr. Shibata better than Ashley.

In the meanwhile, I have been freezing my ass off this Spring as the temperature hasn't gotten above 70* more than a few days at a time. The weather program on my desktop suggests that it will reach 80* on Friday, but that is also with showers. Will it also be humid? Well, this is the Pacific Northwest, so anything is possible.

Good Night, TTYL, and Be Well