Still me but different.

Not just older & wiser. Fundamentally changed.

I wrote about this yesterday, but had some additional thoughts about it. Recently, my physical therapist wanted me to try something completely new, to me, anyway. She set me up to use a contraption called a “standing frame.” As I told her, I had heard of these, on an episode of a show from years ago. I think it was called “Wheelie Girls,” but I’m not certain. I envisioned it as something resembling Michelangelo’s The Vitruvian Man. That’s not what it looks like at ALL. The first time I got into this torture device, I thought, now I understand those t-shirts that describe physical therapy as pain and abuse! My body has become so strange, that normal positions are very difficult to achieve. Even normal stretching, which I was doing a few months ago is almost impossible. When I got strapped down into this thing, there was a table-like area in front of my chest where I rested my hands. Then my PT began using a lever to slowly raise my body to a more complete standing position. Each pump of the lever hurt. I mean, it hurt a lot. I knew it had been some time since I had actually stood completely erect, the way that most people stand. But I didn’t realize just how tight my muscles and deformed my posture had become. My husband was there and I asked him to take a couple of pictures.

I was amazed at how rapidly I improved! Now, though, the people who run my PT clinic and everything else to do with my “special-ty” health care have decided to close down my neurological physical therapy clinic! Why?? The place is almost always packed and it can be hard to find a parking spot! How in the world am I going to find a PT as smart and skilled and compassionate as Taylor? I’ll have to start over, to some extent. I’ve worked with Taylor for almost four years! I don’t know but suspect it’s a cost-cutting move. My PT has been as critical as my neurologist in managing my chronic damn illness-multiple sclerosis. I’ve already contacted said neurologist about this dumb move, but I doubt even he has any power to change it.

There have been discussions about purchasing my own standing frame, so I could use it every day. This miraculous piece of equipment is super cheap. Oh hell no, that’s a lie, and you had to have realized it immediately. It’s in the multiple thousands of dollars. The other obstacle is that I won’t have my PT to guide me further. I intend to hunt a new one down, but I don’t know how long that might take.

I’m doing all of this hard work, trying to preserve every single bit of function I still have until there is finally a cure (not holding my breath), or at least a drug that can stop progression. You know what I haven’t even mentioned yet? The emotional toll that all of this takes on me and my SHH (for you late comers, SHH means Super Hero Husband) and our daughters. The worries: will I get even worse and how rapidly will it happen? I have begged my husband to not allow me to go into a nursing home! After these past few months, I’m not sure that’s fair. Oh I still don’t want to go there, but what if my care begins to affect his physical health? I’ve tried so many drugs with varying degrees of effectiveness, but how many more is it going to take? Twenty years ago seems like a mere couple of months, but I AM getting older, which is generally not great for any stinking illness.

The one good thing that has come out of this is that we are determined to do the “bucket list” things. We won’t be able to do every single one, but by damn (something my mom used to say), we are going to try. All I need is for my neurologist to help me get out of the nearly constant pain.

I guess amongst people with MS, I’ve been lucky in some ways. Diagnosed more than thirty years ago, I have had very little pain. That is, until about six months after I stopped working, so almost ten years ago. That, sad story followers, is going to require at least one or two more posts. I actually hope my story doesn’t seem sad to any of you. I am a fighter. I always have been; it’s just that my battles have not been the ones that I expected. Until next time, I am fighting on!