I've been poofed for a while, nearly two months. I'm sorry!
In my last few posts, I mentioned having problems with Savella. Well, the doctor switched me off that and onto Lyrica, which I am loving. My pain isn't *all* gone, but it's not as bad as it was. And I know that for sure, because I got to compare non-Lyrica me and Lyrica me a little while ago. We couldn't afford my Lyrica refill on time. About 24 hours after my last dose, my body realized I wasn't going to put more medicine into it. I had nausea and diarrhea, but that wasn't the worst of it. The pain was back, and I thought I didn't have a point where I was sobbing in pain...I found out that yes, there is a point where I will be sobbing in pain. Well, pain, and embarrassment, and anger. I HATE not being able to do things. I could hardly move for the two days between my body realizing no more medicine was coming and me getting the refill. It was horrible.
I got signed up for a summer orientation conference at the college I plan to attend this fall. It's going to be difficult, but I'll be damned if I'll let hurting keep me from doing what I want. I have to work around a lot, but I'll make it. On that note, my meds are going to the conference with me-both because it's a two-day conference and there won't be time to drive home and take them, and because I'll need them...a lot of it will be "Hey, welcome to your new campus, let me show you our several-hundred-acre area while we all go around on foot!" and I expect I'll be in a lot of pain before it's over. The dorm I'm hoping to get into is in the center of campus, only a short walk from the main class buildings, the main library, and the aquatic center (because water exercise is one thing EDS'ers can do without messing themselves up even more). Hopefully that will compensate. I'm crossing my fingers to get an electric scooter (there are some for 199 dollars at Walmart that hold up to 170 pounds...I'm 140, dripping wet, so 170 would be plenty) but if I don't, I'll figure out how to manage, somehow.
I'm sleeping in my closet now, for a lot of reasons.
My cat would knock all of my bed things onto the floor and then pee on the bed anytime I left the room. As you can imagine, I wasn't real happy with that.
I still wet the bed. The bladder has connective tissue. When it gets full, instead of giving me a little notice ("hey, dummy, you need to use the restroom, get up!") it just leaks. It does that other times, too, while I'm awake, or tries to, so I keep near a restroom at all times. I have a plastic-backed mat that keeps me from ruining the mattress, but I am a twist-and-turn sleeper, and I'd often wake up with the mat shoved off to one side and useless.
The hard floor actually helps, confusingly. I can't tell you how, cause I don't know either, but it helps. I think the lack of springs is a good part of it, and the support for my entire body.
It's somewhere I can go to, turn off the light, and have absolute darkness and silence, something that really helps when I'm in pain. My body has enough to cope with, surviving pain...seeing and hearing things sends it into overload.
