PT, OT & Gym

Things are going well with the PT, we start pool PT next week. I do feel she's a bit like she's at a loss as to what to do with me. I asked her about helping me to learn to get up off the floor with out looking like a freak or screaming in agony. She asked me to show her how I was currently getting up off the floor, her jaw literally dropped. Guess that means I really was looking like a freak. We went thru a few suggestions & she's going to think more on it. It's almost not for for an EDS'er to go to PT, they rely on stretch & increasing range of motion. I did have her show me the ROM for a few joints, wow I was shocked. I am trying to stay with in the norm as best I can.

I'm not sure on the OT guy, I think I am beyond his area. He made a custom split for my super bend right middle finger to wear at night. He doesn't have Oval8s smaller than a 4 so those are out, he wants to custom make some thing up for me, but I'm kinda eh on that. He did slip me a jar opener which was sweet. He sent me home with a neoprene thumb splinty thing to wear all the time. I'm not used to it so I am just wearing it for 30-40 minutes, then off for an hr or two. I just feel he kinda didn't know what to do with me.

The OT, PT & I all talked about walking aides. The OT left after a few seconds so it was just me & the PT. we talked about crutches (platform & forearm) & walkers. While I will grant that my vanity isn't all that hot on a walker I don't think one would work for me. With the arms being different lengths I think that's gonna be a serious hindrance. The forearm look the least tacky to me, but I worry about my elbows, the platform just feel strange, not a natural movement sort of thing. Any other EDS folk reading this please comment what you use, walker, crutch, chair, litter with servants, whatever. She & I couldn't figure out what would work best for me & I told her I'd see that others are using & we talk again.

Since the water PT is at the gym I had to find out how to get to the dressing room & pool. I got the cute gym guy to give me the tour. Of course I was running late so I had no make-up on, oh well. He seems to be a nice person to chatter with. After he showed me the dressing room & pool I asked if he had time for a full tour & he did. I asked if they did badminton, I have never played, but if EFM can then maybe I ought to work on getting over my phobia & get to trying it. (I'd have to learn to drive to be able to get the chair there & that would be the phobia part.) They cute gym guy said only could I do wheelchair badminton, but I could do wheelchair pickleball (it's a hybrid of tennis & badminton played with like a ping-pong paddle). After the tour he gave me a couple of free passes so I may try the gym out a few times if the PT says that's ok. Nothing big just walking the track or trying to swim (I kinda don't know exactly how to swim, but I think I could fake it a bit to get some exercise).

Pins & Needles Hand

So needless to say with my shoulder & elbow having been out my hand is all pins & needles. I just feel like whining, but I'll spare you all. The elbow is back where it belongs & the shoulder is just about right, but just a hair off or I pissed off something in there & that's what's hurting, either way it still hurts.

On to other topics, I am off the Pamelor, couldn't take the side effects anymore. The biggest issue one being my heart going flutter-flutter-BOOM, that feeling wigged me out a bit. The neuro wasn't in the office when I called to say I was going to stop taking it. When her asst called me back she said the neuro didn't have my chart to consult, but if I wanted to try Topamax she'd call it in for me, unless I had kidney stones, which she thought I might. I have had at least a dozen that have passed & have at least 1 in my left kidney right now, so I passed on taking that. So I'll stay on my Neurontin for now. I have been reducing the dose a bit even though I I feel my neuropathy more. I am sick of feeling so tired & the neuropathy I have isn't going to kill me. I need a break from the drug right now & I'm not going to stop taking it, but a reduced dose for a few weeks should be ok.

I go see my GP next week & talk over who/where he'll want to refer me out to & what I want to be referred out to. This is also the appt where I decide if he is a doc I will be keeping. He did blow off a lot of issues I was having thinking they would just go away or something & I was thinking of firing him, but he had been getting a bit better & does seem eager to learn. A doc who can admit he might not know everything under the sun & is willing to not only take literature I bring in, but actually read it is a rare doc. So we'll see how this appt goes, see how much of the EDS data I brought at the last appt he read & if he & I are on the same page.

Oh & on a wonderful note the potty training is going wonderfully!

Two

That would be the number of fairly bad subluxations I am sitting here with right now. See it all started with a simple idea. Toad & I needed to swap bedrooms. Turns out I can't move a twin bed by myself. I can't get it to reduce right, neither will go where it needs to. My hand is major pins-n-needles now & my joints just ache, that deep, deep ache nasty pain. If I work hard I can push the pain back enough that I don't have to cry, but this is bad. I'm gonna take one of my muscle relaxers before bed & hope somehow the reduction-fairy comes in the night.

OUCH!