Thursday, December 29, 2011

Shout it from the rooftop or just cry, either will do

I just spoke with the geneticist. The biopsy taken over the summer came back a little while ago but we had been playing phone tag. I definitely don't have Type IV (which we knew anyway). Which means based on clinical findings and tests/procedures, I have now officially been diagnosed with Hypermobility Type EDS (which, again, we already knew and were treating for).

It was a bittersweet call in many ways. I cried when I hung up the phone. But I'm not sure what the tears were really for. I'm already getting treatment for a number of issues going on surrounding the EDS and likely dysautonomia (that one hasn't officially been diagnosed, but again, we've been treating it as such). And I've known what it was for years. Now it's as real as it can be. And I'm going to fight that much harder to make sure that it doesn't change my life for the worse.

EDS, you can bite me. Real life, we're gonna win this one!

Wednesday, December 21, 2011

Physio, day one

Given how unfabulous my last experience with physical therapy was (for my chest pain, a few years ago), I'm very thrilled with how PT went today. I had an evaluation and did some basics with a very great and understanding therapist. She determined the weakest points in my body (as far as large muscle groups and joints are concerned) and where my balance was good or needed work (I balanced on my left foot better than my right, but did better raising up on my toes on my right foot before my balance left me. And we also learned that I don't have balance with lateral/side to side head movement (almost hit the deck twice doing that). I have some exercises to do for my hips (she could feel the tendon snapping in my left one as I practiced, so we altered slightly to make it more helpful than harmful), and two for my shoulders/rotator cuff as well. I won't be able to make it back until after the new year, but I have 12 sessions total and I'm actually looking forward to it.

I have been so very grateful for my intermittent FMLA and it's only been a few weeks. I like the idea of actually being able to take the day when I have an awful day. But I am really hoping I can use those days sparingly (I am still hoping to have a J-tube within the next year...really just hoping the SLU group can figure something out or at least listen to reason).

And today has been a wonderful rest and relaxation day after PT. Which is wonderful :)

Hope you're all feeling well and having a good day. If not, we'll keep hoping for a better tomorrow.

Sunday, December 11, 2011

Dysautonomia, how do I heart thee?

Apparently not all that much since my heart rate hasn't made it to 50 in the better part of 12 hours. Even though I'm tired, it's not a horribly dragging or sluggish tired. Mostly I just feel like my heart weighs ten tons (persistently low heart rate leads to turbulence...can you actually feel turbulence in your cardiovascular system...?) every time it beats. That's the part that's exhausting.

So, while I wanted to stay out here and work on moving some PDFs to the Kindle, I think that's gonna have to wait. Time for bed, time for horizontal, time for a lot less heavy thudding in my chest.