Saturday, May 25, 2013

Where I've Been

Its been a few months since my last blog post (the one before the most recent review that is). Its been hectic dealing with the kids and myself lately. Firstly Seamus has not been his normal self at all and we've been having to go to the doctor once a month just to do more checks and med checks and trying to figure things out. He also lost his IBI therapy because he's not considered disabled by the federal government (i.e. he doesn't qualify for SSI so he's not disabled :/) and we've been having to figure all that out and find a way to get it back for him.

On top of Seamus' stuff I had another appt with the MDA and she still doesn't agree with the NeuroMuscular SPECIALIST that I saw in December. At first she agreed but then because I don't have scapular winging she said she doesn't think I have FSHD, but everything fits other then that (again :/). So now she wants me getting a DNA test done to see what it says, thing is its over $1500 for it and even with the financial assistance from Athena Diagnostics it will cost me basically $400 that I don't have and can't come up with, so that test is out the window and I'm in diagnosis limbo yet again. Right now I'm sticking with the FSHD diagnosis that I got back in December (not sure if I posted about that, one day I may).

I'm also starting to have more troubles with my shoulder and its becoming worrisome. To top it all off my leg braces broke back in April. I took a step off my front porch (about 2" high) I heard a snap and my knee gave out and next thing I knew I was on the ground. I narrowly missed hitting my head on my car. My left leg brace completely snapped in half and I have no way to get another (as they're $250 each through the local orthipedists office, but I have to see a doctor (more $$, yay being insuranceless!) to get a new script since mine is 2yrs old), and of course the one that broke is the one for the leg that has the worse complete paralysis foot drop (not that the right is much better at a 1/5 score 0 being completely not functional).

So thats a rundown of whats been going on here! Hopefully some better updates soon. And lets cross fingers that Idaho steps up and extends medicaid so maybe I can actually see the doctors I need! (cause no way we can afford hubbys work insurance that with premiums and deductibles costs about half his  yearly income!)

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