No this isn’t going to be a whiney post… Ok, so maybe a little. Apparently my PCP spoke to my Geneticist. Fine whatever. The geneticist told my pcp that most people with EDS don’t need to be on SSDI full time (which was never my intention). However, it was the Geneticist that told ME that EDS is a very painful and debilitating disease and most people end up on narcotics for the rest of their lives. So how is one supposed to maintain a job, part-time or not, while on narcotics round the clock with impaired cognition and loopiness the drugs cause. Staying at home all day isn’t exactly my idea of fun, but when you are in so much pain that even breathing hurts… it gets in the way of daily life. I just don’t get it. I see the geneticist again in a month, to have my brother evaluated and try to pinpoint which type I have. I will also address the inaccuracies in her clinical notes.
I have been doing everything I am supposed to do. All on my own at that, haven’t had much help from the geneticist and the pcp just sends out referrals to whomever I ask. I know it’s not going to be a quick fix. I know it’s a lifelong, progressive, untreatable condition. I’m just waiting for it to be manageable. Right now… I feel as if I am in limbo.