yes, that is what I have been doing. Learning how to build my own website. It’s been a pain in the butt, however, as I learn more and something actually works, it gets to be fun. There’s not much on it right now, so I am linking this blog to it. For a preview check it out.
Also, my OT made me some finger braces for now, that seem to be helping, rather than spend an arm and a leg on some others that may not work. I plan on decorating them… I’ll post pics soon
So, I went to the Occupational therapist and turns out my hands are more hyperextensible that I originally thought. She is ordering a finger splint sizing kit and is going to hook me up with some. I also have hyper extensibility in my shoulders quite a bit, which I knew, but seeing the numbers… its like, WOW. She is also going to bring in some custom wrists splints to see how I like those. It also turns out that while I have hyper mobility in my larger joints of my arms, I have a lot of weakness in my wrists and hands… so that will be something to work on. Hopefully the new splints will help.
I am still waiting to go back to Mass Gen for the meeting with their psych for the opioid assessment. In the meantime I am taking vicodin for pain. Also, I have another appt set up with the Geneticist with my brother so he can be evaluated and find out which type we have.
That’s about it…
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.
The last few days have been very stressful for me. Finally went to boston to the pain clinic. Basically said that I most likely have Fibromyalgia as well as EDS. I’m not suprised. Referred me to Physical/Occupation Therapy and gave an Rx for a new TENS unit. I’m seeing the OT next week. Hopefully I can get something for my hands. The ring splints is what I am hoping for, I think it will help TREMENDOUSLY with typing, crafting, art, etc, etc. They also what me to see their psychologist for a opiod risk assessment… I already see a psychologist and a psychiatrist, so I don’t get why they can’t do the assessment. Whatever. I’ll do it. For now they don’t want to change my pain meds until I have the assessment. Fine. They did say that increasing my Effexor will help with the pain, so I am going to talk to my drs about that. Anyway, here is a picture while waiting for the train into Boston.