I have absolutely wonderful news! I saw my rheumy yesterday, expecting more of the same lack of patience, education, and understanding. I was so pleasantly surprised that I'm still smiling. First of all when she asked if anything was new I told her about the small joints dislocating, large joints subluxing, and that I was practically housebound from pain and lack of mobility from my ankles not staying in place. She listened this time. Oh my God, she listened this time! I told her that at this point I'd be happy being able to go to the library again, which I haven't got to do in a year. I think she was surprised at how much the EDS affects my life. I told her I do not want any narcotics and she agreed. I asked her about going to a pain clinic but she said the ones around here just give narcotics and nerve blocks, neither of which would help me. She looked at my completely flat feet and said she was writing me a prescription for orthodics. Awesome! Then she wrote me a script for physical therapy in the pool, occupational therapy including hand therapy with possible splinting of fingers and wrists, and possible ankle braces! She also kept the MRG from the Ehlers-Danlos National Foundation and the printout on EDS from Mayo Clinic. I am so excited! I have all these plans like maybe after enough therapy I can walk with Jim in the park or make him a dinner he hasn't had before. He always cooks and I'd like to be able to cook for him, too, sometimes. I'm also an excellent baker. :-)
St. Louis, Missouri, USA
I am no longer worried about the symptoms I have that I think/thought/whatever point to something neurological. I don't want to know if anything is wrong so I operate on the basis that nothing is wrong, which settles nicely on my shoulders. I think that all of those symptoms could very well be normal. The only other options I don't like, so I pick this one. :-)
I've also been having problems with feeling like I'm lost among others so different than me. I self identify as a lesbian, who, for this lifetime, found her soul entwined with a man's. I love my DH more than anything, and he isn't "less of a man" for having a lesbian partner. It's just how things happened. I have met very few people online in the LGBT community that accept me because I am with a man. I do not like to be told my sexual orientation, because no one knows that but me. I am not bisexual. I am gay. No one knows what goes on inside me, but me. I want to be accepted and taken seriously on how I self-identify. When I lived in the town I lived in before I met DH, I was around a few other gay people all the time. Here I don't leave the house much and have to depend on the internet and snail mail pen pals for social interaction. I don't really have any gay friends now, except for a few lesbian pen pals, but I don't hear from them more than once every one or two months. So I feel lost in a field of slightly to majorly homophobic men in this household, except DH, who is very open minded. I feel like I am lacking female companionship, especially LGBT friends. I so very often feel alone sometimes.