445d
It has been over a year and a half (Feb 2021) since I have suspected hEDS or HSD. I have been to an insane amount of doctors appointments, physical therapy, and after ruling out so many other things my rheumatologist has said he believes I have EDS. He said he can’t diagnose me, but will be trying to get me into a specialist who can. He said it’s extremely difficult to get into and even if I can’t get a diagnosis, it’s important to know what I’m dealing with (i.e. EDS). I am relieved, frustrated, and scared all at the same time! It took so long to get this far, and I’m so scared this is as far as I might be able to go. I’m basically just accepting it at this point. I’ve heard of EDS places not even accepting hEDS patients anymore because there’s just too many. I’m afraid that’s what’ll happen with me. But I need a diagnosis for SSI. I also deal with multiple other chronic illnesses and disorders and I’m trying to build a case because I’m barely working 10h/wk and I still miss shifts due to everything I suffer from.
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