Hi everyone. I got my hEDS diagnosis this week and am wheeling thru alll the feels. First was vindication. Then wait I actually have a thing? For real? Today I’m sad and lonely about it and could use a friend or two who’s been there. The doc said to get the Muldowney Protocol book. Step one: Assemble a 700-person crack team! Like I haven’t been plowing thru medical professionals to find just *one* who has ant shred of a clue and isn’t an a## about it. Step two: brace/fix those abdominals. Yet another expert resource that seems not for me. So I’m sad and overwhelmed because TZC has been the ONLY place that’s made any difference at all in my pain these past years. But I’m so eternally grateful that I found my way here. I now understand that I overstretched my thoracic spinal ligaments and they’re not going back. That’s why I hurt all the time and why activating them feels so good but never stays. My explanations are correct, not the ravings of someone seeking medical attention because I have nothing better to do with my time. I now know that what I was telling docs about my SI joint and the numbness down my leg does actually make sense and is valid. And that yes, fascia can feel like being shrink wrapped every day and cause the intense facial burning I had for nearly a year. So yeah, I’m angry. And sad. And feeling like I can trust myself but that I’m on my own yet again. Except that I’m not. Here you all are. Thank you so much @Jeannie Di Bon & THZ 🙏🏽

Posted by Ono Miko at 2023-06-14 15:35:05 UTC