Gooood morning (where I am :) I am new to the ZC and this is my first ever post to anything social media related. So I’m a newbie in several ways, but not in the world of EDS, dysautonomia, POTS, mast cell activation, and maybe one or two other sneaky illnesses I’ve been trying to identify much like the process in the “whack a mole” game. I’m 54 yo female and could talk for hours about my story, but really just wanted to offer a bit of encouragement for those of you on the front end of getting in with specialists. If you are inundated with completing required pages and pages of assessments, intake forms, diagnostic “tools”, and other documents required by what might be numerous doctors before they agree to see you, you are not alone. And, yes, the paperwork process can be daunting and flat out overwhelming and even paralyzing if you are struggling with cognitive issues. It can be brutal. If after the first two rounds of paperwork you diligently, through great frustration, commit to accurately capture all of your symptoms only to realize after you completed your third round of paperwork for the third medical entity yet AGAIN you’ve left off symptoms you struggle with daily/weekly. You’ve had some of these issues so long they have incorporated themselves into your “normal” and they have been your “normal” for years, in fact you can’t remember what it’s like to not experience them. Not only that but your thinking is so muddled that your answers don’t reflect reality because you struggle with taking in information and processing it correctly (eg., Q: Are you constipated? A: Nope. Not factoring in that you take 5 different supplements to keep you somewhat regular. Stop taking those, you become a brick factory.). Also regarding cognitive struggles, I don’t think it can be overstated the struggle too with finding the words to describe exactly what you are experiencing and if you can’t find the right words or it doesn’t fit into one of the fields on the form then you just don’t mention it. If these scenarios apply, I hear you. I can commiserate with you. I’m living in this place right along with you. But, let’s neither of us get swallowed up by our frustration, frailties, and failures. We are in a place where we are a bit more fragile in our thinking and doing. We realize—struggling to realize, our state of being is not other people’s “normal.” Ahhh, but this also means our victories come abounding! We have the rare gift of seeing how truly amazing the human body is and how “fearfully and wonderfully we are made.” We also can have the gift to see the slightest achievement as a victory! The completion of 12 pages of paperwork (be it imperfect) as a huge achievement— worth celebrating! Getting through a doc appointment and being able to at least partially explain what’s going— another achievement worth celebrating! Be encouraged. Don’t loose hope. Don’t be swallowed up by the seasons of discouragement. They will pass. Encouragement will come. Hope will remain even if it’s clouded over, it is still there. Let us both allow a thankful heart to grow in us. Thankful hearts exude health where health really matters. You’re not alone! I am praying for us both :)

Posted by Deleted (5d02a158) at 2022-08-12 15:42:30 UTC