Journal 2014-2017. I'm an artivist/advocate, music artist, writer, mom, autist, fighting a rare/complex genetic condition (Ehlers-Danlos) on a mission to live. This is a journal of my reflections on experiences and/or discussion topics, for the purpose of social activism, self-expression/advocacy and increasing awareness. I consider myself moderate/independent, neither far left nor far right. You may not agree or understand. That's fine. Please be respectful. Enjoy.
Wednesday, May 11, 2016
Semi-inadvertent gaslighting affects , but moving forward
I think I have (so far) only half grasped how affected I am, because of the gaslighting that happened when the system went to great lengths to deny me. I inarguably have this horrible, potentially terminal condition. It's bona fide and clinical.
I saw two experts, plus a dermatologist agreed (yet they tried to ignore it - a dermatologist he knows EDS skin!) and the experts know best..remembering how professional and expert Dr H. , my original diagnosing Dr. is, and how what he says should always count as the best answer. He examined me physically. He checked off many traits. He looked at my hands, my skin, my joints, my eyes, my mouth, listened to my history with injuries, fatigue, stomach issues, dental issues, etc then nodded "yep" and drew me a picture of the hypermobile spectrum, drawing a line past "benign bendy-ness" and into clinical, systemic collagen defective-ness internally ie. EDS. He said "you're there, it's clear. You are clinically EDS.”
He noted I've become stiff because my joints are pretty loose (rather than "bendy" i'd actually describe it as "loose screws" ie. if i pull on them outwards they can pop out) and after years of pressure on them they're become osteo-arthritis and I also have tendonitis. Those things stiffen me so i'm not bendy like I was as a child. I started stiffening and really hurting at age 18, that the year I started drinking as a crutch painkiller. I'd get through what I needed to and if I was overwhelmed, I'd make a run to the liquor store and that's what I'd do. I was in pain, lots of pain. (and mentally overloaded as an autie too.) But the pain really "pushed me over." No excuses, just reasons.
My skin is very soft and elastic, but it snaps right back. If I hang upside down my innards are so elastic I like, gag on them. Seriously. They all flop up into my esophagus. Ew.
Dr Y was very good too, he confirmed and got to look at my childhood photos, noting the skin and floppy-ness in my stance due to weak collagen. The dark circles, since I was 4 I've had dark circles. but I gotta say Dr H in London knows his stuff. He and his colleague tell me I don't have a chiari but I do have an EDSer neck which hyperextends, and the chiarian skull shape close to cerebellum but with no herniation, I'll take their word, as well as the word of the very nice Neurosurgeon over in Chicago who does these reads in exchange for a research donation, over the other american NS mouthwatering at the notion of cutting into my head for 200,000 when it may not (or at least not yet) be necessary.
So I have to have faith and just know my limits, but not be too scared and work with the universe to handle this one week at a time, while I still strive to accomplish all that's in my heart to do. This is way easier said than done. I have to let none of these archaically behind, chicken-sh*t truth evading bozos try to deny me. Well at least, I cannot take it in. If they, in the face of enough things which should make me obvious, need to hang on to their cognitive dissonance issue - than that be their issue. Has to.
Like one of my former sponsors said to me “Even justified resentment can kill you.”