Wow, nearly a month since my last update. Not a whole lot to say, I guess. Rather, not a whole lot of writing ability and energy over the last few weeks.

I’ve not spent a whole lot of time upright lately. Too much CSF pressure and autonomic trouble. Not thinking well, either. Stuff just gets jumbled, and a hundred different thoughts trip over each other bouncing around up there. I’m constantly popping my ears to relieve intracranial pressure, and I know I’ve got a leak into my sinuses, too. Where it is, I dunno, but I can feel it happen. I get a swell of pressure and pain, then I feel a pop kind of release, and either my ears start burning/tingling or my sinuses get all full and stuffy and start draining down my throat. Of course, my throat gets all heavy and full feeling, too, and I fight to swallow. I did get a swallow study recently, but it was on a good day so it didn’t show what can happen. It did catch the delayed initiation and early emptying, though.

The gynecological surgeon was great. Wonderful guy and doctor, and I feel very comfortable letting him cut me open. He uses robotics and does things laparoscopically, so it’ll be minimally invasive. He also has EDS experience. The shot did help with pain. I’d say it cut my abdominal pain by probably 70%, mostly down low near the reproductive bits, but still helped overall pain significantly. Now that the shot is nearing the two month mark, I can tell it’s wearing off, and my pain, laxity, and hormone troubles are returning. Just a confirmation that removing everything is the best option for me to avoid more pain and complications from laxity. I’m scheduled to see him toward the end of July, but I’m thinking about calling to see if he’d just schedule the surgery instead of waiting til my follow-up.

I have a good friend (fellow zebra who lives locally) coming on Monday to help me get through all my piled up medical admin stuff, and I think I’ll wait to chat with her about everything before calling him. (Really, just because I don’t have it in me today to deal with phoning strangers who may or may not be morons or assholes. #medicalptsd) My hearing for SSDI is getting closer – July 20th – so I need some help getting stuff organized, sorting through what research to send them, figuring out who to contact for what – not just for SSDI but also for the Mayo Clinic referral and the three new referrals my Endocrinologist wrote for me on Tuesday of this week.

Good news on that front: according to her, adrenal insufficiency comes with constant drops in blood pressure, not sporadic. So, even though she came in with a lecture prepared that I had to fight through to be heard, and even though she didn’t read any of the symptoms I’d written down for her, because my BP was normal that day, I don’t have it. *eyeroll* #yourefired   Anyway, I’m just gonna stick with that I don’t have it and go with her assertion that it’s all GI and neuro (i.e. autonomic) dysfunction. She did write blank referrals for a new primary care physician, rheumatologist, and gastroenterologist. Of course, she tried to lecture me about not having those already, completely disregarding my explanation of how hard I’ve been trying and how many people I’ve seen in my hunt for doctors who actually understand EDS, Chiari, etc. She went #typicalarrogantdoctor on me, cutting me off, talking over me, talking down to me, dismissing what I said – so I fired back with the same, eventually having to snap back with “I KNOW THAT. I DON’T NEED TO BE TOLD THAT. I NEED HELP FINDING THEM!” when she tried telling me for a third time that I need to have a primary care doc and rheumy.

So, as soon as I figure out which GI to see, I’ll start over with the scopes and motility study process, as well as Mast Cell and Small Intestinal Bacterial Overgrowth testing. I had scopes scheduled, but the doctor refused to believe me when I said I’m chemically hypersensitive and can’t tolerate any of the clean-out methods he suggested. I had been told in a support group that magnesium citrate would do the trick and was prepared to do it with that, but he refused to agree to it, and his nurse was shitty on the phone talking about it, so #yourefired again. My suspicion is that there are sections of intestine that have stopped moving altogether and will need removed/re-sectioned. That, and/or there are endometrial or other types of adhesions causing blockages that then cause overstretching and damage, infection, etc. Not sure, then, if I should get in to see the GI before a hysterectomy or just do the surgery so the surgeon can get photographic evidence for me to give the GI, since I’ve yet to find one who believed what I told him about what happens with zebras.

In other news…

My birthday was a couple weeks ago, and it took three tries to have the kind of fun I prefer for a birthday celebration. Mostly because the people I want to party with couldn’t come the first or second time, and the first time, even though one of my favorite people did come and I got wonderful gifts, I just wasn’t well enough. Fighting through, plus most people not coming just killed the joy. Finally did have some framily (friend-family: family you’re friends with and friends who’re like family) over last Saturday and had a blast: fire pit complete with a cot for when I needed to lay flat, What Do You Meme?, and sufficient intoxication for all (I apparently can’t drink even wine any more – threw up by the fire after two glasses. *My normal is 3-4 tequillas on the rocks.* #straightnochaser). I also “donated” my birthday to charity on Facebook, which was kinda neat. I set a goal of $248 to donate to Ehlers Danlos National Foundation within a 2 week time frame (I think – might’ve been closer to three weeks), and it got $260 in donations! I’m hoping for enough spoons to get Thank You cards made and out to everyone in the next week.

Hubby started his new job an hour south on Monday, and so far, he likes it. It’s a typical M-F 40-hour work week, and his whole department is a bunch of nerdy Libertarians, so he fits right in. Pay is about the same as he was making before, but there’s talk of someone leaving in a few months, which means everyone gets bumped up to fill that spot – translation: promotion and significant raise on the horizon within the year. The commute is a bit too much financially, and we fucking hate this town, so we’re thinking we’ll be moving closer in a few months, after he knows it’s something he wants to stick with for sure.

Also, check out my new compression socks that just arrived today!


I will totally be the girl in shorts or a skirt and knee-high dark socks that may or may not match my outfit while out and about. I already get stares for the back brace and cane. Might as well make myself more interesting to look at. So far, they seem pretty great. I was worried the toes would be too tight, but that’s not the case. They’re a bit too long, but folding down the top inch isn’t a problem. I would say that if you have wider calves these might be too tight. I’m 5’7″ and now weigh 110-115 pounds, so my legs are pretty thin, and these were snug getting on. Pretty sure they have wider calf option available, though.

Coming soon: hopefully, a post about #hottubyoga and #hammockyoga, and another about filing for SSDI in the US.