Tuesday, Wednesday, and Thursday were all days with doctor’s appointments this week, and I’m absolutely exhausted from it.
Tuesday was another two and a half hour trip, this time to the neurosurgeon, and it was almost a complete waste. He basically wrote me off before even meeting me. He came in and started in on his spiel about not believing in Chiari 0 and didn’t even ask me what I’ve been dealing with. I told him what he was saying didn’t match up with ANY of the research I’d read, medical conference videos I’d watched, conversations I’ve had with others in support groups, or the actual symptoms I’ve been experiencing. Everything he said was basically “I don’t believe you. You don’t know what you’re talking about. I’m not going to do anything for you.” I tried my hardest to remain calm and respectful, but I know my face, tone, and body language made it ferociously clear that I wanted to bash his fucking head in. I’m still pissed, but at least he offered to write me a referral to Mayo Clinic. I’m not sure if he offered because I got through to him on some level that he might be dead wrong, or if maybe I just scared him into it. I guess I’ll find out when I get a response from Mayo. I know their acceptance of a patient depends entirely on the argument made by the referring doctor on behalf of the patient. This guy didn’t even bother to get any substantial information from me, though, so I’m skeptical. The only real bit he got I know he didn’t give more than a quick glance. Coincidentally, he’s the brother of one of Hubby’s Guard buddies, who is now a Nurse Practitioner. When we got home, I dug up some conference videos I’d watched and other research that proves this guy wrong, forwarded them to Hubby, and Hubby sent them on to his Guard buddy in case he felt compelled to educate his asshole brother a bit. I’ll get a post up soon with all that stuff, but migraine and neck say not today.
Aside from the undereducated mansplaining douche, the trip wasn’t as bad as the last couple. Painful, yes. Stressful, yes. But I didn’t cry until after the appointment this time. I couldn’t think straight enough to pick a food to eat so I just caved and had Arby’s because it’s what Hubby wanted. And, of course, Lil Miss Stresseater ate meat. I ate meat again last night, and I had several pieces of cheese last Saturday when my local EDS support group came over. So, digestion has slowed to a crawl and is ripping me in half again. Worth it? … Um… I dunno. No, not really. It just makes me remember what I’m missing, which makes it harder to stay away.
Wednesday was a new Gastroenterologist. He seemed nice enough and knew enough about EDS to understand without much explanation from me. He’s a goofy, small but roundish Indian/South Asian man (his accent sounded Indian/Hindi, and his first name is Krishna). Very kind, and he didn’t have his face buried in a laptop like most doctors seem to prefer these days. I’ll be getting scoped from both ends on May 26th and then doing a motility study after that. I’m not expecting the scopes to find much, but they did find a pre-cancerous polyp three years ago. With a family history that includes both Crohn’s Disease and Colon Cancer, maybe there’s a fun little secret tucked away in there.
Thursday I saw my Gyno, and we talked again about endometriosis and adhesions. I love this lady. She’s my favorite doctor, and she is everything a doctor should be – good listener, compassionate, keeps the conversation focused on me and my needs instead of her own ego. April 18th, I’ll be getting an intravaginal ultrasound to take a look at things, and we’ll go from there. She also stated up front that she’s not comfortable with anyone local doing any sort of surgery, even a laproscopic hysterectomy, so she found someone an hour south to refer me to.
I finally got a date for my Disability Hearing, too. I filed for SSDI in 2014 and will finally go before a judge this July. I’ve heard a few people with EDS say it’s hard to get approved for Disability because it’s so poorly understood. I’ll be giving my attorney a stack of research to submit before my hearing that should paint a clear picture of my situation.
This coming Tuesday, I go back up to another mansplaining douche to talk about my hip and knee MRIs. Not looking forward to that since he was such an ass last time. Maybe the scans will show him what I was desperately trying to get him to understand. I know the x-rays I didn’t want already proved to him why they were a waste of time. Hopefully, he’s figured out that I’m not full of shit by the time we get there.
What the fuck is it about men not being able to accept that a woman might know what she’s fucking talking about? I’m so sick of these arrogant tools dismissing everything I tell them, even when I’m holding the damn research in my hands right in front of them.
I’ve gotten the brush off from a few more “friend” people lately, too, so I’m feeling a bit discouraged. Add the incessant migraine, etc., and it’s getting harder to want to keep trying, keep fighting, keep wanting to move forward. I mean, what’s the point in me pushing forward and trying to maintain or even forge new friendships when it seems like nobody’s interested? Like no one actually cares beyond some superficial ego fuel? I’ve always been a bit of a loner, but I’ve never felt as alone as I have over the last couple years. I’m seriously desperate enough for friendship and social interaction that I’ll entirely exhaust myself getting the house ready for visitors because that’s the only way I get to see anyone and have real conversations. I don’t get invited out to anything except once or twice a year, and it’s always the same two or three people inviting me. I love them to pieces and never miss an event if I can help it, but I need more interaction than that. I’ve given up inviting most people over, too, because they just don’t come. You might remember me deleting a bunch of facebook friends a few months back – deleting everyone who’s essentially proven they give zero shits. I’m trying to replenish just a tad with new friends who actually do care enough to not just outright ignore me. Not going all that well so far, though.
Anyway, enough rambling. Time for more migraine meds and another nap.
Also, Trump is an absolute sack of shit. My apologies to all of humanity for his existence. I promise you, I’ve been advocating as hard as I can both on behalf of all the oppressed groups in the US and against our ignorant bigot political leaders reinforcing this asinine interventionism. As a Libertarian Feminist, I am absolutely disgusted and enraged right now. Love and prayers to everyone impacted by not just what has happened so far but for what we all know is impending.