Oh and I had to see a different OB/GYN than my normal endo specialist and she was the WORST
She actually suggested that my period and ovulation pain that leaves me vomiting and nearly hallucinating might be “normal” for my body.
And then proceeded to lecture me on IUDs for more than half of my appointment after I explicitly stated that I don’t want one and my normal doctor said it’s not a good plan for me (nevermind the fact that IUDs are contradicted by my connective tissue diseas in the first place)
And then she said I have “too much going on” in my body and need to figure even MORE out before I can even be evaluated for endometriosis. And blamed my pain on tethered cord and “nerve pain signals getting misinterpreted.”
I should have walked out, but I was so dissociated I just sat there, frozen, staring at her in complete disbelief
Going to go to a greenhouse this morning for a morale boost
It’s been over a year since I’ve been because I still hold so much grief for my dead collection. I had to unfollow all of my planty tags and groups and subreddits from all of my socials because I’m still devastated.
I lost my entire collection—over 400 plants and tens of thousands of dollars and countless hours invested in their care over multiple years—when my MIL couldn’t keep up her end of the bargain.
I will write about this more, but for now, I am very excited to walk around in some greenhouses with my husband as soon as they open.
[malnutrition, food, medical diet, weight discussion]
My entire body hurts so bad today and I am so exhausted despite having like 10 hours of sleep. My body and nervous system are so overwhelmed from malnutrition on top of my usual complex chronic illness stuff and it is seriously difficult to come out of it. The intense fight or flight response that I’ve been in for months feels never ending and nothing has really been able to calm me down. I was always aware of physical effects of malnutrition, but my level or anxiety is higher than I’ve ever experienced and my dissociation threshold feels nonexistent. And the worst part is knowing that food will help, but if I overdo it I’ll end up in the hospital again with significantly worse symptoms.
I’ve unintentionally lost so much weight over the past few months because I haven’t been able to eat normally and I don’t tolerate my Soylent meal replacement shakes anymore. It’s quite scary watching my body change like it is and that definitely confounds my anxiety. I’m really glad my pcp was able to get me a prescription for a meal replacement shake because I really don’t want a feeding tube and am doing everything that I can to avoid one. I just really miss food and making meals, which is making my medical diet more difficult. (It helps knowing I absolutely can not tolerate the pizza I really want, but it’s just hard restricting myself so much).
And it’s so fucking difficult to actually hydrate myself and stay hydrated even *with* IV hydration. I am really so miserable and in so much pain and so nauseous.
I dislocated my shoulder in august of 2022 and couldn’t relocate it completely until over a month later. I also tore the meniscus in my SC joint, which just added to the fun.
Anyways, my shoulder never healed and has only gotten progressively worse. This shoulder is already my worst joint, but this injury was the tipping point. I’ve been fighting with different “specialists” (and my previous pcp who is a terrible excuse of a money hungry DO) ever since, while also going to physical therapy. My PT is great though, and has been trying to help me get answers and find different specialists.
This morning, I had an appointment with a unicorn—the whole office put on masks when they saw my husband and I were wearing our respirators. (They only had baggy blues, but everyone was wearing them correctly which is more than I can say for the hospital). But I’m so glad I was able to see this doctor. I’m not sure if we can afford treatment with her because of course insurance doesn’t cover it, but I had an actually great experience with her. She listened to me and asked clarifying/follow up questions, she never rushed anything I was trying to explain, she understood I’m hypermobile—immediately upon examining my “good” shoulder, and remarked that it’s weird any doctor has tried to negate that, and she was incredibly thorough with both the physical exam and ultrasound imaging.
I have torn ligaments in my shoulder!!! And at least one is completely nonexistent!!!! In addition to other partial ligament and tendon tears and impinged nerves in my neck, shoulder, and lower in my arm! Who would have ever guessed?? (I told my husband and my pt and my pcp that I thought something was “missing” and joked about betting on something being torn and missed in my mri. They believed me but didn’t know what to do with the info because I have seen at least 4 other providers who all told me I was being a baby and one of them told me I wasn’t hypermobile—that’s a story for another time). She wants more information on my vasculature because I have weird anatomy in my neck apparently (?) but also wants to check for vascular thoracic outlet and eagles syndromes. She’s the first provider (who can actually do something about it) to actually want to get to the bottom of all the damage and figure out what’s coming from my neck vs my shoulder and that made me feel so comforted in my already positive appointment with her.
I’m not really sure what treatment will look like yet but she’s also not sure dextrose injections will be enough. I have this horrible feeling I’m going to need surgery, and I think she was sort of trying to hint at that towards the end of my appointment today. I have a follow up in about a month, so we will see. She is also going to take a look at my bad knee that’s been giving me issues for nearly 10 years. No one has ever looked at it though because it’s a byproduct of a pretty bad injury from when I had to wear a knee-high walking boot for 8 weeks. It was so heavy that it was pulling my entire leg out of my hip socket and caused the same stress on my knee (and likely the rest of my pelvis lmao). Every doctor I saw about it laughed in my face because “that’s not possible.” This doctor made sure we have a full follow up appointment so she can give me a knee assessment too.
I’m really sick of fighting handfuls of terrible doctors and “specialist” for years before finding just one good one. And having to do that for different specialties is an absolute nightmare. I’m really sick of doctors bringing up how I’ve “slipped through the cracks” and still forcing me to slip through them even further. I have had multiple providers tell me that I have a malpractice case with my previous pcp/that horrible DO, and even though I now have definitive proof of damage that has happened as a direct result of his lack of care, I don’t have the resources to even consult with legal council. Which pisses me off to no end because I want this man’s license. (Related, and also unrelated—my pcp also wants this man’s medical license revoked, allegedly, but that’s off the record). I also don’t even know if I could still pursue malpractice because it’s been almost 3 years since I left his practice.
This country’s medical and legal systems are such bullshit.
[CW: medical neglect; medical mismanagement; medical trauma discussion]
My obgyn/endo surgeon has been on leave since the beginning of last year, with no word on when (if?) she'll be returning. (I am assuming she's going to return just based on what the other people in the office have told me, but no one has a timeline). I was supposed to have an exploratory/excision lap plus hysterectomy back at the end of 2023, but we all agreed I was not stable enough for surgery--definitely not for a hysterectomy--and continued to try to manage my symptoms.
In the meantime, I was sent to see a colleague at a different practice, who was absolutely horrible. She gaslit me about my pain saying that maybe I just have really painful periods (!!!! ARE YOU FUCKING KIDDING ME!!!! It's taken me (at the time) 10 years to get a maybe diagnosis of endometriosis from a qualified specialist who was planning on operating on me, and expecting to find endo and maybe adhesions). She was also ignoring my firm boundaries on an IUD and completely disregarding the fact that half of my decision to not have an IUD comes directly from my specialist who agrees it's completely contradicted for my care/QoL and with my history. Every other sentence out of her mouth during my 45-minute appointment were about getting an IUD or trying to convince me to get one and that it would solve all of my problems. She then convinced me I needed a physical exam, but no ultrasound. I should have denied it and left. This appointment was nearly a year ago and I still feel violated.
I've gone back to my original practice and have been seeing one of my specialist's direct colleagues, who I like much better. She finally offered to have me try gabapentin, with hopes it might help another condition I'm dealing with--I had horrible reactions both times I tried my tiny doses. (I felt like a horrible combination of drunk and hungover the next morning, and it ended up making me sick so I was advised not to take it anymore). I had to cancel the follow up I had with her over the summer because I wasn't able to drive myself that day. I wasn't able to reschedule until last week. I was recommended surgery and she was completely comfortable with a hysterectomy. My issue is that I spent the next 10 minutes asking her questions specific to my care (and also pretty in line with what my other surgeon was planning) and felt rushed for the first time with that office. It would have been a little different if this wasn't immediately after recommending me for surgery. Idk, that just put me off. But she was also brushing off my personal medical history and my family history, which was the first red flag. (I find it so infuriating when doctors try to minimize the severity of my conditions/symptoms simply because the only surgery in my history was in 1998 when I was a toddler. Idk if I explained my thoughts on this properly and will probably circle back to it at some point). She was also shocked when I explained that I don't tolerate NSAIDs and can't have tylenol. And got defensive when I said that lidocaine doesn't do shit for me. I even explained to her that I felt everything when I got SI joint injections (which were incredibly painful but my trauma/neurodivergence didn't allow me speak up while I was on the table because I didn't want to be labeled a problem. I was also given an intern but that's also a story for a different rant/vent) and she didn't believe me. Eventually she begrudgingly told me that we could "probably" consult with pain management (great, the people who fucked up my back before getting properly diagnosed with tethered cord). And she still dismissed my very real conerns for vascular compressions because (wait for it) my radiology report didn't note any vascular compressions. Reader, it takes an incredibly skilled radiologist to even know what vascular compressions are let alone how they manifest in CT/MRI particularly when breathing protocols aren't followed. Hell, most doctors will tell you these incredibly real, but not nearly as rare as they're made out to be, conditions don't exist but I digress.
I put feelers out in my local EDS group and they really only confirmed my suspicions that this surgeon does not work with complex patients. The surgeon on leave is known for working with complex patients and patients with CTD, and is incredibly knowledgeable with comorbidities. She is also humble enough to tell me when she didn't know something or needed to consult with other specialists, and I have never questioned her care. She is the only one in my entire state who is an endo excision specialist, and the only one who has extensive experience working with complex patients. We can't afford to go out of state, and we couldn't afford my husband taking time off work to go out of state anyways. And covid. I'm never not going to be worried about traveling, even if we can get there by car. And I know that my tethered cord surgery *has* to be out of state because that's where my surgeon is based, and there's no way we could afford that twice (even in different years).
I am just so angry at upset with this whole situation. And I'm also angry that advil/tylenol is the norm for post-op, and the norm for post removing an entire organ from my body?! Are you fucking kidding me?! My husband got a vasectomy and was given 3 weeks of pain meds automatically. ARE YOU FUCKING KIDDING ME?! I'm not surprised--just filled with rage. I mean, currently my only pain management is weed and the occasional muscle relaxer, but that only goes so far. And after abdominal surgery? How the hell am I going to be able to smoke "comfortably" and without coughing?! (I'm still trying to figure out a budder reecipe but I haven't had the energy oh what a surprise). Just fucking bullshit.
my DID has been DID-ing and i'm still without a therapist because i still can't even search for one without going into an intense panic attack and crashing for the following day and a half. i'm just trying to get our apartment set up (even though it's been nearly 2 years of living here) but there's so much i physically can't do. i just want to clean our space. i want a clean space. i want my space to stop yelling at me. i want my space to feel comfy and safe even though the apartment is neither comfy nor "safe."
i've been angry all day and trying to channel that into cleaning, so i'm expecting to crash pretty hard tonight.
