u/lujo317

do you ever wake up from a wistful long-form adventure where you're having a torrid love affair with someone you've never met before in the waking world, but who felt so vivid and real? i know this is nuts but sometimes i wish it was possible for there to be a dream-based missed connections forum. Max, blondie with the white parachute pants, gold puffer jacket, and matching enormous gold feather earrings, if you're out there, hit my line.

tell me about your long lost liminal loves in the comments so we can comisserate. maybe it's a little solipsistic to think this hard about, but i think there is something charming and endlessly fascinating about the love our brains can generate apropos of nothing

CW - barriers to care
tl;dr - rant about lack of success navigating the constraints of health business models as a complex multisystemic autoimmune patient

I'm in the US and I keep having this experience, no matter how nice and reasonable I am, no matter how much administrative labor I try to save them, that as soon as I exceed a certain threshold of labor, clinics seek to fire me as a patient. The effect is that I keep getting told I need a higher level of care than they can provide, but they're also not actually obligated to help me access a higher level of care, because it doesn't even exist.

All they have to do is discharge me, provide 30 more days of refills and emergency followup, and that's it, they can leave me legally dangling in the wind. Technically medicaid can assign new PCPs, so that's how they get away with not finding me a different doctor, but there aren't any that exist who coordinate high level complex care and have availability for new patients. There's basically just the county health clinics that take months to get an appointment at. Even if I point out that they are actively contributing to worse health outcomes, well, I don't point that out anymore because it just makes them madder. I am guessing they feel like shit about having to do this to people and don't like being reminded of the shame. The system abhors those who have the language to elucidate its flaws, or rather, its engineered shortcomings.

So providers keep getting to fire me even though all that does is make more work for the next guy who's just going to fire me too the moment I ask for anything that is considered not routine or takes more than one reply to a phone note in my chart to resolve. Guys, I have a rare autoinflammatory disorder on top of a connective tissue disease and a mountain of unmet care needs stacked up from years of, well, doing this dance. None of me is "routine". The stack of stuff just keeps getting higher. And it's not like I don't try to help with it. I've spent hundreds of hours on my own medical admin. It doesn't help. Often it seems to make it worse that I'm someone who works in healthcare and who has some clinical and procedural understanding. I definitely wouldn't have gotten this far without that though. I have to advocate for myself because I would have already died if I had just given up and accepted nothing.

Anyway, on top of seeking commiseration and validation, I guess I am here to ask. Does anyone live in a medicaid expanded state and receive TNF blockers that are covered? Now that I finally got my clinical diagnosis I have to seriously consider if it may be worth it moving elsewhere where I will probably face all of the same issues but at least would have a fresh batch of providers to work through. And again like it doesn't seem to matter who I am or how nicely I go about it, this seems to just be the natural consequence of the healthcare business model and rationing of care. But it's screwing my ability to actually get what care is clinically indicated and I am tired of feeling like a worthless piece of crap because of it. I believe even the worst guy anyone could think of deserves access to care that is clinically indicated. These respectability politics are literally killing me. It is exhausting to be going through these illnesses period, but to have also lost all your social infrastructure and then every doctor you see makes it pretty plain that the system is engineered for you to preferably just go away and die, that doesn't help much either. What are we even supposed to do, if not just that? Was I supposed to pretend to not understand my differential, content myself with the first misdiagnosis, and let that do me in? How long are they gonna punish me for making it this far?

I am here to ask about the process of ruling out or confirming vascular compressions because it seems impossible and I'm so tired. I have had 8 rounds of imaging so far to try and rule out the presence of the vascular compressions that can occur comorbidly with EDS. I am diagnosed with hEDS and I also have Behcets disease. I'm located in OR.

I have access to providers who are reasonably knowledgeable and affirming and we have arrived in the neighborhood of reasonable neurovascular concerns years ago. But we cannot manage to get proper diagnostics done. Only 3 of 8 of the scans I've had were even the right kind (vascular ultrasound and CT angio) but even when the scan got ordered and performed correctly, the radiologists don't actually check for any of the measurements or angles or velocities or ratios that would be diagnostic for these conditions because they're not considered routine.

I think my providers would have to specifically list the requested items on the orders themselves but I haven't been able to get them to do that. Other area hospital systems would tell me at the last second that they only have a MALS protocol and none of the other ones. Even when my EDS trained provider sent orders to the specialty radiology place where she sent patients for this all the time, they protocol changed me at the last minute and did a CT abd pelv with oral and IV contrast instead of an angio, for some reason, then the radiologist retired and they never were able to redo it for me.

I just had a CT angio come back normal from the University hospital and am gearing up to ask my rheumatologist to request an addendum with the relevant items. I think he just put my diagnoses on the order and said something about vascular ruleout but apparently not specific enough. I know fully well from also working in imaging that how something gets ordered affects what gets looked for, but even with my epistemic privilege and generally knowing what needs to happen, I haven't been able to make it happen.

Even if I truly don't have any compressions and need to look for other answers, why is it impossible to get a piece of paper that says these specific measurements are normal or not? I guess I am just looking for reassurance and if you've been in a similar boat if you could let me know which castle the key ended up being in for you. It shakes my faith in the entire area of diagnostic studies because if all my diagnostics are only ever looking for what is "routine" and it's like pulling teeth to get them to actually check for what's clinically indicated then I am almost guaranteed to fall further through the cracks than I have already.

[removed]

looking to connect socially with other local immunocompromised/complex chronic illness folks. i no longer use meta so i lost access to the patient resource and stillcoviding groups i had on there. mask4mask and so on and so forth. it is hard enough to make friends in portland, it's even harder when it feels like most people only want to make new friends with people whose lives aren't very difficult or complicated. i need to meet people who like, already understand how to have grace for disenfranchisement. not trying to disparage portlanders or anything, but most average people don't get how hard i have been fighting for my life the past few years or in what highly specific ways, without a whooooole lot of explaining, and what doesn't kill you definitely makes you weird at parties. hoping to reverse the course of my slow alienation from normal society and be pointed towards such a group, or connect with a few folks who would be interested in meeting somewhere with outdoor seating sometime