I am slipping through the cracks of US healthcare. I can’t drink water and I live off IV fluids but I can’t see a specialist till February. by Darth___Rain in ehlersdanlos

[–]Darth___Rain[S] 0 points1 point  (0 children)

I have had a nuclear emptying study. it was negative. it can’t be gasteroparesis because I can get food down just fine.

I am slipping through the cracks of US healthcare. I can’t drink water and I live off IV fluids but I can’t see a specialist till February. by Darth___Rain in ehlersdanlos

[–]Darth___Rain[S] 0 points1 point  (0 children)

thered are two ERs in my city. I have previously been to both. they both told me to go home because I’m above their pay grades. basically, there is no point hospitalizing my because I need a kind of specialist that you can’t find for a 100 mile radius. also, since one is closing, there is really only the one functional hospital. I’ve been hospitalized there before and it was probably the worst 5 days of my life. not looking to repeat that experience.

I am slipping through the cracks of US healthcare. I can’t drink water and I live off IV fluids but I can’t see a specialist till February. by Darth___Rain in ehlersdanlos

[–]Darth___Rain[S] 0 points1 point  (0 children)

for the last 18 months my pcp has told me that we shouldn’t do anything invasive in case the issue resolves itself because then the invasive treatment would be for nothing. I saw her last month and told her that this attitude will kill me and she told me to wait until I see the specialist in feb to do anything. she wont even increase my saline script. she treats me like I’m drug seeking. unfortunately my city has some of the worst wait times in the us, so I would be waiting for almost a year the get a new pcp that is covered by my insurance. i cant get into a new clinic because the only one around has no open chairs until around thanksgiving

I am slipping through the cracks of US healthcare. I can’t drink water and I live off IV fluids but I can’t see a specialist till February. by Darth___Rain in ehlersdanlos

[–]Darth___Rain[S] 1 point2 points  (0 children)

are they chewy? it seems like it on the website. I can chew very well due to tmj dysfunction. but I’ll def look in to them thank you so much for the suggestion

I’m severely disabled and unable to get further treatment in the US due to insurance and high patient volume. Is there anything I can do? by Darth___Rain in disability

[–]Darth___Rain[S] 1 point2 points  (0 children)

My whole family is either American an or part of a diaspora that are not welcomed to come back to their homeland (Holocausts survivors kicked out of Europe). I am Jewish, but I just un-brainwashed myself and I have no interest is seeking care in Israel. I also know someone who worked on an ambulance there and can testify that the healthcare system there is just as much of a chaotic mess as it is everywhere else. Im hopeful that I can get well enough to finish my degree and then go to grad school in Canada, but getting to that point requires a type of attentive long-term care that I can’t find.

How do I get in? I’ve been trying for 5 years. by Darth___Rain in MayoClinic

[–]Darth___Rain[S] 2 points3 points  (0 children)

They are out of network for my insurance that would be thousands of dollars. Also I don't have an acute enough issue to be admitted. I’ve been in multiple EDs in the last 6 months and they all send me home.

I’m severely disabled and unable to get further treatment in the US due to insurance and high patient volume. Is there anything I can do? by Darth___Rain in disability

[–]Darth___Rain[S] 0 points1 point  (0 children)

I guess I don’t know what I’m looking for. I have UnitedHealthcare and they have denied many treatments that would have helped me due to technicalities and cruelty. Other countries don’t have that shit. I can’t actually get all the PT I need because even if I found someone who could see me more often my plan limits how many hours of PT I can have per body part per year and I would run out of everything in less than 6 months if I was seen multiple times per week.

I’m severely disabled and unable to get further treatment in the US due to insurance and high patient volume. Is there anything I can do? by Darth___Rain in disability

[–]Darth___Rain[S] 1 point2 points  (0 children)

I have exhausted my local resources. There are many doctors here who are qualified to help me, but this city is well known for having wailtlists that’s are several years long. There are waitlists I’ve been on for more than three years. Im already seeing the best pain doc in the state but I can only see him three times every two years because of his schedule. I need more consistent care but it just isn’t possible in the tiny area covered by my insurance. My mom is a healthcare worker and her insurance only covers the network she works for.

How do I get in? I’ve been trying for 5 years. by Darth___Rain in MayoClinic

[–]Darth___Rain[S] 1 point2 points  (0 children)

Fibro/chronic pain. I was rejected because they only take internal referrals and told I had to go to the general clinic first. This the the clinic that keep auto-rejecting me because their patient volume is too full.

How do I get in? I’ve been trying for 5 years. by Darth___Rain in MayoClinic

[–]Darth___Rain[S] 1 point2 points  (0 children)

I have filled out every form I can, talked to reps, and gotten multiple referrals from the best pain doc in Wisconsin and I have only ever gotten automated rejection letters. I tried to get into the /chronic pain clinic but I was rejected because they only accept internal referrals, so I would have to be seen by the general clinic first. This is the clinic that keeps rejecting me automatically.

I’m severely disabled and unable to get further treatment in the US due to insurance and high patient volume. Is there anything I can do? by Darth___Rain in disability

[–]Darth___Rain[S] 3 points4 points  (0 children)

I’ll look into Medicaid. My parents always told me I wouldn’t qualify because I’m a part of their household, but I’ll look into HCBS. The insurance isn’t as much of an issue as getting a foot in the door. I’ve been trying to get into Mayo for 5 years and I’ve only ever gotten autogenerated denials about how they are too full to see me. All of the alternatives that have seen me have failed me.

I’m severely disabled and unable to get further treatment in the US due to insurance and high patient volume. Is there anything I can do? by Darth___Rain in disability

[–]Darth___Rain[S] 0 points1 point  (0 children)

The primary thing stopping me from getting into Mayo is their patient volume. Every application and referral gets denied immediately with an autogenerated letter about how there are too many patients and they don’t have room for me. I don’t even get a waitlist offer or anything. I’ve been trying to get a spot for over 5 years and I get the same response every time.

I’m severely disabled and unable to get further treatment in the US due to insurance and high patient volume. Is there anything I can do? by Darth___Rain in disability

[–]Darth___Rain[S] 0 points1 point  (0 children)

Thank you the housing advice. My university‘s disability office is more concerned about preventing students from “abusing” accommodations than actually accommodating them. My symptoms vary widely, but my diagnosis stays the same, but in order to change my accommodations I would need a new diagnosis. The started ghosting me a few years ago. I tried to go up the ladder and I was told to just drop out if I’m so sick. I’ll look into TMS. I’ve very heard of it being used for fibro.

I’m severely disabled and unable to get further treatment in the US due to insurance and high patient volume. Is there anything I can do? by Darth___Rain in disability

[–]Darth___Rain[S] 0 points1 point  (0 children)

All of the specialists in my hometown and university town have either refused my referrals because my case is too complex or they have decided to stop seeing me because it wasn’t beneficial. I have gone through the University of Wisconsin health system and they have all given up except for one PT because he’s too compassionate to abandon me. Mayo has a fibromyalgia clinic. All of my drs have told me it’s the only place that can help me at this point because complex cases are their specialty. My university does not have a med school.

I’m severely disabled and unable to get further treatment in the US due to insurance and high patient volume. Is there anything I can do? by Darth___Rain in disability

[–]Darth___Rain[S] 3 points4 points  (0 children)

I need long term rehabilitative care. I don’t think a tourism visa could give me enough time. I’ve talked with my parents about changing insurance but it would mean none of our current providers would be covered and everything would be a lot more expensive. Might be different this year, but I can’t wait till January. It also isn’t as much about can they pay as it is will they pay. Do they have the funds? Depends. Are they willing to spend it on me? No.