I know this post is really long and i've never posted before, but i'm desperate and don't know what else to do...

Recently I have begun to spiral downhill at an alarming weight. I was in IOP for a while but had to stop going because of school requirements in order to keep my insurance since it is through my university. I though I was doing ok--as far as maintaining--with where I was at. I didn't think I was getting worse. I for some reason honestly thought that tags in my clothes where lying and I was determined that my dietitian was exaggerating the weight loss. I thought it couldn't be more than a couple of pounds. But, at the same time I knew I was pulling my sick clothes out of storage and that even those weren't fitting me. Then I got a very brief separation from my distorted body image when I in a locker room at school changing from my business attire (we had mock interviews) back into my normal clothes. I gasped and almost started balling when I saw myself in the mirror because that wasn't me. I've never let myself great this sick before. I wasn't doing great with being behavior free, but I was doing ok. I knew that physically I had been feeling really bad, especially that day. I had been having palpitations and could barely keep my eyes open. For the past week I was even struggling to stay awake as I was standing and teaching my students. I was practically falling asleep behind the wheel even when it was only a 10 minute drive.

Awkwardly enough I was actually going from the mock interview directly to my dietitian's office for my weekly appointment. I fell asleep in her waiting room and practically fell asleep talking to her. I told her about everything that happened in the locker room and about all of the palpitations and sleepiness that was going on. She weighed me then told me that I had to go to the ER and that it wasn't a suggestion. I told her I didn't want to go and so she said I could go to the walk-in at my primary's office. I went there straight from her office and they did an EKG and labs (they had a note from my dietitian by the time I got there). Then they sent me to the ER with orders to be admitted for monitoring because of EKG changes. The docs at walk-in really listened and cared. They asked questions and encouraged me to talk to them about my fears of drinking fluids and eating a larger amount (more than what I've been doing). They did their best to understand and expressed that they really cared and that it is an extremely severe problem and something they know I can't just snap out of it.

Story short the ER overrode the admit orders gave me 1 bag of fluids and sent me home with directions to eat and hydrate. They also said to follow-up with primary if needed, but it wasn't necessary. They didn't even mention anything about following-up with my cardiologist.


After all of this/at that dietitian appointment I was told that I must go to a higher level of care. My team knew that I was really trying to hold off until after the semester since I was supposed to graduate from my undergrad in May and start grad school in June. She looked me in the eye and told me that at this rate there was no way I would make it to the end of the semester without a major medical crisis.

I started looking for treatment centers, calling to verify insurance and doing in-take assessments. I thought I found a place I was going to go to and admit to early this week. But, then I got a letter in the mail saying I was automatically enrolled in Medicare. Little did I know...that letter has basically been a death sentence...a slap in the face...making me feel that i'm just going to be another statistic. I quickly learned that where I thought I was going to admit would no longer happen because I have medicare. At first I thought it wouldn't matter because it would be a secondary insurance. That treatment center told me they couldn't take me if I had it at all because it causes too many problems, even if it's not the primary insurance.

I then learned that by law my Medicare was actually now my primary insurance and by law I am not allowed to unenroll in the Medicare. Because the Medicare is primary I now can only go to a treatment center that accepts Medicare as a primary insurance. I quickly learned that there are very few treatment centers that will accept patients with the insurance as a primary. So even though I have a primary insurance plan that will pay for 100% of treatment because I met my deductible, I can't access those benefits because I can't find a treatment center with an appropriate level of care that accepts Medicare. The ones I found either only accept the insurance on an outpatient level or the accept it, but wont accept me because of medical instability.

Over the past week I have gone from approaching medical instability to episodes of chest pain, constant muscle cramping (even the muscles in my jaw start to cramp), constant palpitations, blacking out, my hands/feet are dark purple, my lips are purple, I can't get warm, and I get short of breath walking across my apartment. Everything is crashing and burning. My dietitian told me today that my weight is dropping at an alarming rate that is extremely dangerous. She said I need to get to a treatment facility ASAP. She said i'm literally a ticking time-bomb and i'm in danger. She wanted me to go to the ER again today because i've been having chest pain in my left chest, short of breath, I feel like someone is squeezing the left side of my neck and i've been having severe muscle cramping all day. I had an IVIG infusion yesterday, so I think some of the symptoms are in relation to that, but I do know that medically i'm in danger.

I'm afraid I wont wake-up in the morning because my heart is going to stop in my sleep or i'm going to have a heart attack in my sleep. I'm terrified. So, on my way home from her office I decided I was going to call Denver ACUTE and see if I qualified for their program or if they knew of other centers I should contact. I called several times then finally got a hold of someone. I explained what was going on health wise and ACUTE care is definitely where I need to be, but it is the whole Medicare problem all over again. It is a little different there and I may possible be able to go depending on my private insurance. They are checking benefits and everything to see. I really hope that it can be worked out because if I can't go there I don't know what i'm going to do. My dietitian is worried i'm not going to make it to my appointment next week without something happening based off of how drastic my condition has changed since last week.

I'm terrified and scare because I don't want to become another statistic. It's not fair that I was automatically enrolled in a health insurance plan (Medicare) that I didn't even want. And because of it I now can't access my ED treatment benefits that are covered by my other insurance. All because treatment centers don't accept Medicare due to their lack of payment. I want to get help. Things are now to the point that I can't do it on my own in the outpatient setting. But, now I can't get the help even though I have the coverage. I don't see the point in going to the ER because half the time once they hear I have anorexia and restrict both food and fluid they just give a bag of fluid and send me home before all of the labs even come back. Last week when I went I was in and out in 2.5 hours.

Has anyone been through a similar issue or have any advice?