trigger warning: medical stuff and still more waiting

Trigger warning: medical stuff and eating disordert
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So today, we saw a different nurse practitioner as our primary care doctor is on vacation until Monday. We don’t know what we are going to do from now on because my primary care provider was seeing me once a month until the residential treatment got approved, so now I guess they are going to talk and figure it out. I also think the nurse practitioner is going to refer me to a geneticist to get tested for Ehlers-Danlos syndrome but she believes I most likely have. I also have to see the ENT again because we have ear infections in both ears. This is not good as ear infections in the past have caused our eardrum to rupture which the left one already is. We are very fatigued and in a lot of pain both because of EDS and body memories. I hope my team can figure something out. I’m hoping that I can go to the geneticist and maybe get some answers. They might need an echocardiogram before they can get it approved, but not sure yet. Think we are going to go to sleep for a while, and hopefully when we wake up, we will be in less pain. Doesn’t help that we are on our period.
Ray

Is it ok?

What more can we do to get the treatment we need? What more can we do that we haven’t already done? Is it ok that we’re struggling with food and stuff and trauma right now? Is it ok or understandable that we aren’t making a lot of progress? Just feeling so defeated…
Ray

from Dana TW food

TW food

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hi im Dana. i dont like food in the tummy. i dont like to be full. i get flashbacks of the bad stuff when im full. i dont like it. i feel like im back there again…. i dont even want to think about it.

Dana 11

Trigger warning eating disorder late night thoughts

Trigger warning: eating disorder tttttHello everyone,So just having some late night thoughts. Just thinking about treatment, and how it’s not even been a month yet, and we’re already struggling and almost back to pre-inpatient weight. I feel like a failure.. i know recovery is not leniar, but i still feel like i should have been able to keep things together longer than 3 weeks. i just feel like i didn’t try hard enough. i feel like i’m failing at recovery. this is just so hard. if we have to go back to inpatient, none of our issues will be addressed and we will end up in this same situation when we get back home. I’m just getting tired of this cycle. i just want to recover!!! Ugh!!! i hate anorexia. we’ve had it for 19 years!!! They say recovery is harder after 7 years of the illness. Why do things have to be so hard??Ray

Home from inpatient

We are home from inpatient. We are already struggling. Some others inside are already using behaviors. We contacted a residential treatment center who has worked with our insurance before, and when we told them that we were discharged straight back to outpatient with no one who specializes in eating disorders, they were completely flabbergasted. They said we never should’ve skipped three levels of care. We are going to be seeing a therapist who specializes in eating disorders online. We will take anything we can get at this point, because even she says we are still any vulnerable. With our health. We were only there for 2 1/2 weeks. We made a lot of art pieces while we were there. We liked the art therapy and the dance movement therapy, but we were not allowed to talk about why we were struggling with meals because it was trauma related. We were not allowed to be ourselves there. I guess we did get some benefits from it, but somethings obviously not right since we are still struggling.

Ray

Linden Oaks excepted

Linden Oaks excepted us! We are waiting on my insurance to hopefully do a single case agreement. We are still hoping this actually works. It is the only facility in our state that has excepted us.

Ray

JUST MY THOUGHTS

HI EVERYBODY,

IT’S AMILIA. I WISH I COULD SPEAK, BUT I CAN’T. I’M LISTENING OT A SONG CALLED SPEECHLESS. IT TALKS ABOUT NOT BEING SPEECHLESS ABOUT THINGS WE’VE BEEN THROUGH. I WANT TO BE ABLE TO TELL MY STORY SOME DAY I MEAN ACTUALLY SPEAK IT. I WANT TO BE ABLE TO HELP OTHER TEENS IN MY SITUATION WHETHER THEY BE INSIDERS IN OTHER’S SYSTEMS OR OTHER OUTSIDE TEENS. I’M 16 BUT FEEL MUCH OLDER THAN MY SIXTEEN YEARS. I’M JUST SADDENED THAT WE CAN’T GET THE HELP WE NEED AND MAYBE NEVER WILL. WWE WANT HELP, BUT CAN’T GET IT. IT’S SAD.

AMILIA

from emmie TW eating disorder

trigger warning: eating disorder

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not eating makes me feel safe. i dont know why but it does. We were only allowed to have a certain number of calories growing up and now i freak out when we go over that amount, it’s like its a PTSD trigger… not sure if this makes sense.

i dont eat so i dont remember. i know the others eat but then i feel guilty cause i use laxatives… i feel like such a failure. i just wanna do things 12 year olds do. Why? Why me?

Emmie

I hate insurance!

So, we still have no updates from our insurance company. They want us to do an assessment at an ophthalmologist in St. Louis which is like three hours away. So it’s going to be three hours there in three hours back just for them to say that we are blind and that is not changing. Six hours for that? It’s ridiculous! We also found out that they still have not found a psychiatrist to do the insurance companies assessment of things as they put it. They said the psychiatrist were based on availability. By the time they get the assessment set up, it could be too late. This is just ridiculous! We want treatment!

Ray

Update on how we are doing trigger warning talk of eating disorder

Trigger warning

So, we went to our dietitian appointment today, and our dietitian has said she is cutting our appointments to half an hour instead of a whole hour because there is nothing she can really do because our eating disorder is so ingrained. We were in the car earlier with one of the drivers from our insurance company, and she asked me why I needed a dietitian because I am not very big. I then told her I was anorexic, and she said she wished she was anorexic. I’ve been told her that anorexia is not a lifestyle choice. I don’t think she realized the implications of her comment, but she still shouldn’t have said anything. We still have no updates from the insurance company, and I am refusing to call my care coordinator anymore because every time I call her she has no new information. So we are playing the hurry up and wait game. It’s very frustrating. We are doing the best we can with what we have. We thank all of you for your ongoing and continued support love and patience.
Ray