Trigger warning weight and food and medical our psych appointment

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So, yesterday, we had our psychiatrist nurse practitioner appointment. We were talking to her and discussing our situation. We told her there were no more medications they could try for motility issues. She said it is super frustrating to feel like you’re not even in control of your own body. I told her that yes this is exactly how we all felt. I told her we wished they would just put in a feeding tube already because we are so exhausted from all of this. Even drinking water makes us feel nauseous. We don’t really know what to do. We are already down to 92 pounds, and our dietitian said that if we got below 90 we would have to go back to inpatient for eating disorders. None of the other people on our team is recommending that. They said that with the other medical issues we have going on that if we had to go into a psych hospital, it would have to be one with medical facilities attached, and we don’t have many of those. None they will except us anyway. We are trying our best and doing what we can, but we don’t know if it will be enough. Our gastric emptying study isn’t until February 5.
Ray

caseworker leaving TW maybe? food

TW just in case food…

Hi everyone,
So our caseworker Sarah is leaving her job. She is going to be a care-coordinator for Meridian. This makes us very very sad. We will miss her. We also got hooked up with another person from Healthy Jacksonville. They’re going to try and get us a nurse during the afternoon to monitor our vitals, but there was a big emphasis on meals. The lady asked me how much weight i needed to gain, and then proceeded to talk about BMI, and I told her that BMI was aload of crap. I told her it didn’t determine a person’s health. I guess now they’re going to motitor how much we’re eating… They don’t understand that there are other physical issues going on besides the eating disorder. This is all so complicated. 
Ray 

email to Lily

Hi Lily,

We want to do therapy the right way. But is there really a “right” way to do therapy? We want to heal, but we also don’t want to put ourselves in an even worse place. we know we are not at the right level of care. I mean, an ED therapist couldn’t even work with us because we need a higher level of care. We don’t want to do things the wrong way, but is right now the right time to be processing trauma? I can barely think to even get this out on paper to try and explain some of our fears. We have no crisis plan if something were to go wrong. No matter which way you look at it, there is no place that will take us because we are to much of a liability. We just want to heal, but it seems the medical system and healthcare system is totally against us!!! Sorry for ranting..
Ray 

from Lilianna food TW

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hi everyone, i hate food, it causes me so much pain. i hate it i hate it. i hate being in so much pain physically. i hate our achy joints. i feel like my body is punnishing me for doing what im supposed to, which is eat. ugh!!!
Lilianna

eating issues and medical stuff TW

Trigger warning: eating and digestive issues and chronic pain and medical stufft
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Hello everyone,
so we are really struggling with eating because of pain from eating because the food just sits there and doesn’t move for a while. Also been struggling with heart rate and blood pressure issues. I do think this is related to EDS (Ehlers’ Danlos Syndrome). All alters as far as i know have agreed to try with eating, but the physical stuff is making it really hard. We haven’t used laxatives in a few months which is good, but now we are finding it hard to even try a lot with eating because of the physical pain. The fatigue is a lot to handle. Heart rate the other day went from 82 to 132 from laying to standing. I do understand that there are mental health things going on, but there are also physical things going on as well which complicate the mental health stuff. I don’t even know where i was going with all this, except to say that we are very frustrated. The Reglin isn’t working anymore either. Ugh!! Blood pressure was 89/46 the other morning. Our new worker is recovering from anorexia, and she doesn’t understand all the physical stuff we have going on, so when she asks us if we’re hungry, and we say no, she thinks it’s because of the eating disorder, but it’ really because we know how much pain eating causes us. I wanted to be honest about this with people and hope you understand that there is more to this eating issue than just an eating disorder. We’re just really complex patients. Hoping the new PCP can help figure some of this out. She is referring us for genetic testing. I’m just at a complete loss.
Ray

Hi from Brianna

Trigger warning: anorexia and trauma

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Hi its Brianna. i am one in the system who struggles with anorexia. i hate food. i hate gaining weight. i don’t want to be bigger. eating brings back memories for me. i went without food for a few days and weeks at a time when we were younger. when the body was 15, i was the one who dealt with food. i got in trouble for going to events and eating “to much” for my grandparents’ approval. we were at church, which is another trigger for some of us, and if we ate a brownie that was to big, we got beat when we got home. so, yeah, food is not in a good mindset for me. 

Oh, and did i mention treatment centers that encourage restriction? Yeah, when we were at Linden Oaks, we were told that we couldn’t have a brownie because it went over by two exchanges for our meal plan, instead of one. I don’t understand why treatment centers who want people with anorexia to eat more are encouraging people to restrict. that annoys me to no end!! Rant over. Thanks for reading.

Brianna

from Emmie TW eating issues

TW eating issues

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Hi its Emmie. I hate food. I hate eating. I hate what it does to my body. I hate the memories of the stuff that was done to me. I want the body to look like me, like a 12-year-old. I don’t want to lose weight to be thin, I want the memories to stop. I don’t think I deserve food. What was done to me, hurts… like crazy… the memories are a lot. Ugh!! Do people get this? It’s not an eating disorder, it’s a trauma symptom. Maybe im overthinking this.

Emmie

HFS final ruling

So, HFS issued its final ruling and we received the 20 page letter today. They said that the insurance company did not have to pay for the treatment we needed and our request was denied. They also said that it did not find that what we were requesting was within their jurisdiction. They said it was more a grievance that we were saying that our insurance would not find an alternative treatment plan. So now, we have to first try appealing to the circuit clerk court in Morgan County, and if that doesn’t work, we take it to the district court, and then, if that doesn’t work, we go to the supreme court. So we are looking at another year maybe more before we can get the treatment we need. For now, we are focusing on school. We are getting a new Windows laptop from the Illinois assistive technology program next Wednesday we have no choice but to keep going. We are not going to give up even though some days that is what we want to do. We will fight as hard as we can. They won’t take us down without a fight!

Ray

have to be ok TW

trigger talk of suicidet
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i have to be ok for Ray. I see what she writes on the lists and to our therapist. She is not ok, so i have to be ok for her. i have to be strong for her. i have to keep it together for her. how long can i do that? how long can we pretend everything is ok? how long before i break? others have to help me because there’s only so much i can do. i’m doing the best i can do for us all. maybe it’s not enough. i don’t know. i’m trying, but will it be enough. how much more can i give before i have nothing left to give? it’s like the insurance is sucking any resolve we have out of all of us. or do we just pretend everything is ok and move on with life because we are never going to get the treatment we need? do we just accetp that? we feel so stuck and alone, and sad, and depressed, and distressed, and anxious. hospitals don’t believe us. they only see Ray. sorry this is so long. 
Tabitha