TW weight mentionedt
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
So we are going to see our dietitian this morning. We are just hoping she has some advice or anything really because we are down to 89 pounds. We are honestly scared… Don’t want them to force us back into eating disorder treatment as this is a physical medical issue. Eating disorders don’t cause gastroparesis this severe. Hoping for the best and some good news or advice. Hoping she doesn’t just say there is nothing she can do and we have to wait to see the GI doctor on the 20th.
Ray
Spoke to our primary care providers office yesterday trigger warning medical
Trigger warning medical not sure……So, yesterday, we called our primary care providers office and asked her for help. We asked if they could place an NJ tube, but she said that she could not do that. She had said we had to wait for the G.I. consult on March 20. She wants us to drink three protein shakes per day diluted with water to make them easier to swallow as well as eating three full-size meals per day. This is nearly impossible. We can barely manage some days to eat some applesauce and some chicken broth. Why can’t we just get help? I also found out why I haven’t been seeing my dietitian. My primary care provider never sent in a referral to her when I switched providers. So I have not seen her since January 7. I called her and asked her for her advice yesterday, and I asked her if she could prescribe a feeding tube, and she said if it was eating disorder related, maybe. She told me to also wait for the G.I. consult. I am just getting so frustrated at this point. I just need nutrition! Dammit!Ray
Trigger warning medical
TW medical . . . . . . . So, I spoke to Alsana today, and they do not take people with feeding tubes. They said if i got a feeding tube, I would need a higher level of care. I also spoke to Eating Recovery Center, and they said that they do feeding tubes on a short-term basis. So, basically, if I needed a feeding tube long-term because of gastroparesis, no place would accept me. So once again, we don’t fit into a box of criteria. So why even try to get into treatment? Also, Medicaid is coming up with a list of places they believe will meet my needs, and they are giving that to Meridian next week, so we don’t even get a choice in the places they choose. Everything just feels out of my control!!! Eating disorder programs don’t understand chronic illness, and I was even told by Alsana that in eating disorder treatment programs, you have to eat food, and if I went there, they would need a menu of foods from my GI team that I could eat, because i couldn’t have a tube during programming. The thing is, I can’t take the only motility med they prescribe which is Reglin. She also said that people on feeding tubes are just existing, not living. I’m half tempted to ask Megan to stop pursuing the eating disorder treatment. Ray
Trigger warning weight and food and medical our psych appointment
Trigger warning
.
.
.
.
.
.
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…
t
t
t
t
t
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
to eating disorder clinics — our latest video
Here is our latest video. The trend of poor people going without treatment needs to change!!!!
Ray
from Lilianna food TW
Trigger warning: foodt
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
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
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
t
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
t
t
t
t
tt
t
t
t
t
t
t
t
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
