our stomach issues TW medical from Myra

TW medical and trauma

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Hello everyone,
It’s Myra. 
We’ve had stomach issues since we were about 16. When we lived with our aunt when we were 17, we threw up after a lot of times when we ate. We were under a lot of stress, so I’m not surprised. I’m pretty suffe we’ve been dealing with gastroparesis since we were a child. We also found out that we may have reverse motility issues to, because at 4 hours of our gastric emptying  study, we had 82% ofthe food left in our stomach, but at 3 hours, there was 81% left which says our intestines don’t work as they should. We want to go to Cleveland clinic, but lack the fudding. Does anyone know a way we can do a fundraiser for medical needs? We just want answers!!! We just want some hope. 
I’m tired of feeling sick. thanks for reading.
Myra 

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

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 

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

hopeful update about the appeal

So got an email from Megan yesterday, and it said.. they will be sending a draft of their appeal letter to their supervisor and finalizing it, and then they will send us a copy. God, i hope this appeal goes through and we finally get treatment.. Should know something by Monday or Tuesday if they got the appeal and then the hearing has to be scheduled with the state. That could take a few months, but hope not!! we just need a break!! i hope against all hopes and odds that we will finally get the help we need!! 

Ray

update from insurance company or not?

so our care coordinator called us yesterday to "give us an update" but it wasn’t much of an update. she said they have to contact UIC to see if teh admission is possible. she couldn’t tell me what doctors would be involved, what unit I would be admitted to, how long the admission would be, or what the assessment would entail. Basically, i have no more information now then when we had the meeting on Friday. I’m just beyond frustrated.

Also, my dietitian is saying we need to figure out something for the shourt term for now, but it’s like putting a Band-Aid over the situation. it’s setting us up for failure. I don’t even want to argue with my care coordinator anymore, and if i had my way, we wouldn’t be talking to her anymore. Sorry for the rant.

Ray

Tired of getting my hopes up

Hi everyone,

So I’m tired of getting my hopes up only to have them – to again. I thought I was going to get to go to Renfrew in Chicago for eating disorder treatment. They recommended the residential program, so I assumed that they had that program at the Chicago location. I later looked at their website only to realize they did not have residential at that location. So even if they did do a single case agreement with my insurance, I would not be able to go as the residential location is in another state. I am done reaching out to people to ask for help only to be told that I can’t be helped or to be told by the insurance company that they’re not going to pay for something. I just wish something positive would happen! I don’t want to end up on the medical floor getting a feeding tube because insurance refuses to pay for the treatment that we need!

Ray

Good morning

So, how is everyone doing today? We’re doing ok today. Still feeling suicidal though, but we’ll have to make the best of it. Have to fake it till we make it. All I know is that I can’t keep going like this. We’re continuing to lose weight. Not sure how much longer I can keep doing this. I just feel so alone. I could really use a friend. Just feeling really defeated. I want to cut. I’ve never done that before. T’i always been Amilia. Not sure why I want to do it. Does this mean I’m a failure? I hate myself. I don’t want to live. My mood is all over the place. I hate this. I hope this insurance says yes. I really really hope they do.

Ray

Dark Place

I’m not ok. Dr. Bland took us off all meds. No one will help us. Our team isn’t answering my calls or returning them. I’m not sure what to do. I can’t go to the ER. They send us home even after suicide attempts. They don’t care.

Trigger Warning:

I now weigh 99 pounds. I’m 5 ft. 4. I just can’t do this anymore!!!

Ray