TW medical and trauma
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,
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!!
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