dietitian today TW

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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

TW ER and Medical

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So, we couldn’t see our primary care provider until April 2nd, and we suspected we had Thrush. We couldn’t use our local urgent care either as we had to be with that specific medical group with primary care and we are not. Plus, our insurance doesn’t cover that urgent care anyway, so we ended up going to the ER. I know, I know, thrush isn’t considered a life-threatening emergency, but we really didn’t have any other options. We also tried to ask about nutrition, figured it was worth a shot, but the doctor, though sympathetic to our story, couldn’t do anything. She was really nice and listend to us talk, and she had a good bedside manner. We got there at around 7 and waited for about 5 hours before being seen. Needless to say, our joints were screaming by the time we got a room. They apologized for the long wait and said that a lot of people had been coming in sick and that it had been that way for the past month.

I finally got out of there around midnight!! And I tried to call the cab company I usually use, and they didn’t answer at all. I called them 9 times!! And finally security called another company, and it turns out, they were even cheaper than the other one that I used. So it all worked out, and the doctor gave me a prescription liquid medication/mouthwash that I have to swish three times a day. So, all-in-all it was an interesting, but very very long day.

Ray

Got an EGD

So we went to the hospital for an upper endoscopy G.I., and then were admitted for observation for 23 hours. We were supposed to get a CT scan of the abdomen and pelvis with contrast, but insurance denied it first on an outpatient basis, and then when we were admitted to inpatient, they did the same thing saying we need an ultrasound first. The doctors confirmed that an ultrasound would not show what they needed it to show. They need to rule out superior mesenteric artery syndrome. They are pretty sure it is gastroparesis, but a gastric emptying study is needed to confirm this. My anorexia diagnosis was changed to avoidant restrictive food intake disorder ARFID. The nurses and techs were lovely and the doctors were really nice and understanding about my situation. They didn’t even flinch when we told them about the dissociative identity disorder and PTSD diagnoses. This hospital is by far the one that has treated us the best. They were just as frustrated by our insurance as we were. They said that the best bet is to get the gastric emptying study in two weeks. We are already severely underweight, but really nothing to do about that as it is hard for us to eat more than six or seven bites without getting full early, bloating, and feeling nauseous. POTS and Ehlers-Danlos syndrome were confirmed while we were there. I touched my thumb to my forearm on both sides, and the doctor said, “yes, that’s classic Ehlers-Danlos syndrome.” They already suspect gastroparesis. I hate stupid insurance. I hate that insurance dictates the medical care we receive.

Ray

have to be ok TW

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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

BPD no no no!!!

So yesterday in therapy, Lily went ove the diagnostic criteria with us for BPD. She said that even though it’s mild, i still meet criteria. I don’t agree. Maybe I’m not seeing things clearly, but i just don’t see it. I’m not out of control with anger. In fact, usually, I’m not even the one who gets angry. Usually, it’s Enigma or Amilia or someone else who holds that. Lily said that anorexia could be considered impulsive. I don’t ge that, because it’s another disorder entirely. Again, maybe I’m wrong? I just don’t want to have BPD because of the stigma. I’m also confused because before, Lily was saying that i didn’t have it, but now, she’s changed her mind, just because i was in the hospital a few weeks ago for suicidal thoughts. wouldn’t any of you be to if you were going through what we are going through? I’m just confused… Any advice? Lily said she doesn’t even want to work on the BPD because it’s not my main issue. She says my main issues are DID, PTSD, anorexia and depression. She said DID was primary along with anorexia.

Ray

Therapy in a little bit

Hi everyone, We have therapy in like half an hour. Enigma needs to talk to him today about her feeling suicidal. I hope we have a good session. Ray

Been in the hospital and update insurance still not paying for trauma program

Hey everyone,

So we’ve been in the hospital for like 10 days. Insurance was going to stop paying today anyway. We were supposed to have a psychiatrist appointment today, but the appointment got deleted from my caseworkers computer, so she can’t take me. Had to reschedule the appointment, but the next time he was available wasn’t until August 2. So I just got out of inpatient and have to wait until then to see him. While in the hospital, they put us on eating disorder protocol for like two days and then took us off because we were eating 50% of our meals. Was told by a psychiatrist that if I did not learn to control my dissociation I was never going to get better. He is a freaking jerk! My therapist I had there was really nice and was trying to do everything he could to get us to help we need, but the insurance company instantly shut him down when he was asking about the program in Louisiana. They said they had no funding. I find that hard to believe when they just paid for a $30,000 inpatient psych stay. This is so frustrating! I guess we are just going to have to do things on our own from now on. We are trying to meet with a different therapist who works in the same practice as Misty, but not sure how that’s going to work. Meeting with my caseworker today in my apartment. Hoping that goes well. When I got home, I had to straighten my house because my kitty cat made quite a mess while I was gone. He is back to his lovable self, and I woke up this morning to him sleeping beside me on the couch. I have an air mattress, but I’m going to have to buy a new bed because the mattress keeps losing air for some unknown reason. Well in the hospital, the staff were really triggering. They were talking about their diets and their low-calorie foods and drinks. I asked them to stop, and they said, “this is not an eating disorder is unit, you’re just going to have to deal with it. “Overall, a negative experience in the hospital. The doctor and therapist did what they could. We saw three psychiatrists while you are there. Sorry if there any mistakes in this post, I’m using dictation. Tiger just me out to say hi to you all. How is everyone today? I will be posting a YouTube video later with an update.

Ray

Will things ever get better?

Hi everyone,

I don’t even know where to start. This whole trying to get help in reaching out is beyond frustrated because everyone is saying there’s nothing they can do. Insurance is saying I don’t meet criteria, yet I continue to lose weight. The crisis center and other hospitals aren’t excepting us because of the complex medical issues the trauma and the visual impairment. I feel like I am complaining and then I shouldn’t do that. I was told by a very trusted friend that he didn’t believe in SR a. He said it was my reality but that he didn’t believe in it. I don’t even know where I can go for support anymore. The one hospital that will except us we cannot get to because no one is willing to drive us. We are such a burden that no one is willing to drive us 45 minutes to get the help we need actually maybe it is an hour and a half, but still! We just want help, is that too much to ask?

Ray

insurance denied the authorization

So the insurance company has denied the prior authorization for river oaks in Louisiana. They say that there is not enough clinical information in the authorization for them to approve it. I am going to have to ask my psychiatrist to send in an authorization which is another one for them to approve or deny. If they deny this one, then we don’t have anywhere else to turn. We don’t have anywhere to go if we are not feeling safe at his new place is more except us at all. Spoke to my therapist earlier, and she got frustrated with me because our conversation was more than five minutes long. Also tried calling back a few minutes ago to speak with another case manager, and the receptionist said you know they’re busy they have other clients. I just don’t see how these people got their job to begin with with the abrasiveness of their attitudes.

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