trigger warning medical update on us mentions cancer

TW Medical stuff mentions c*ncer. . . . . . . . . . . . . hello everyone,So, we went to what was supposed to be our dietitian appointment and an appointment with a physician assistant yesterday, and it ended up being an adventure. First off, we had the time for the appointment wrong. We thought it was at 2, but it was at 1. Got to love dissociation.So, we called Karen, and she said that her 2:00 patient might not show, so we took this opportunity to see if we could get ,the EKG done that the doctor in Chicago needed done. We got to the cardio floor only to realize that the hospital receptionist had given us ‘the wrong fax number to give our doctor in Chicago, so they never got the order. The person in registration at the hospital called my doctors office and got the order refaxed. We were so grateful to her. So, we got the EKG done, but when we called Karen back, she said she had to reschedule, so we never saw her.We then went to our follow-up appointment, and the ladz was really nice. The nurse we worked with also has two daughters with EDS and is in one of the Facebook groups we are in to!! This was really amazing!! We went to the secood appointment, and Chribbsy as she likes to be called, prescribed us some Omiprizole for acid reflux and some Zofran for We got some of the results of the scope we had done earlier, and we have an irregular Z-line which is caused by acid in the esophagus. The Omiprizole is supposed to help with the acid stuff. TW cancer mentioned. . . . . So we looked up what irregular z-line is, and we found that it can lead to Barrett’s esophagus and then possibly lead to esophageal cancer. This scared us a lot… We have to have repeat EGD’s every three years.
On another note, we were supposed to have therapy two weeks ago, but we had a doctor’s appointment so couldn’t make it.We had another one this past Friday as well, so Lily said she could meet on Saturday, so we were looking forward to that. She then texted us on Saturday to say she had a family engagement and couldn’t meet and asked if owe could meet on Tuesday. We had to say no, that we had a doctor’s appointment, so owe are meeting on Friday. We have our gastric emptying study on Februarz 5th, and hope to get the results back a few days after it. The meds will only be a Band-Aid solution as they won’t speed up the emptning of my stomach. We will see how it goes though. Sorry this is so long. Saphire is still struggling. She’s struggling with and flashbacks feeling so real, and with all this medical stuff going on, Emmie is having a hard time to. Thanks for reading, and sorry if this was triggering.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

TW confusion and dissociation and suicide

TW suicide and confusion and dissociation

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hi my name is Saphire, and i’m 13. ive never been out here before. i’m confused whz i’m here. i dont wanna be here. i hate beinh in so much pain. why does pain have to be real? i feel all spacey and floaty. think there is a little here with me, but not sure. I just hate all the pictures in my head. i dont wanna be here. i dont wanna be alive. i dont wanna be in pain. can someone make it stop? 
Saphire 13

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 

Just want to fix this TW trauma and other stuff

Trigger warning: trauma and medical stuf and just don’t know

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Hi everyone, 
It’s Ray.
I just want to fix everything. I want all this crap to stop!! I don’t want to have all these medical issues, and mental health issues. Trauma sucks!!! I hate being in pain every day. I hate having to do things to just get by. I don’t like that no matter what i do, i can’t force the medical professionals to do anything about all this stuff. And my cat is batting at my  keyboard which is making this that much harder to write. I’m to sick for the mental health system and the medical system doesn’t know what to do with us because of the mental health stuff. I just want to shove all this in a big black box with a lock on it and pretend none of it is happening Ugh, sorry, rant over.
Ray

our new kitty!!

We gots our new kitty! He luvs us!! We luvs him. He be so cute!! He be cudly. He sleepd wif us last night!!! He be so warm!

Amber 5

Leaving today

Waiting to board my plane to leave for Dallas. Really don’t want to leave as we love it here. Wish we could stay here! Don’t want to leave our friend. We’ve made so many wonderful memories. Walks on the beach, touching really cool sea creatures, hanging out with an amazing friend, and just so much more. We really needed this. Thank you to everyone for your support and encouragement. Here’s to a safe trip home and tomorrow, we get to meet our new kitty. 🙂

Ray