FROM MYRA TW FOOD

TW FOOD

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HI, IT’S MYRA. I WISH I COULD EAT SOLID FOOD. I MISS IT SO MUCH. I MISS CHOCOLATE AND CHIPS AND ICE CREAM. IT JUST MAKES US SO SICK TO EAT IT. IT’S NOT FAIR. WHY DOES OUR BODY HAVE TO DO THIS TO US? WHY CAN’T WE JUST BE NORMAL? WHY DOES IT HAVE TO BE SO SO HARD? I’M STRUGGLING TO SEE HOW OUR BODY DOING THIS IS NOT LIKE THE TRAUMA WE WENT THROUGH. MY HEART HURTS FOR EMMIE AND HER PARTS TO. THEY ARE STRUGGLING SO MUCH WITH ALL OF THIS. DOES ANYONE HAVE ANY ADVICE?

MYRA

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

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

an email i sent Lily

Hi Lily,

ive been out all day for the most part except for when the other people were here. Jennifer and Ashley were their names i think. Ray got upset and we had to go to our room as i came out and didn’t want to be found out. we are made as to not be noticed. i know we need help, but they’re not doing anything. if we don’t get help, i fear we will die… sad, but true… we are so very very tired.

Katie 16

So so much *tw*

Hi everybody.

This is all to much. I dont wanna die!! We are really underweight. I want help, but no one will help us!! Feels like we have no control!! I dont like not having control!!! I dont know what to do. I just… dont know!! Just want to block everything out!!! Just so much anxiety!! So much pain… just so sad… so so sad.. just so tired… want the dreams to stop… just want it all to stop!!!
Emmie 12