medical TW feeding tube formula issues and dissociation

TW medical and dissociation
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hi everyone,
we are struggling today. we are bloated because of our formula. we’ve been switching like crazy. Time loss and PTSAID is at an all-time-high. We are not dissociating when we are actually out as we started a new med called Neltrexone. It helps with chronic pain and staying more present when each of us is out. we have a chronic ear infection that we have aro be on eardrops for. Just stressed. Our dietitian isn’t listening to us either. She wants us to vent our G-tube three times a day. we don’t want to be on TPN…
Nicole 20

food on my mind ⠞⠙

Hi everyone, I’m really struggling today. I miss food so much today, but I’m dealing with bloating today because of my gastroparesis. I love food, but it doesn’t love me. I just hate this dicotomy… I just want to be normal.

Ray

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

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 

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

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

Yesterday in California!

Yesterday was so much fun!! We walked on the pier, walked on the boardwalk over the ocean by the beach. We got to go to a touch tank where we got to touch a small shark and some other really cool things like see urchins, sea inenimies, some cool shells, a sea snail, and a sea star. I got to hold a crab shell that they pulled up with a net from a hole in the middle of the floor that went down into the ocean.  It was an amazing day!! But something we ate didn’t agree with us. That was interesting. We had so much fun!! So many good memories from here. Today we are going to the beach and to California Pizza Kitchen for lunch.

Ray