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
Just another tool in my toolbox against gastroparesis
Hello everyone,
So, we got our permanent tube placed! Yay!!! It’s a GJ tube. Still healing from the proceedure. Gastroparesis sucks, but it won’t ruin me. I now have another tool in my toolbox to make my life easier to live. #tubieLife
Thought I would share this!!
via Hallowed Ground
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
I hate gastroparesis
Hello everyone,
I hate gastroparesis. It’s a monster of a disease. It steals quality-of-life, and so much more. I just want to be able to eat normally.. that’s all i want. this is a chronic condition, and will never go away. Does anyone have any encouragement? I will be getting a feeding tube soon. I can’t imagine being hooked up to tubing, and not having accessible feeding pumps. This will be an adjustment.
Ray
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
please donate for a much needed device!!!
Hi everyone,
so I’m trying to get a new device called the BrailleNote Touch Plus. It’s a Braille tablet that will help me with productivity and keeping up my Braille skills. It also would be easier for me to type on because it uses a touch screen. It would be way easier on my joints. I know it is expensive, but I really need it to keep and maintain as much independence as possible. Even if you can’t donate, I wod appreciate it if you could share the link. Thanks.
https://paypal.me/rayetter/
Thank you.
Ray
things i can do with my joints because of EDS
Is recovery worth it?
This is the question that I’m wondering today. It’s the question that’s swirling around in my mind as I sit and think about all of the obstacles that are stacked against us. The doctors who say we need treatment but who are not willing to fight the insurance company. All these treatment facilities that we call that say they cannot take us because we have Medicaid. And this is the question that remains in my mind. Is recovery really worth it? I feel like it’s a losing battle as my doctor told me the other day. He said this was going to be a losing battle at best. Could really use some encouragement and or support. Any feedback is welcome negative or positive. I just need a jumpstart to continue this process a recovery because right now I really want to give up.
Ray
