Gastroparesis tribute

Hello everyone,

So, on April 1, Amy Lee Fisher, a well-known YouTube or and chronic illness warrior/advocate passed away due to the complications of her conditions. Amy suffered with Gastro paresis, POTS, Ehlers Danlos syndrome, hypokalemic periodic paralysis, and she was TPN dependent due to her G.I. tract failure.

 

Amy will be greatly missed in the community, and her death has greatly affected me. She will always be remembered as the first person who’s videos I watched when I got my first feeding tube. She is the one who taught me to put on makeup with my nasal tube. She will always be out, and her legacy will always live on.

Flare-up

Having a flare-up of my conditions. My heart rate went from 88 to 120 within 10 seconds of standing. I’ve also had a flare of my gastroparesis. I had some chipss and some coffee yesterday at like 11:jj AM, and at 7:jj PM I was feeling nauseous, and so I vented my stomach, and it all came back, undigested. My joints are also sublaxing because of my EDS. Flares are no fun. Hope everyone is doing ok. Thanks for reading.

why I have a GJ tube

Why do i have a GJ tube?

I have a stomach condition called gastroparesis. It means partial or total stomach paralysis. I use the J portion to feed and the G part to vent/drain stomach contents that build up. My tube allows me to still enjoy some things orally. So, I can have small amounts of mashed potatoes, Jel-O, soda, breads, or small amounts of ice cream. Dairy is debatable with GP though as some people cannot tolerate it. On good days, I can have small amounts of grilled chicken and if I have any vegetables, they have to be cooked to almost mush. No raw fruits or vegetables because of the fiber content. I love my tube, and without it, I  wouldn’t be alive.

Ray

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

more good news!!!!

Hi everyone,So, we skipped therapy today because of exhaustion. 
We are getting our supplies delivered tomorrow I think for the IV fluids. Yay!! So excited!!! Can’t wait. How is everyohe?
Ray

alergic to another dressing

Hello everyone,

So, I went on Tuesday to get my IV fluids infusion. Well, we are alergic to the huge tegaderm dressing they used. apparently, they didn’t use the right dressing. So, yesterday, we went to get tthem again, and they changed the dressing. So thankful they did that. My skin feels a lot better. Thank goodness!!!

Ray

IV fluids and POTS

So, I had my appointment with the PA at our POTS doctor’s office yesterday through telehealth. She spoke to my doctor, and they are going to give me IV fluids every other day for 8 weeks. Trying to decide if I should leave my port accessed during the week to lower the risk of infection from being accessed and deaccessed multiple times a week. I’m just confused as to why he would say I can have IV fluids every other day for 8 weeks, and then take it away if it’s working? I’m completely NPO in terms of fluids because whatever I do drink or eat is drainable and doesn’t digest anyway. I’m glad I’m getting more fluids, but why do they have to give it to me and then take it away? I’m feeding tube dependent. I have gastroparesis as well. Sorry for venting…

Ray

Rayette Rucker

World Services for the Blind

Assistive Technology Instructor Online Trainee

Google Voice Number: 3146379985

JAWS 2020 certified

chronic illness flare

Nausea… Go away!!! I just want sleep!!! Having a GP and POTS and EDS flare!!! What do you do for breakthrough nausea? Already took my orally decentigrating tablet, and can’t take another one for 5 more hours!! My BP is 88/48 and when I stand, my HR goes from 79 to 128. Ugh!!! How do you get your docs to give you IV Zofran? Ray