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.

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

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

medical frustrations with fluids

So, I have POTS and gastroparesis and EDS. I have a port. My POTS doctor is only willing to give me 2 L a week of IV fluids for three weeks. I’m tube dependent as well. I also take Lenzess and so lose fluids there as well. If I didn’t take it though, I would be constipated. I went to my urogynocology doctor for pelvic floor biofeedback therapy, and my urine was a dark yellow color. So, I’m dehydrated. I can’t get more fluids through my tube than I’m already getting. He will not recommend any more fluids than what he is going to give me. I’m completely lost, because I keep telling him that I only get 1228 MG of sodium through my formula a day. I can’t mix salt or add anything else to my feeds because It can mess with how the formula is absorbed in the small intestines. If I don’t get more fluids after the three weeks, I will keep ending up in the hospital for dehydration. So, what’s the point of me having this port then? I’m just at a loss. Any advice? The POTS doctor is saying that hopefully my body will adjust. They are also leaving it to my GI doctors to manage the nutrition and hydration stuff, but the GI doctors don’t specialize in POTS… ugh!!!

Ray

Rayette Rucker

World Services for the Blind

Assistive Technology Instructor Online Trainee

Google Voice Number: 3146379985

JAWS 2020 certified

things I don’t take or granted because of chronic illness

Hello everyone,

So, these are the things I have learned not to take for granted because of having chronic illness.

I don’t take for ranted the ability to eat. I would so love to go to a restraint to get something to eat like a chicken sandwich, or that yummy ice cream, or even a soup with potatoes and cream and bacon. But I can’t.

I am stuck with getting my nutrition through a bag and a pump. It’s what keeps me alive.

Ray

Rayette Rucker

World Services for the Blind

Assistive Technology Instructor Online Trainee

Google Voice Number: 3146379985

JAWS 2020 certified

new diagnosis

I have to get an IV treatment every 6 months. I also have to take a liquid vitamin D suplement. Maybe Calcium as well. My doctor is also going to try and get me into home PT and she is going to try and see if my home nursing can be extended so my nurses can come once a week at least to help me look after my tube, as insurance only wants to approve them for 2 more weeks. Ugh!! I hate insurance.
I’m also being referred to an endocrinologist. I’m also getting my blood drawn this morning by my nurse.
Ray