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.

poetry from Ciara 13

Paralyzed by fear,
don’t move, 
don’t speak
don’t scream.
Let them do what they must
can’t escape so i escape into my mind
and then,
split, someone else comes to take my place.
he breaks me and molds me to what he wants me to be
i’m just laying there, alone.
is that all I’m worth?
to be used and abused?
Am I unlovable?

 

 

Thanks for reading.
Ciara 13.

angry and frustrated

It’s Melissa. I am so angry and frustrated. We were talking to Greg yesterday, and he said what if it’s mind over matter about our medical conditions. It’s not mind over matter! We have legitimate medical conditions but the problem is they are invisible! When will people get it question we live with pain every damn day! No matter what we do, there is no cure for our conditions. No, they are not terminal, but they might as well be! No one can truly understand what we are going through physically unless they’ve been through it themselves, and quite frankly, I wouldn’t wish any of these conditions on anyone, not even my worst enemy! And that’s saying something. Why is life so unfair! And I was just thinking the other day, what are people that knew us from before going to say when we get our wheelchair? They already think we don’t need a personal assistant. We hate invisible illnesses? We hate having them and the judgment of others! Sometimes, I just want to break things! I’m just so angry!
Melissa

Finally getting home health

Hello everyone,

So after months of waiting, we are finally getting home health services starting this coming Thursday. The nurse will be coming to change the port needle and dressing so that we don’t have to go to the clinic and face never ending fatigue. We are also in the process of trying to get a custom wheelchair for our postural orthostatic tachycardia syndrome and Ehlers-Danlos syndrome. I am also in the process of trying to discuss with my dysautonomia specialist the benefits of IV hydration and why it needs to continue and possibly be increased. We cannot get enough fluids through the feeding tube alone let alone sodium as well. Hoping all is well with everyone else, and have a great day. Always remember live to inspire.

I am not disabled, I am differently abled,

Ray

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

Got my tube changed

TW medical

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Hi everyone, 
So, today, we got our feeding tube changed. We had to go to Chicago to get this done. It only took like 20 minutes. We were high on dilodid. It was quite hilarious. We are on our way home now. 
Ray