Thankful for my feeding tube

I am thankful for my feeding tube. It gives me nutrition. It gives me life. Without it, I would probably die. Chronic illness is a monster, but that tube gives me power. It gives me the power to live the best life I can live. It gives me the freedom to go where I want to go and do what I want to do. Gastroparesis will not defeat me. Maybe in the next 5 to 10 years, they will come out with a treatment that is covered by state insurances and is FDA approved, but until then, I am grateful for this tube. Yes, it may be uncomfortable. Yes, it may look weird to other people, but it’s my lifeline. Did I want this tube at 27 or at all? No, I didn’t, but I needed it to sustain my life. My stomach is almost completely paralyzed, but with this tube, I can live. Have a good day everyone. Thanks for reading.

Ray

CT scan tomorrow

So we have a CT scan tomorrow. Our GI doctor wants to make sure there isn’t anything going besides the gastroparesis if he can see anything else on a CT scan that isn’t functionally wrong. We really need an intestinal motility test, but there is no one around here that does them. Hoping tomorrow goes well.
Ray

EDS awareness month

You can’t always tell what disability someone has just by looking at them. EDS is one of those invisible disabilities. You can’t see our pain, but it’s a daily struggle. May is EDS awareness month. It could be your mother, your father, the person sitting next to you, your best friend, or even you. You never know who around you could be dealing with a chronic illness. Don’t judge by what you see on the outside, because just because everything looks fine to you, that outer exterrior could be hiding a world of joint dislocations, subluxations, pain and a merriad of other debilitating symptoms. #EDSAwarenessMonth

Venting about medical stuff trigger warning mentions weight

I’m going to vent. Just warning you.

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So, I had my appointment with my G.I. doctor on Wednesday, and he wants to place a feeding tube. I can’t try any of the motility meds for gastroparesis for various reasons. Dietary modification is not working. He made a referral to interventional radiology who said they would not place it right now because of the coronavirus. The i’m just at a complete loss as to what I am supposed to do because I am in a course right now and I’m having trouble concentrating on my work. Does anyone have any advice? Feeling alone lost and frustrated!stay at home order for Illinois is extended through May 30, and my labs are crap, and I’m 5 feet four and 88 pounds. I need a way to get nutrition! I have severe gastroparesis, and at four hours, I had 82% food retained. I can’t tolerate the nutritional shakes, and can do liquids at best, but not even very much of those. I also have POTS and EDS. I saw my geneticist yesterday for the first time, and she wants me to get the feeding tube as well. Also my autonomic specialist does too.

from Alison

Hi its Alison, and im 9. Im watchin a video. I love kitten videos. Im tryin to stay distracted. I just want rainbows and unicorns not bad stuff.

Alison