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
Nervous about my feeding ⠞⠥⠃⠑
Hello everyone,
FROM ⠠⠠⠁⠍⠊⠇⠊⠁
HI, IT’s AMILIA. I’M STRUGGLING A LOT. I HATE BEING IN PAIN. I JUST HATE IT. THIS IS NOT FAIR.
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
Video I made from Amber 5
TW stuffs from littles ear pain
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My ear herts. Im not sure why. Ttink something to do wif our eardrum. Reminds me of wen mommy putted a ring in my ear but don’t know why she do that. We not hear good wif that ear. It is the left one. Me no lik be in pain. No see doctor until June fir it. Not good. Not wanna herts. Not feels good.
Littles
checking in with everyone
Hello everyone,
How is everyone doing during this quaranteen?
What are you doing to stay busy?
Ray
explaining to littles
How do I explain to my littles about chronic illness? How do I explain that it won’t ever go away or that we will always be in pain? How do I explain that I can’t make their pain go away? I’m just at a loss? And how will I explain when we have to get a feeding tube?
Ray
