Gastroparesis GERD & More

eckelsburrows
eckelsburrows Posts: 17 Member
in Motivation and Support
Hi, my name is ...
ComplexSpoonie.
Well, on some social media channels anyway. A microscopically tiny blogger & content creator writing this on probably the 80th night I was unable to meet any of my nutritional goals via oral intake.

I'm a mostly vegan allergic to shellfish wheelchair using human with an incredibly broken GI system.

I qualified for a g tube a long time ago & refused it. I'm on a nutritionist & speech language pathologist designed diet that is supposed to be 50% Soylent formula and 50% quarter inch dice & puree table food.

I'm supposed to have a 40hr a week Food Management Aide and a 5 hr a week Baking Aide helping my FMA. I haven't had either since the world broke.

I'm supposed to have the formula covered by the Medicaid with special chronic illness waiver, but I have never had that.

I'm supposed to have a lot of supports, but right now I don't even have a dietician because Medicare no longer covers them unless you are diabetic or you have Kidney disease.

I'm anemic, dealing with with potassium and vitamin a deficiencies, and going broke while being crushed from fatigue of trying to find my foods on instacart amid supply chain shortages.

And I just wonder how many other disabled people like me are here on My Fitness Pal, trying to maintain or gain weight, trying to push that j or g tube surgery off a little longer...

...and because the world broke, they are crying inside because they know they are losing the battle, and just feel so alone.

Thank you if you read this far. It helped to get the feelings out, and I'm tired so I'm going to try to get some sleep before I start again tomorrow at 7:30am trying to get the 1400-1800 calories in the right amounts with the right nutrients into my system.

Brenda
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Replies

  • zenseekingmom
    zenseekingmom Posts: 2 Member
    Good evening Brenda. I am a vegan sped life skills elementary educational assistant. Some of my little besties are in a chair. I also speak in spoons. Just wanted to stop by and remind you that you are amazing. That is all :)
  • Minihaha77
    Minihaha77 Posts: 8 Member
    Oh sweetie I feel your pain. I am a type 2 diabetic with Gerd, IBS, IBD and Neuropathy in my feet and ankles. I've had in the past month a small bowel study, upper GI and a ultra sound of my upper abdomen. Going next week to get the date for my Colonoscopy and Endoscopy.

    Needless to say its hard to eat since it bloats me and causes pain. I'm on a LC eating plan trying to get my sugar back under control. I have to force myself to eat because I know the pain and discomfort I will have afterward.

    I so hope things work out for you Brenda. We need to just keep plugging away one meal and one day at a time.

    I wish you comfort.,
    Barb~

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