One year ago today, I started TPN (IV nutrition). At the time, I had only been getting about 600 calories a day, between the little I could still eat and the formula I was getting constantly through my J tube. Within two weeks of starting, I couldn’t even get the 600 calories and became fully TPN dependent. It hasn’t always been easy, but it’s kept me alive for a year now. In that year, I have only been able to eat three eggs (for a medical test), two small pieces of potato chips, and a piece of tofu, none of which went well. I eat a ton of skittles and jelly beans, but only because they easily drain out of my stomach through my G tube. At least I’m alive and still causing trouble. In other news my SSDI hearing was delayed until January, so I have to wait even longer to get my neck (and speech) fixed. It’s only been three years since I applied.
This is the smoking gun, so to speak, for what’s going on with me. If you’ve seen me in the last few weeks, you’ll know I’m wearing an impressive neck brace, but it lets me talk. This angle is the angle between my neck and my skull. That should be around 145, and less than 135 needs surgery to fix. The reason being my brainstem (which controls most of the vital functions in my body) is being stretched over that point. This is happening from weak ligaments from the connective tissue disease I have, Ehlers Danlos #ehlersdanlos . The part of my brainstem that’s getting poked let’s me talk, so as soon as I take the neck brace off, the speech problems come back within seconds. The fix is to have my skull fused to the first two vertebrae, and I’m in the process of finding a surgeon. I’m looking into one in Colorado who takes Colorado Medicaid #healthfirstcolorado , but if @sencorygardner and @senbennetco vote to pass a bill that cuts funding to Medicaid, I will lose my insurance and have no way to stabilize my neck. The neck brace isn’t perfect, and despite the improvement I’m still declining slowly. Never mind the fact that Medicaid pays for the IV nutrition that I need to live. Call your senators and urge them to vote no on any bill that cuts funding to Medicaid. The tax cuts will only benefit the uber wealthy too!
My Thanksgiving. Not eating is tough. At least I get to spend time with family.
PICC in! It’s purple too, my favorite color. Probably starting TPN tomorrow. Now I have three tubes sticking out of my body. Isn’t life interesting…
One of the major illnesses I deal with is called Gastroparesis (GP). GP is a fancy way of saying the stomach and intestines stop moving like they’re supposed to and have trouble emptying food. As a result, I deal with nausea and stomach pain on a daily basis, and fill up after only a few bites of food. I don’t often talk about my symptoms because they seem dwarfed behind all of the other problems from my neurological illness, but they have been a constant presence in my life since 2013.