I really wanted to have turkey this year, so I figured out a way. Happy Thanksgiving everyone! I’m so grateful to have all of you in my life! 💜
In the ER again (I was just here Friday night). Apparently my potassium was high, so my doc sent me here to have it rechecked. It was likely due to an error in drawing it, but better safe than sorry. Is it bad when you lose track of how many times you’ve had to go to the ER in a year? 😛
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.
I was out today in the heat. I don’t sweat from dysautonomia, and my “CPU” got way too overheated. I’m running IV fluids from the fridge to try to cool me off. Anyone else feel like a cyborg? (The mask was because the smoke from fires in the mountains was setting off my mast cell activation syndrome)
This is the IV nutrition and medication I need to stay alive every day. (Apparently, I’m a messy eater… 😜) I have severe gastroparesis and intestinal failure from Ehlers Danlos Syndrome, and I am unable to eat or tolerate formula through my feeding tube. I am completely dependent on TPN (IV nutrition) to stay alive, and would have died last year without it. Medicaid pays for this life-sustaining treatment, which allows me to keep doing disability rights work and writing. Don’t let the AHCA pass! 24 million will lose coverage and people like me will die.
I realized I posted about something medical without explaining it, and assumed everyone knew what I was talking about (like a typical doctor 😜)
I had an IV port put in last Friday. It is a device that sits just under the skin, and has two access ports. By sticking a special needle through the skin and into an access port, i can get IV access to one of the major veins near my heart, so I can get the IV nutrition I need daily. There are two access sites so that I can ru two different IVs at the same time, or give myself medications while running nutrition. Here’s a picture of what it looks like access with two needles in.
the port will allow me to remove the needles and go swimming if I want, or do other activities without having a line hanging out. Hopefully this will last me a long time
Here’s a picture of me with the port accessed.
This is what the port itself looks like.
Port is in!