Out in my manual wheelchair going to the Phamaly town hall meeting. This is my first time out on mass transit in my manual. The repair company was supposed to come today to look at my power wheelchair, but the tech called out apparently. Third or fourth time that’s happened. Now they can’t come out until Friday. At least the busses run door to door for this trip, and Rose can give me a ride home. It’s almost like someone taking your legs away for a week. Thank goodness I have the manual and don’t have to push myself far tonight.
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.
Out at urology. The suspension on the left side of my power wheelchair is broken, as a piece fell off last week without me realizing. I wish I didn’t have to use it until I get it fixed, but the only backup I have is my manual chair, and my right shoulder is hurting again so that’s not an option. I hope I’m no doing more damage, but what can I do? At least I have my wheelchairs thank to Medicaid. Without them I would be stuck at home with no life.