Woe is me post- scroll on by if you don’t care. I know I am lucky to be alive but today I’m not feeling so great.
My day started with an EKG to be sure I can get some new meds. Then an appointment at the lymph edema clinic where they said if I want to continue to function I need to keep seeing the massage therapist and that I should really probably go 2x a month which is $200 and not covered by insurance and takes 3 hours total.
The neuropathy in my feet is worse than ever. I get a pedicure 1x a month so I can get a “toes check” because I cant feel my feet from the neuropathy. Insurance wont cover that either and they might not cover the neuropathy med they want to put me on because it’s experimental just like 2 other meds I am taking that arent covered and already cost me almost $400 a month. They didnt cover the vibration plate or the leg pumps either but I was able to get those on my own so I don’t have to go to PT a couple times a week and use up all of my PTO.
I have a referral to a new rheumatologist next month because the IA in my hands is getting worse and now there is concern about permanent joint damage. They are worried it’s worse than I realize because my hands and feet are numb and I might not be able to feel the whole extent of the pain that would be an indicator of severity. Hopefully she will have some ideas/answers at the end of September.
And, they cant get my damn thyroid stabilized, my levels are bouncing around like a superball so I am tired and cranky and sad. Chemo kinda ruined my thyroid.
It’s such a weird place to be in to be grateful to be alive, to have survivors guilt, and to have times when everything hurts so bad I want to run away. And I know I have it easy. I have insurance, a home, a car, I love my work and I have the best friends ever. I cant imagine what this is like for people without support systems like mine. Once cancer treatment is actively over the long term effects can be so significant.
End whiney piss baby rant.
