HD, are you "insurable". That is -- can you GET health insurance with your medical issues? (Please forgive if I somehow missed this info in your posts.) If not, I think that it is possible that your social worker at St. Jude is able to see your situation with more clarity than you can. (So very sorry to say this.
) As someone who has BEEN in a similar situation -- I had a boss TELL me that I NEEDED to look into quitting work due to MY health issues -- and let me tell you, I was really, REALLY ticked!! I was a VERY hard worker -- and was going to PROVE that I COULD do the job -- almost to the point of completely ruining my health. My boss (arrrrgghhhh!) was right -- I did need to quit -- my body "quit" on me, so to speak -- and I am now on disability.
What will happen to you down the line IF you cannot work at all -- cannot afford any meds -- and THEN have to apply for SSDI or SSI? Months or years of waiting for a decision? And then TWO years AFTER approved date of onset BEFORE you get Medicare. It is not fun. Can you survive??
My disabling condition isn't particularly "fun" -- but, it isn't usually painful. However, I have chronic migraines that have made me want to DIE! My sister has migraines AND neuropathy. She says the neuropathy is worse. So, I cannot IMAGINE you going without meds.
I can't tell you what to do -- or when -- or how. Just weigh all the facts -- and ask more questions if you need to. This stuff is important
. When you are ON meds (narcotic types) -- your judgement is "clouded". Give me two Fioricet and I'm a "happy" girl.
Didn't you say you are taking Oxycontin? You probably feel "fine" about most everything. Keep THAT in mind, OK???
Wishing you the best and keeping you in my prayers.