putting this out there
I switched doctor's a few months back, because I'm not really responding to my ghastly expensive medication. From a blood analysis it seems I'm not producing enough antibodies to synthesize the rat proteins that are supposed to reduce inflammation. So an entire family of drugs is wiped out as an option there. I also don't produce a specific protein needed to convert this other drug, so that's been ruled out. Now that want me to take another blood test to see if this third drug might work, but they need to make sure I'm not carrying the JC Virus in order to ensure that the meds won't kill me. No joke. Apparently the meds may cause some kind of brain disease known as PML which would eventually kill me. But only if I have the JC virus.
Going to get tested for that tomorrow. Still have my next infusion appointment for now. Not telling my mom any of this. She'd just worry, and complain, and make suggestions and come up with scenarios that only exist in her imagination and piss me off in the end.
I do want to make a will, and a living will though. Even if I don't end up on brain disease inducing medication, I'll need surgery most likely by the end of the year, so there's that. I don't doubt the miracles of modern medicine, I just doubt they'll be able to do anything for me in time.
I know people are all over the Twitters and Facebook now, but this is what's going on with me, and...well...just so you know. Today I'm tired, and in pain, and worried. I feel like I have so much life yet to live, but might not have the chance to live it.
Going to get tested for that tomorrow. Still have my next infusion appointment for now. Not telling my mom any of this. She'd just worry, and complain, and make suggestions and come up with scenarios that only exist in her imagination and piss me off in the end.
I do want to make a will, and a living will though. Even if I don't end up on brain disease inducing medication, I'll need surgery most likely by the end of the year, so there's that. I don't doubt the miracles of modern medicine, I just doubt they'll be able to do anything for me in time.
I know people are all over the Twitters and Facebook now, but this is what's going on with me, and...well...just so you know. Today I'm tired, and in pain, and worried. I feel like I have so much life yet to live, but might not have the chance to live it.