Many times I have heard that my decision for not going on medicine means that I am giving up. If I was truly giving up, I wouldn't be here today. I would not have fought to make it out of 2009.
The reason I am not on meds is many fold. I cannot tolerate anything, Nsaids, opiates, antibiotics even have disasterous effects on me. I tend to have severe reactions and side-effects. I cannot risk this, especially as I don't have any means or income to pay for these meds, so to put money that I do not have on something that will make me worse in effects is not something I am willing to do.
Despite that I am unable to drive or work, I have also heard 'why don't you just try it since you aren't doing anything now'. Thank you. I don't feel useless enough. Why not become a living zombie since I don't contribute a damn thing to society. Why prolong living like a vegetable and just wait for death?
I took so much pride in being independent, and I have such little of it left, I will not have my mind atrophy as my body is.
Would I love to be on meds so I can try to 'live'? Of course I do. My reasons and means don't allow for it. So I live as I am failing inside. It is such terrible pain that never lets up. Chronic means always there, and it is scary. Again if I am happy or laughing it doesn't mean I am without pain. This is the worst thing I have ever been through and I have always been a tough cookie. I try very hard not to complain, even in the worst of it. I cry, alot.
I am not willing to go through worse effects of meds that don't directly treat what I am dealing with. I can only hope the new med - first one for lupus will be approved soon, and then I will see if I can even take that, and figure out how to pay for it. So far it is over $20k a year - and no insurance nor income will make this difficult.
I am not giving up or giving in. I would not still be here if I did.
I raise my cup to you, Rhian. You're a very strong and brave woman. I admire your independence on this issue. My doc always says, "If the side effects outweigh the benefits then it makes no sense to be on it!" I do hope that something new comes out and comes out soon for us lupies. I'd like to have my brain back, thank you very much! :) Keep up the good fight, Rhian.
ReplyDelete<3 you Rhian!
ReplyDeleteHey Rhian,
ReplyDeleteI only know you from Uncast & The Dah Theory, but I just wanted to say keep on keeping your head up.
Jay
masters of none
Here's to hoping the new drug indeed turns out to be both effective and affordable. Like many must have said before, I admire your courage, I wish I had half of it. All the best for you.
ReplyDeletePia
I'm sorry to read about the amount of judgment you've gotten. Tho not surprised in the slightest.
ReplyDeleteYou contribute a great deal to me, the spoonie community on Twitter, and from what I can tell your podcast listeners - just a partial list.
*gentle hugs*