Friday, March 9, 2012

To be normal again...

I really shouldn't complain. I'm able to bend my left arm, I'm able to walk, I'm able to do a lot of things that I couldn't do as of a few years ago.

But I hurt...

What stinks the most is that there has been a never ending trial with my newest new medicine. I have one month's supply in my fridge now, but will it take longer to get approved for it?

My work's insurance will not cover Humira. Humira is the only drug I can take now because it comes with an epi-pen like thing (it's a self injection) so that I don't have to see the needle or make the stabbing motion on my thigh. I used to do it in high school, but after a while I stopped being able to.

Well... my insurance refuses to pay for a dime. They say that there are three other medicines I can take (One of which failed me pretty badly in the past, all three are just needle and syringe), so I have to fail them before they will consider Humira. Well, I'm eligible for a patient assistance program, but they have to go through a host of crap first, and it'll take up to 2 WEEKS to process. Ugh. And then, the assistance program only extends to one year... I'm guessing that it means I'll just have to reapply every year, but that gets kinda old after a while.

I don't know why I complain. The days where I need to use my cane are few and far between. I desperately need to buy a new cane, my dear old Bartholomeu (Ya, I named my cane) is all cracked at the top from numerous droppings. I almost bought a new one but my pride doesn't want me to. I keep reminding myself that it would be good to have a spare one at work, but part of me (being the youngest full time employee) just can't stomach the idea of being the only one with a cane there.

I can't talk to James about this, and that makes me cry. He is great and wonderful if I need him to get something for me. He reminds me to put my medicine in my purse every evening (I take it twice a day). But with anything emotional... he kinda fails... miserably. I start to try and talk about how something makes me feel and he will either unintentionally change the subject, or wait through that awkward silence and say, "Oh... well if there's anything I can do..." No! I want you to comfort me, cry with me, tell me how YOU are hurting to see me hurt! Hold me! Encourage me to be strong and push my way through this! Tell me you don't know when it will get better, but you'll be there for me every step of the way!

He doesn't know how to deal with me like this because he hasn't seen me like this much (okay, he doesn't really know how to deal with emotions ever, but still). Sigh. I had a really bad outbreak of arthritis a couple of years ago, that's when I got my cane. It was one of the most humiliating things I ever did to walking around my college campus with that thing, but I made a game out of it. But then I got on Remicade. Two words: Miracle. Drug. I basically had no symptoms of arthritis for several years with that. In fact, it sent me into a medical remission. I didn't start having symptoms again until I stopped taking it for about 8 months. Why did I stop taking it? Well, I used to be on Mommy's insurance, which made it about a $35 copay per dose (every 2 months). Now I'm on craptastic stuff for the real world. Remicade is about $2500 a vial... I get three vials in one dose. Sigh, I always knew this say would come... oh the joys of turning 26 and getting booted off of mom's insurance!

The hope is that Humira will make me "normal" again. Right now I'm having the pain staved off with Prednizone (horrible drug don't ever take it unless for very short periods of time), Plaquinil (I'm convinced this does nothing), and a heeeeavy NSAID that I had to halve the dosage because it was giving me severe nosebleeds.

The two doses of Humira I have in my fridge are free samples from my doctor. My hope is that it will help me  just like the Remicade. My hope is that I wont struggle to be able to pick up the phone at work on the days I forget to bring my medicine. My hope is that I can go back to taking one pill a day instead of 8... my hope is... to be normal again. There were a few years there, where I could forget I had arthritis from time to time. I'd like that.

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