I'm 42 and I've been living with RA for 19 years. Although my friends and family are aware of my condition, I've never known anyone else with it and I've never really discussed with anyone how it effects me. I'm not sure that I have a question for the forum, I just need to get this out there regardless if anyone actually reads it.
My first 2 years were brutal, I was young and scared and was left unable to walk for a long time. Luckily I went a very long time before having another major flare-up. I had been on high-dose Ibuprofen (2400-3200mg daily) for about 12 years with only moderate issues.
A few years ago another major flare-up hit and I started on Methotrexate and Plaquenil. The methotrexate sucked: weekly injections left me ill for 24 hours, no energy, hair fell out...ugh! about a year and half ago i started Humira, I was thrilled about the relative lack of side effects, however, Humira seems less effective for me. I can always tell when I am about 2 days from my shot. I dealt with lots of moderate pain, swelling etc and then last month I got another major flare-up. DANG IT ALL! Doesn't RA know that I have better things to do than deal with this?? I've had my Humira increased to every 10 days, still on Plaquenil, did about 2 weeks on the Prednisone (just enough to make me really feisty) and now replacing prednisone with ibuprofen again.
The Doc is going to switch me to another biologic in September--whatever one the insurance will pay for.
I guess I didn't realize when I started these meds that they would lose effectiveness and i'd have to go on the med merry go round, but reading so many of the posts here it seems to be the norm. That helps to know that its not just me.
I work full-time and that includes lots of out-of-state travel. I also maintain the household, cook, clean, laundry, shop, etc. I feel like I'm literally battling RA these days. It wants to win and I have to fight back hard to maintain my ground. I had to clean the dust off my cane and use it for the first time in a few years and that was hard to accept. I went as long as I could without it. It's hard for me to ask for help and even harder to accept it, even from an inanimate object like a cane. Stupid cane!
The family gets mad at me because I won't sit and rest, but they don't understand, I hurt if i sit, i hurt if i lay down, so I figure I might as well do something constructive while I'm hurting. Besides, I'd rather be in pain and be mobile. I know what it's like to not be able to stand, walk, brush my own teeth and that is absolutely unbearable.
Most days I'm OK emotionally concerning the RA. I do occasionally suffer the what-if's: what if I don't get better, what if I end up in a wheelchair, what if I can't take care of myself. those thoughts are just as destructive as the disease. More often than not though the RA just pisses me off. I've worked so hard my whole life to be independant, self-sufficient and choosing where I want to be in this world and in one fell swoop the RA can take it all away. Stupid RA!
Ok, I feel a smidge better.