Neverending Story

When the Rasuvo (methotrexate) injections began working maybe a year and a half ago, some naive part of me decided I was “done” with having to deal with medicating rheumatoid arthritis. Well THAT was very stupid.

I am feeling pretty fucking depressed right now. I’m trying to allow myself to fully feel it so I can move through it and not be bitter or feel pity. The methotrexate isn’t working much anymore and I’m probably going to have to try another medication for the RA soon, presumably a biologic. Many other RA people would say, “DUH, GENIUS! That’s common!” but I really thought I’d hit the jackpot with methotrexate. It was working so well for me. I was feeling pretty good… good enough to work full time and almost function as if I were a 70-year-old in amazing shape for her age (I’m 33). Instead of this crap. C’mon. I feel really dumb right now for not realizing that luck runs out for everybody. I’m not special! Now I’m scared about trying new meds, the side effects…. Biologics aren’t fucking around. But neither is my immune system right now. It’s pretty angry at me.

So my body hurts a lot, everywhere, it’s difficult to deal with the pain emotionally. It’s just like… I can’t get away from it and I would never hurt myself, but when people with severe chronic pain hurt themselves, I understand it. And I think that’s the key to empathy. Don’t be afraid to face these hard feelings and say them out loud. This kind of pain will make you crazy if you’re not careful–who could be blamed?! I think I’ve only retained some shred of sanity because the sun came out a couple times (I adore the sun… warmth on my skin is like an elixir on me), and I had a couple hours here and there of lower levels of pain. But then last night I started getting a severely sore throat. It seems I have some kind of upper respiratory infection. Are you KIDDING me right now?! So I had to take off work. That makes me feel like an asshole. I keep feeling guilty for being sick. Not helpful. A few days ago I had to take a day off work because I got FOOD poisoning. It’s like some bad-health demon is following me around lately… get away from me!!!! All my chronic health problems are ENOUGH.

It is painful to type. This is a bummer because writing and keeping connected both help. I live through social media much of the time since I never know if I will be able to go out when I’m sick. My forearms are really shitty lately. I need this space.

WELL. I guess here marks a new chapter, and when I start on whatever new shit drug I’m taking I’ll document what that’s like. Hopefully it’ll be of some help to somebody, if not to myself.

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I’m back, and here’s what I’m gonna do

If you’d been following my blog posts in the past, you may have noticed I disappeared for a while. That’s because I got really sick, was diagnosed with rheumatoid arthritis, went through a lot of meds to find the right doses and such, etc. It’s been… a ride. But I’m feeling a lot better!

Now I have a new goal. This blog is going to be about putting into words the ways I intend to live life fully with chronic pain/chronic illness, especially (but not limited to) rheumatoid arthritis. When I experience a new procedure or a new medication, I will try to describe it in great detail, because it seems that other people respond to that (see my colonoscopy prep post for evidence; I can’t tell you how heartwarming it is to know that post gave so many people a good laugh). Since I haven’t been blogging for a while, I’ll definitely write some posts and play “catch up” in that regard. For example, I’ll write a post detailing what it’s like to give yourself a Rasuvo injection, because I wish I’d known what that was like before doing it myself! Everyone who has to go through a medical procedure or take a new drug wants to know what it was like for other people. Real people. That’s not too hard, I can provide that! I’m a real person! (waves)

I think living with chronic pain is something that can be doneĀ well. It isn’t a death sentence, it isn’t something that has to be an absolute nightmare, though it CAN be at times, and nobody should diminish your pain. Fuck anyone who tries to convince you chronic pain is anything but TERRIBLE. It’s terrible, we all know that. But I am eager to push through that into something different, and I have discovered a lot of ways to really live with these pains. I’m interested in sharing my thoughts with others and look forward to doing so. I hope others will share their thoughts with me, too.

Glad to be back, everyone.