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.


7 responses

  1. Happy to find someone else who suffers with both chronic migraine and RA. I am only recently diagnosed with the latter (though I’ve known I had SOMEthing for years), so am still on the very first drug I’ve tried (Plaquenil), which seems to have zero effect, except for making me more susceptible to others’ sniffles. The migraines have been lifelong (I’m 58).

    • Heya Max. Fun combo, right? That’s the exact same kind of timeline I experienced. I was diagnosed with chronic migraines when I was in my mid-20s, and then knew I had “something” for years… and finally a rheumatologist figured out I had RA (and fibromyalgia). So many people with RA have chronic migraines!! I have a neurologist/headache specialist and she says that people with RA sometimes get headaches because there is one joint in the spine, which is at the tippy top. This can irritate the occipital nerve, which runs up the back of the head. How long have you been on the Plaquenil? It seems I’ll either be trying Humira or Enbrel (I don’t know much about either) this time…

  2. if it’s painful to type, look at speech-to-text. windows, mac,ios, and i imagine android all support it. you can speak your words and they get typed on the screen and not have to physically type them. one caveat: it is far from perfect. for me it’s about a wash between typing and s2t. i have good fingers, bad typing skills and sometimes muddled speech. perhaps you might a different combo and it would work better for you.

    • I forgot to reply to this, but thanks, biplarsojourner! i have been thinking about this, especially at home. I do like to listen to music when I work, and wonder if I’ll be able to do that while using speech-to-text. Maybe I can if I use headphones for the music. I will look into it. 🙂

      • The systems are getting pretty good when it comes to background noise. I can use it while watching TV, if there is a conversation going on nearby, or in the car with the radio on. So, you may have regulate you music volume to get it work well.

        If on a PC or a Mac, there is commercial software that more feature rich than the capability that comes with the OS. Dragon Naturally Speaking is one example. Sometimes there are software headset combos that will improve efficiency.

  3. I feel your pain. Not literally, but extremely much in a figurative way. RA BITES it. Let us know where you land on the wheel of meds.

  4. I was recently diagnosed with RA (April 2017). I am terrified and in tremendous pain. What do I do? I feel so alone. Taking Plaquenil with little relief. I am beyond depression. Your blog has helped. I only wish I could ask you a million questions.

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