Worry

I’ve been trying to formulate a coherent post these last few days, but I’m having trouble coming up with phrases that make sense.  I’m having that giant fog that comes on sometimes with RA or the RA drugs or whatever it is that causes it.  The fog that takes coherent words & phrases out of my head and replaces it all with nonsense & hand gestures.  I can’t get certain words out of my head (“donkey” is today’s word) and I can’t tell my kids to do stuff without pointing and yelling because I can’t even make sense to myself, let alone them (“GO!  Do that thing!” Rolling hands around in a circle  “You know what I mean!  Left Thigh!  No!” Pointing  “I meant the bottom right cabinet!  You KNOW!” Thumbs up  “GO!”)

I’ve been on Simponi for four months.  I’m on to my third sinus infection in three months.    I’m having mini-flares that only last a day or two, then go away for a day or two, then come back again, etc.  They aren’t full on flares, but will involve just a few joints that majorly hurt (the kind where you cry when you move) instead of all my joints hurting all at once kind of moderately (the kind where an ice pack or heating pad & an action movie can take your mind off it for a while & you can stumble along through the day with help).

I was having good day yesterday (nothing but aches & no swelling), so I tried out my new gyms yoga class, which I’d been told held people of all levels, but could be modified for me.  I’ve never been in a real class before.  I’ve done it all to a video at home, with modified poses and breaks when I’m tired.  The instructor tried to modify for me, but the fact was that this class goes way past beginner and she couldn’t hold up class for me.  I tried her modifications, but I’m not flexible enough even for those.  Plus, I’m at least four dress sizes bigger than the biggest lady there.  I’m not huge, but they were all teeny tiny and could fold in half with ease.  I do not bend that way.  So that was a big downer.

Sorry I don’t have anything good to say today.  I just had to post, though, or I wouldn’t get on with things.

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4 thoughts on “Worry

  1. Brain fog – I know actually what you mean. Not only is it the meds, but also the disease itself. I also FMS so there are days where my conditions take alot out of me. sinus infections and mini flares mean that our meds aren’t a 100% and five different meds for RA and FMS. I guess they will never be 100%. All you can do is NOT give up. It is hard, but experince teaches us how.

    • My rheumatologist keeps mentioning FMS. What he actually says is “I don’t want to label you this, but you have 7-9 of the 18 tender points and some of your symptoms sound like you may be suffering from something other than just RA, but officially you don’t show all the signs of FMS.”

      The brain fog is making me nuts. I’m not giving up, but some days I choose silence over trying to explain myself.

      • Bruce says:

        OMG>>>I hate the brain fog the most of living with FMS and RA; it just makes me nuts!!!!!!!! I wish that they had a nice little pill to make it go away…but in the interim I have some games on Facebook the Hidden Oblect ones that help me to focus; especially before I need to get things done. And also I have to keep a notepad close so that I can write things down before my brain farts them out. All in all it is a very strange and sonetimes funny life that I have now, oops oh well lost my train of thought I think that it left the station without me.

      • Yes. I have a notebook that I carry around with me everywhere that has notes for every little thing in it. My husband helped me to realize that I could use my mostly-useless (it won’t sync to anything at all) phone calendar to send me reminders to do things like “Ask Marissa about x,y,z” during the times I was actually out with her. It’s becoming a joke among my friends, actually: “Hey look, she’s taking out her phone. I wonder what it’s telling her to do now?” Heheh. But it’s really helped.

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