counting down the days

I am more than ready for my upcoming rheumatologist appointment. So ready, in fact, that I had them move it back three days, from next Thursday to Monday because I wasn’t so sure I could make it the additional 96 hours or so. It’s amazing how quickly things can go from bad to worse; just last week, I was telling the Professor that there’s no point in moving my appointment back, as it wasn’t all that big a difference to push it back by just three days. Oh, how I long to go back to last week, when that was true.

I’m trying to figure out ways I can get across to her just how poorly I’ve been doing and how far I’ve fallen in terms of feeling halfway decent. The Professor is actually coming to this appointment, so I’ve tasked him with making sure I don’t make light of it and pretend everything’s more or less OK. I’m sure that will help. I was doing well for awhile in tracking my symptoms, but lately I’ve been forgetting. (Thanks, brain fog!)

I guess I’ve got a lot riding on this appointment. I’m not really sure where we’re going to go from here. I’ve tried most of the biologics out there, and the ones I haven’t tried are so brand new that I’m not so sure I want to be a guinea pig for them. My pops wants me to try Celebrex, which he’s apparently taking for lower back pain and is convinced it’s a panacea that will make everything better for me. I told him I’d bring it up with my rheumatologist, so I guess that’s one potential new avenue for me.

I just want to feel better. I’m not even shooting for great at the moment; I’d settle for simply not as bad as I’m doing right now. Once we clear this hurdle, though, I’m going to be gunning for awesome all over again.

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6 thoughts on “counting down the days

  1. I always do the “making light of it” thing. I feel like I’m being a whiner if I tell my rheumatologist (or anybody else) how bad things can get, especially when my blood work stays so infuriatingly normal. Good luck at your appointment. I hope you and your rheumy are able to come up with an action plan that gets you some relief.

  2. Consider printing out a number of your recent posts on this blog, Ness, and maybe send them to your doctor ahead of your appointment. Maybe she won’t have the time to read them, but then again, maybe she will. At the very least they’ll give her a good feel for how much you’ve been hurting and how it has affected your day-to-day life lately. And that’s even if she just skims them while you’re sitting there. I’d think that she’d note (at least) the effort you took to make sure she saw them as an indication of how seriously your life has been affected by this continuous, grinding pain.

    I wish you the very best of luck in communicating with your doc–and I hope that she has answers and possibly solutions for you. Dad sounds like a sweetie, but … uh… Celebrex? If wishes were pennies…

    Hugs to you, Nessie. Sending warmth, comfort, care and patience your way.

  3. I do the same thing when I go to my rheumy. I blame the fact that I’ve had too many docs that just flat out didn’t believe me (stupid PCMH…). I might steal your idea of bringing the hubby along to make sure someone is keeping me honest. It’s hard for me to do that because I have the same problem that Helen does, every time I get my labs done there isn’t a damn thing out of place. >_<

    I really hope you and your doc will be able to find something that will work for you. Good luck dear! *hugs*

    • Ugh, stupid PCMH indeed. I’m hoping it will be good to have someone along who knows how rough it’s been for me lately and will force me to be honest about it. I’m lucky, I guess, in that there’s *always* something wrong with my labs, even when I’m doing well.

  4. Oh man…I hope your rheumy is able to get you feeling better so soon. You are so right with how quickly things can go from bad to worse! Take care of yourself!

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