I’m Still Here

Wow. It’s been quiet over here. I’ve been so busy living my life that I ran out of time to talk about it. And I think that’s pretty okay.

Today needs a blog post, though – I need to process some stuff and I love sharing my little victories in this space (it balances out all the bad stuff, I think). See, today was my annual visit with my rheumatologist. Once a year, I get all stressed out knowing that this is coming. It freaks me out because it’s really a one time shot at developing a plan for how to tackle my life for the next 365 days. Sometimes it goes well and it’s an encouragement that sets me up to feel like I can fight my way around the sun one more time. Sometimes it doesn’t and it’s devastating because I don’t really get another chance until next year.

Last year, if you’ll recall, it didn’t go well. There was weeping and mourning and gnashing of teeth. The doctor was in a hurry, I didn’t feel heard, and I sat in a pit of despair for a few days (read: WEEKS) trying to figure out what to do.

Today, it did. All the stars aligned and my doctor was unhurried and attentive and we have a great talk about how I’m doing – how I’m REALLY doing. I really feel like I need to document and share some of the things I took away from our conversation, so they’re here to read when I need them:

  • I’M DOING GREAT. Great doesn’t look like being totally healthy. Great looks like working full time, being happily married, and having my kid think I’m a good mom. Great isn’t GOOD ENOUGH – but it’s still something to celebrate.
  • I’M ON THE RIGHT TRACK, MED-WISE. He really applauded the fact that I’ve been as sick as I am for as long as I’ve been without resorting to really nasty narcotics. He said that he sees so many people who are sick like me but are throwing their lives away because they’ve gotten addicted to narcotics – and while some of those drugs might help me control my pain better, they can take away more than they give. I could be living with less pain… But living with less LIFE. And I make the right choice every single day.
  • IT’S ALL IN MY HEAD. Really. I’ve been dealing with what I assumed was a massive arthritis flare this week… But there’s virtually no trace of inflammation in my body right now. Which means that – while I still have mild rheumatoid arthritis – we’re primarily dealing with fibro at this point. That sucks because arthritis is infinitely more treatable. It doesn’t suck because – as brutal as this pain is – I’m actually not damaging my joints. It’s just my brain effing up its pain signals in a major way, dialing 911 when there’s no fire. What a crazy disease, you guys.
  • I’M DOING EVERYTHING I CAN DO. I’m awesome at being a fibro patient. He was totally intrigued by the work I’ve done with yoga certified physiotherapists and my stint with that insane Chinese acupuncture doctor. We talked about everything I’m doing right – and it’s A LOT. He emphasized that if he had to make a list of what he WISHES all his fibro patients did to try to help themselves, I’d have every box checked. It sucks that I can’t do more… But instead of pouting about the fact that I can’t run 5K every day anymore (and honestly, I do pout about that – a lot), I need to celebrate every time I’m able to walk around the block or do 5 minutes of yoga at home. That’s a mental shift that’s tough for me. REALLY TOUGH. But I know he’s right. I need to hold myself to a standard of fibromyalgia, not a standard of normal people. I’m really freaking sick. I forget that all the time.
  • I GOT MY PRESCRIPTION. There’s a med that was working pretty well for me a few years ago, but the doctor who prescribed it to me left the province – and I haven’t been able to find another doctor who will write it for me (it’s a really restricted triplicate prescription – and no, you really don’t want to know what I have to pay out of pocket for those precious, precious pills). He’s writing it for me. It’s kind of a game changer. I didn’t take it every day, but it definitely helped me through my flares and I can’t wait to see if it still works for me. Unfortunately, it may be a two week wait to get it processed. But it’s HOPE.
  • THEY’RE REALLY GAINING MOMENTUM ON FIBRO RESEARCH. He’s doing some really fascinating work with rheumatologists all over the world who see fibro patients and there’s some major research coming in the next few years. That is so exciting. I actually ugly cried about it this afternoon. Fibro research has been – for the most part – actually kind of pathetic, and to know that some of the best researchers in the world are on it now? That’s unicorn glitter hearts and fairies level magic, my friends.
  • THERE IS HOPE AND A REASON TO KEEP ON. More research is coming. More research eventually means new, better, and more effective treatments. I’m only 34 years old… If I can just hang on and keep doing what I’m doing, I’ll be the one to benefit the most when those breakthroughs come – big and small – because I’ll have a life that’s SO WORTH SAVING.

So that’s it. HOPE. HOPE and a hell of a lot of pain, after two hours of being poked and prodded and otherwise tortured. But mostly HOPE.

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