Friday, September 21, 2012

Hasn't hit me yet...

For the past couple of months, I've had a different struggle. I am feeling great. I am feeling so fantastic, that I have been training to run a 5K on Sunday (the Army Run here in Ottawa). Yes,  you are at the right URL and reading the correct blog. Do not change the channel.

As it turns out, I can run, bike and strength train and not incur joint pain. I've taken the slow road on running, starting with walking and run intervals. And then I ran a little more, and walked a little less. I slowly and steadily over the course of 3.5 months worked my way up to running 5K (3 miles for my American friends). And it's not as scary as you might think.

Before I was diagnosed, I was an athlete. Basketball, volleyball and soccer - all played on the High School teams, in addition to playing recreational and city rep level basketball.  All that stopped when I was diagnosed. And if I sit back in my armchair, I see now that it was tough finding a new identity without all the sports in amongst all the challenges of navigating high school politics.

What I see now, is me struggling to admit and talk about how great I feel. I have an irrational fear that if I talk about it, somehow the pain-free joints will disappear. I am waiting for the other shoe to fall, as it were. This joyride has to come to an end at some point - right? I'm finding it hard to be happy for myself. I keep thinking that every little ache and pain is the start of a flare.

My struggle has been with how much exercise can I do, for how long, and is that twinge in my knee the start of a flare, or is that normal for normal people? I've not have a "normal" relationship with my joints for well over 21 years, and I'm just feeling things out to see what I can actually do and not feel pain.

I have not felt this good my entire adult life and it scares the daylights out of me. 

For those who are interested in what finally worked for me - Actemra (Tocilizumab). And that is all that I am on. The occasional anti-inflammatory, but no other regular meds. I've been there, done that in terms of a laundry list of RA meds I've been on, and I've finally found the one that works for me.

Blue Rodeo has a song with the same title of my post. Maybe it will take my first 5K for it to finally hit me.

Tuesday, September 18, 2012

Not as scary as you might think...

I may have left some of you hanging last month and the month before that and the one before that... I posted about this big Blog Out Loud Event, and then I disappeared. Sorry about that.

I survived reading my blog out loud. My summary of the experience would be that it wasn't as scary as I thought it would be (hence the title of this post). I spoke clearly, slowly and only teared up once. There was thunderous applause and a few tears wiped away. It was an emotional post for me, even to read it 9 months later.

For the longest time, my blog has been mostly private. You will not find a "like" or reference on my Facebook page about it. I've found in the past year, since shoulder replacement #2, I have been more open about my illness and sharing of my experience - hence the Blog Out Loud event.

This whole sharing with people about my medical life has been a wonderful experience, for the most part. Most people are interested, concerned and curious. They aren't judging me for everything I'm not doing, they are in awe of what I can do with the cards that have been dealt to me. Again, not as scary as you think, spilling your sordid medical history to folks who thought they knew you, only to find out you beep in airports and are partially bionic - cue the music.

Sometimes I struggle with finding a song that works with the theme of my posts, but today, it was a gimme. The Tragically Hip are the ultimate Canadian Band, and one of my favourite songs is "Courage". While I don't use this word to describe myself, I understand that others do.