Wednesday, January 27, 2010

No end in sight

17 years, 6 months and a few days. Daily. Chronic. Never-ending. Infinite. Constant. Permanent. Yuck.

Here's the thing that has been on my mind recently - there is no end. There is no cure. I haven't seen a remission in a good long while. My meds are decreasing on some ways - reducing my prednisone - but I've also brought in some heavy hitters - Enbrel - to fight the battle. Overall, I'd say I'm up on the medication front. And this is to keep me comfortable. No pain-free. Not in remission. Just functioning at an "arthritic normal" level.

I used to believe that I was working towards some mystical place called remission - that one magical day my meds would decrease. I'm not naive enough to believe I could some day live drug-free, however fewer meds would be nice. I think I've given up on that dream and am working towards not taking more meds. I am aiming high on that one.

I know that since biologics have entered my life - and many others in the RA blog community - there has been a significant impact on overall disease activity. Problem is for me - I have 17 years of RA damage to contend with - resulting in 1 teflon shoulder and 1 on the way in 2010. But in the end, there is no end in sight. Some days I have tonnes of energy - others, not so much. And while there is no end in sight, at least some days I have the energy to enjoy the scenery along the way.

Sunday, January 24, 2010

Obsessing over my hands

Lately I have been obsessing over the ulnar deviation (swanning) in my hands. As you can see from the photo above - the index and middle finger sway to the right. To the casual observer, this may not look like much - however, I am not a casual observer of my hands. I see them all day, every day and wonder what they will look like in to 10, 20, 30 years. I've seen seniors who have hands they can barely used because of deformities, and I worry that will happen to me. I know this will not happen today, tomorrow or the next day, but I know it will.

RA can be a tricky disease. One day you're fine and then changes slowly creep in, and next thing you know, it's 5 years later and your list of "what I used to be able to do" is gaining equilibrium with the list of things you can do. Scary. Just sorta sneaks up on you and taps you on the shoulder and says "Boo!"

I've had RA for 18 years - I've had it for more of my life than not, and when I take stock of what damage I've had so far, I know there is more to come. I'm not pessimistic, I'm realistic. I don't want to stick my head in the sand and pretend it isn't happening. I'm trying to prevent further damage, which includes taking an honest inventory of what could happen, and then planning for it. One more item to add to my list for my next rheumatology visit...

Saturday, January 16, 2010

Layers of an Onion

2009 was a world of change on my perspective on life. Really. I feel like I woke up from a coma realizing what is important and I was on a mission - but taking a turtle as opposed to a hare approach to my plan. I must thank RA Guy for inspiring me. In one of his posts he talks about his health care team. And it got me thinking - who is on Team Graham? (crickets) Hence, my mission to create Team Graham, mobilize the troops and move me towards a better place of health.

So far, I've recruited my naturopath, a physiotherapist, a yoga instructor and a therapist. Team Graham is growing by leaps and bounds! Oh, yes, and my trusty rheumatologist and ortho surgeon. I'm looking for a better state of health, and have tried several of the above approaches before - separately - with some success. I'm looking to gain some help from each area in an effort to navigate the Prednisone-reduction and the post-prednisone era that is coming. I know that further flares are around the corner, and I want to be prepared.