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.
3 comments:
I know just what you mean, Megan. I can go for months without thinking about it -- just dealing with my RA from day to day -- and then suddenly, it comes to me that this is never going to stop. I will ALWAYS be fighting this pain; I will always be dreading disability or coping without the function I've already lost.
And yet I DID go through several years -- roughly 8 -- with my RA in remission. It was great, and I'm deeply thankful for that reprieve. During those years I mostly stopped thinking about RA at all. But ... it came back. And this time around, it's almost like a different disease in its lesser intensity. Yet I know what it CAN be, because I went through it.
In the end, we all have to make do with what we've got. We can be mindful of what we have, rather than mourning what we don't. And the world is so full of so much beauty, it's a shame not to open our minds and our eyes and be joyful in it.
You've come to a quiet place, it seems, one where you can be aware of the future even as you acknowledge the past and find joy in the present. And there is still, always, reason for hope. It's a very great gift. Thank you for sharing your heart.
Hello,
As someone who blogs about RA, I thought you may be interested in a campaign called Hand in Hand for RA (www.handinhandforRA.com) that encourages people with RA to volunteer, share their stories and inspire others. The campaign is all about turning the tables on volunteerism and showing that people with RA don’t want to be held back by their disease – rather they can and want to give back to their communities. Please check out the site.
I've felt just the same. I try really hard not to think about my future with RA, but sometimes it hits me that this is never going to go away. It's hard to stay positive sometimes.
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