Monday, November 29, 2010

The Worst of Times and the Best of Times


For as long as I can remember, I have been the worst case scenario.

When I was growing up, there weren't a lot of options in terms of treating RA or JRA (now called Juvenile Idiopathic Arthritis). And when I say there weren't a lot of options, I mean there really wasn't more than one, maybe two. There was gold injections and there was prednisone and although prednisone was used when things got really bad - as it did for me when I was 12 and my JRA went systemic and almost killed me - the goal was always to get off of it.

Throughout my childhood, my parents were the ones who helped everyone else in the loosely organized support group for parents of kids with JRA, because I was the poster child for how bad it could be and that meant they knew more than anyone elsse. I was the one for whom medication either didn't work or caused side effects that meant I couldn't take it. I was one whose body was so screwed up by age 14 that I spent a couple years in a hospital bed waiting for hip replacements because my hips had fused and I couldn't sit anymore. When I did get the surgery, the goal wasn't to get me walking again. It was for me to be able to sit in a power chair so I could get out of the institutional setting and go home.

They say that if you get RA today, the chances of you ending up in a wheelchair are miniscule and in that way, I'm still the worst-case scenario. The one that people look at and shudder in fear that this is possible, that this disease can wreck you this much

And then there was another flare in 2004, another big one, another fire in my body that almost killed me. But this time there was another medication that worked and one that I can keep taking. A drug that gave me back my life and then another one like it that gave me back even more. Gave me the opportunity to pursue a lifelong dream, to build the life I always wanted to build and now, five years later, I am even somewhat successful at it. After 40 years of being the poster child for the worst that can happen, I find myself in a most unusual situation. Because now I seem to have become the best case scenario.

It is a concept that people find surprising, even confusing. They look at me, at my deformed joints, my restricted movements, the high levels of chronic pain, the wheelchair and all the rest and see only can't. See only the surface and assume the worst. But I am the worst-case scenario and the best case scenario, both at once, overlapping, shifting in and out of focus like a mirage depending on your perspective. From where I sit, this is not worst. This is best.

And there's more. For as long as I can remember, I have lived Under the Shoe. Lived with the knowledge that it could all change in a moment at any time. Lived with the undercurrent of dread that maybe tomorrow, the meds will stop working, the RA will come back and take away my life again. Nine months ago, I wrote about a shift in my thinking when I realized that for five years, I'd been doing well on Biologics and I dared to take the leap and believe that maybe, I could hope for another five or more, could stop living entirely in the moment and start planning for a future. It was a big shift, a scary shift, taking this step into having faith that the thread that held the Shoe would be strong enough.

But there is still more.

Earlier this month, I mentioned a forum about RA and I was there last Thursday, listening to Dr. Ed Keystone talk about RA in the past, in the present and the future (I’ll put up a link when they post the webcast, he's a fantastic speaker). Although I've known it in some way through my work on MyRACentral, it was this speech that made it all click on a personal level. I came close to tears more than once throughout Dr. Keystone’s speech and it took me a while to realize why. 

It was because his talk about the options that now exist, the nine Biologics on the market, the more that are coming and other types of meds still in testing gave me hope. And not the kind where you close your eyes, cross your fingers, base it on nothing but desperate desire. Now there is the kind of hope that is based in fact. The fact is there should the Humira stop working - this is terrifying to say out loud, so please everyone, knock something wooden for me - I have another seven options with more to come. And there is actual and real possibility - probability? - that should the RA come back and try to take my life away again, my medical team and I will fight back with all the weapons available to us and for the first time in my life, there are many. Which means that it will be more difficult for RA to entirely steal my life again.

For the first time in my life, the deep undertow of dread that has shadowed my days for as long as I can remember does not lead into a bottomless abyss. For the first time in as long as I can remember, hope is not a matter of blind faith, but an entirely reasonable notion.

It is the best of times.

17 comments:

Crafty Cripple said...

How wonderful to know that during the course of your disease such huge advances have been made.  I cannot begin to comprehend how much hope that would give you.  It's news like this that keeps me hoping for unmade advances to become a reality with my own disease.  Its been 10 years and still nothing, but you never know.  One day a bright spark may have a moment of genius that could change my life.  I know people who have had to live with horrendous pain all their lives, and expected it to continue, only to have the world turn upside down and a new development has given them a life they never expected to have.  It can happen.....it could happen to me.

Anonymous said...

Go LENE! And I misread your "like a mirage" as "like a marriage" the first glance--and in a way, it is.

I did not know they'd made that much progress on the biologics. I do know my daughter looked over the research on the Humira two years ago and from the perspective of an immune-system researcher said, "Wow. These guys really did their homework."

Cathryn said...

Your post is very inspiring.  My family is going through a very hard time right now, and you just gave me the fresh breath of hope I need to get through it all.  Thanks.

Kitten said...

what I'm waiting for is the drug or therapy that regrows your messed up joints so you can get on a plane and come see me.+

Anonymous said...

What a huge turnaround in the treatments for RA, and what wonderful news!

Anonymous said...

What a wonderful shift in paradigm. (I knocked three times on my head for you... it is very wooden with fibro fog this week, but better today than yesterday)

Diana Troldahl said...

Sorry, the wooden headed guest was me

Becky (knittingyoyo) said...

You are my hero. Your love of life and indomitable spirit are a powerful influence.

Lene said...

All my life, I've focused on how to live with RA, because I knew they wouldn't find a cure - or meaningful treatment - in my lifetime. To realize that not only are there so many options in terms of treatments as there are now, but that we are also close to being able to turn it off, at least with people  who are early in the disease, is mind blowing, overwhelming and... well. Mind blowing.

I hope the same will happen for you.

Lene said...

heh. ;)

I know very little about the ins and outs of the specific meds, but in terms of how it works? Yep. They did their homework.

Lene said...

I'm glad to hear it. I hope your hard time eases soon.

Lene said...

OK to, now I'm blushing...

Lene said...

this week is hard for the fibro - I was a zombie on Monday. Thanks for the knocks! ;)

Lene said...

at that forum last week, Dr. Keystone talked about a specific treatment that had actually seem to heal joints and allow them to regrow cartilage. blew my mind. Who knows - maybe someday, I'll show up on your doorstep.

Lene said...

It really is.

Elizabeth Mcclung said...

I am glad to have been able to share this life pivot you explain so well.  Instead of the the road around the curve always being the end of the road, now, there are all sorts of different pathways around the curve.  It is a good time.  I am glad the fear, the survivor's outlook may slowly start to ease away - I wonder what giddyness will replace it?

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