Waking Up

I think my Enbrel is working. I think, because I don't want fate to turn around and bite me. But still.

I spent the six weeks before my first injection directing a class of second and third graders through A Midsummer Night's Dream - essentially the brightest thing to happen to me in a very very long time. Though my endurance built over that period, it was still excruciating to last even a couple hours with them. But because I love them, I decided I wanted to go back and keep helping in the classroom now that the curtain has closed.

This gives me a unique opportunity to gauge just how much the drug is helping me, and the comparison between rehearsals two weeks ago and being there today is like night and day. I went four hours without feeling like I needed to lie down at all. And that's huge. Moreover I haven't been lying down much since I got home - another milestone.

I feel like now I can start counting hours in bed instead of out - because it's less. It's insane. I don't know if my mind is fully grasping what is happening yet, but I'm going to start weaning myself off of the anti-inflammatory just to prove I'm right.

And if I am, life is good.

photo credit: http://f00.inventorspot.com/images/sleep_2.jpg

Disjointed

In the middle of October, a system-wide onslaught of joint pain suddenly appeared in my body, creating pseudo-injuries in all of my major joints. Aside from my obvious spinal weaknesses, I have been largely pain-free, and so it was confusing when suddenly my wrists, knees, ankles, and hips all required daily icing. After four months of blood tests, MRIs, and supplemental specialists, I've been handed a new diagnosis: Ankylosing spondylitis.

Ankylosing spondylitis (AS) is a form of spinal arthritis that begins in the sacrum before moving up the spine and into the large joints. It is genetic, auto-immune, and incurable (though not untreatable). This diagnosis explains almost all of my symptoms, including the sheer amount of time it has taken me to get better. It also maps out treatment options, something that "undiagnosed chronic post-operative pain" does not do. My first treatment plan is Enbrel, a relatively new drug that in its ten-year lifespan has already earned a reputation as a miracle cure. Best case scenario, weekly injections reduce all my symptoms to zero and my life goes on.

The catch is that AS is part of a family of diseases called spondioaropathy (which includes such illnesses as IBS, Chrone's, and psoriasis), and Enbrel is a drug created to fight rheumatoid arthritis. While it is extremely effective in combating the inflammatory aspects of AS, it has no effect on the worst case scenario - in extreme cases, the ligaments in the spine calcify and, essentially, the spine fuses itself. This fusion can then move into the larger joints. A drug has not yet been invented to fight this.

But, that's worst case scenario. They caught mine early, and because Enbrel slows down and fights the inflammatory process it is highly unlikely that the fusion process will begin. Or, by the time it does, a drug will have been created which combats this particular part of the disease. Either way, thanks to the remarkable success Enbrel has had in treating arthritic conditions, auto-fusion is not considered a looming possibility in my case.

I started my course of Enbrel a week ago, and so far, I have not felt a drastic effect. I have noticed more good mornings, but they lack continuity and so my confidence is shaky. I'm hoping for a drastic hallelujah moment telling me that the drug has worked, but I don't know what will happen. We shall see. Either way, a diagnosis is gratifying, because after months of shooting in the dark there is a path - and all I have to do is follow.

photo credit: http://www.duluthfishdecoys.com/images/DFD_15_inch_double_jointed_northern.jpg