Uninspiration

I can remember when I first starting getting better, when I started writing this blog, constantly feeling like I had something to say. I've been searching my self for that inspiration again, but I consistently come up empty. It's like my setbacks block my desire to reach out into the world - or that, subconsciously, I don't want this chapter recorded for posterity. Tracking my triumphs was so much more satisfying than posting updates on my continued misery. It jerks me out of my bubble of denial - and forces me to confront the fact that I'm an invalid.

When I first went on bed rest, I deliberately stopped thinking about the future. I thought about one day, one week, and beyond that I left my life in the hands of the forces beyond my control. It kept me from sinking into the dark place, because when I didn't know what I was missing, I didn't feel as sad. But when my Enbrel started working, I suddenly was imagining where I could be in a month, or six months, or next year. Then some idiot slammed her car into mine, and here I am.

I'm tired of being sick. True, I guess I've always been tired of being sick, and I guess everyone who has a chronic illness is tired of being sick. But I'm twenty-one years old, stuck in my house with the same three angels every second of every day for the past eighteen months. I seek inspiration. I seek something, anything, that awakens in me the knowledge that I could be happy, someday. However, I feel that I have run out of places to look. Today, I made myself breakfast alongside my sister's closest friend, and found myself carrying on a conversation with my dog instead. And while she is a lovely beast, is it so bad to want more than a canine sounding board and a subscription to Netflix?

photo credit: http://jsam.best.vwh.net/images/manipulated/jsam-head-implode2.jpeg

Life, Or The Lack Therof

As a relatively new arthritis patient, I have been exposed to a proverbial deluge of information explaining how I can carpe diem despite my disease. Articles and pamphlets on exercise regimes, diets, or drugs and internet support groups galore are telling me that no matter how bleak my diagnosis, I can still live a full and happy life.

Which is comforting, seeing as I have been doing a lot of that lately.

I sometimes feel like there are too many therapies in my life. Even on the days when I am not at the doctor, my time is eaten alive by physical therapy and pain management regimes, not to mention an anti-inflammatory diet and a rigid sleep schedule. Even though technically I'm "lying around all day", it's not very relaxing.

Every now and then, I think about what I'll do, one day, when I'm free. Depending on how much I'm willing to delude myself about my physical realities, I can imagine myself in all sorts of places and doing all sorts of things. When I pull myself back to the present, though, I know that most of those ideas are impossibilities. That's when I wonder what I'm fighting so hard every day to attain.

Will most of my life be a beta version of this?

photo credit: http://tomhilgardner.files.wordpress.com/2009/08/stuck-in-a-rut-dog.jpg

Volver

Car accident recovery is not going well. Two weeks ago my sciatica suddenly reappeared, and I can't figure out why (other than the blatently obvious reason) or how to quell it. To me, sciatica represents everything I've tried to defeat in the past couple of years, and having that symptom back is depressing in the extreme.

This is my first major regression. Prior to the car accident, I was almost better. I was literally almost better. I had just started thinking about plane rides and road trips and everything else I didn't let myself think about during my time in bed. An inability to follow through on a dream highlights the fact that I'm an invalid, and I've actively resisted making any plans at all while I've been in bed. Now, that dam has burst, and the resulting letdown is almost more discouraging than the symptoms themselves.

I don't know how many more hurdles I will have to jump before I'll actually get to jump. I'm really really sick of everything going wrong.

photo credit: http://blogs.lib.uwaterloo.ca/librarian4math/files/2009/06/frustration.jpg

Children

In January I was recruited by my former teacher to help with her class in their annual play. I quickly assumed the role of director and ended up managing all acting components of the production, which kept me out of bed at least two hours per day five days a week and I believe is a large part of my increased endurance prior to the car accident. Additionally, the kids became My Kids and continue to light up my world as often as I can manage to visit their classroom.

I don't know if this makes me egotistical, but suddenly earning the respect of forty children and holding the responsibility of their performance made me understand that I held some significance in the world. I have often felt forgotten and dispensable in the past couple of years; very few people have the capacity of sitting bedside to a convalsecent, or at least that's what I tell myself. But seven year olds don't care if you're sick as long as you love them back. They carried my chairs and picked up my pencils and never needed to know any details, and I felt like a real person.

Somewhere in the middle of doing fairy makeup and memorizing a shortened version of "A Midsummer Night's Dream," I started to understand that some semblance of my old self would still exist when all of this was over. I only feel this way when I'm with them, but my physiatrist says that I have to start taking my symptoms out into the world in order to get better. Right now, there is nowhere I would rather be than in their classroom, attempting to explain black holes without algebra.

Sideswept

My sister and I were in a minor car accident ten days ago. Some apparently legally blind woman in an SUV ran a stop sign and caught the back door of our Prius. Even though neither of us were severely injured, my back injury has been exacerbated to the point that I'm temporarily back on bed rest.

I'm borderline livid. I feel like I had just gotten my "life" pieced together and then, wham, now here I am in bed again. We are hoping that the recovery will be a fastforward version of the one I've been living through, but right now I just feel reinjured. Plus, we now get to deal with the lovely world of auto insurance. Yay.

I am grateful that things are not worse than they are. For example, a slight difference in MPH and that SUV would have hit my door and I don't know what would have happened to me in that case. However, I feel like god or fate or whatever is pointing at me and my family and laughing maniacally.

So, The Plan. Things have been scaled back to six months ago. I dropped my film class to redevote myself to physical therapy and so that I can retreat into my bubble of denial. I'll be seeing all my specialists to document all of this, and I'm back to upwards of four doctors a week. Hopefully we can do this faster this time. If not - well, fortunately, they make movies every year.

photo credit: http://image.motortrend.com/f/auto-news/smart-fortwo-has-impressive-iihs-crash-test-result/9861948+cr1+re0+ar1/2008-smart-fortwo-iihs-side-impact-crash-test.jpg

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