Delayed

I have been hesitant to write lately. I feel like a lot has changed in how I view the world and how I view myself, and without a clear definition in my head it is difficult to describe the shift. However I would like to outline a few things.

#1: Summer Camp
Since I was eight years old, my mother, sister, and I have been attending a performing arts camp every summer that, over the years, became the defining entity of my life. It is also the first (and only) thing, other than my mobility, that I truly mourned the loss of when I got sick. Thanks to some wonderful administrators and my indescribably fantastic physical therapist, I made it back to camp this year. I spent July preparing myself physically and mentally, with new exercises designed to increase flexibility and fluidity of motion and an understanding that, despite the risk and whatever pain I would incur over the week, it was vastly important for my mental health that I go. I nearly chickened out at least three times, and when I arrived there I was visibly shaking. However as the week went on, I was able to let go of that fear, and I discovered that I did not have to think of myself as injured - I had the tools and the strength to take some risks. The last thing my physical therapist said to me before I left was, "don't not do anything you want to do," and I took that philosophy to heart. By the last day, I felt as like myself as I have felt in a long time. I did not feel like a sick kid anymore. I just felt like me.

#2: Living in a Post-Camp World
Since I returned I have been trying very hard to not be bored, which is difficult when one is isolated from the world. But regardless - I'm trying. I'm joining classes at the rec center and a community chorus, prepping for our new puppy, teaching my kids performing arts, and training with my physical therapist - who, upon my successful return, has decided that she and I are going to complete a sprint triathlon together just as soon as we're ready. I'm also trying to get out of the house as much as I can, and I aim to get my driver's license by the end of the year.

#3: Transitions
As I left camp, someone told me that perhaps what I needed was to stay incredibly busy. I told them, no, that's not quite it - what I need is to be engaged in things that make me happy. I'm trying very hard not to think of myself as someone that is sick. I'm trying not to live my life around my pain. When things hurt that's still really hard, but there is a direct correlation between how happy I am and how much pain I am in. Therefore I want to live my life with that in mind.

I will probably be renaming this blog. One of my friends told me, a long time ago, that the title could (and should) be something transitory. Perhaps I wouldn't be this way forever. Either way, as I go out into the world, I would rather concentrate on the good than the bad - and not on the part that could make me an invalid.

photo credit: https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqHnmr6_kqrwVAMMcAh-0yEpuSCvadJmRRdlh9Kt1xG0-Uz52FYSw97BQdsVuKWZAxzBrLwnTeOfzO8psjf-CVtGwBjgBxiRUZlYMAzxs9k66YaHiAcWGU8qgicggPfTUHh1Wva30cweeY/s400/Freedom85_4.jpg

Swim A Mile

Taken from my Swim A Mile profile:

I first completed the Swim A Mile in 2007 just after beginning my attendance of Mills College. At the end of that school year, I became housebound with a crippling back injury that has led me through a surgery and a year of bed rest to an arthritic diagnosis and the long recovery I'm currently trying to wrap up. I'm hoping that my life will begin again soon, but I want to start reaching out into the world now. Because I have rediscovered my ability to swim, and because it is such a good cause, I could not think of a better full circle moment.

The Swim A Mile is many things to me this year. It is a mark of my own progress, and a hallalujah moment, but most importantly it is an opportunity to raise funds to help fight a crippling disease. I can't raise money swimming for my own illness, but I can feel good about bringing help to so many who need it. I am so excited to swim.

I hope that you can support me with a pledge, large or small. But even more so, I hope you can come out and watch me swim at 11:30 on Saturday, October 2nd at the Mills College pool. I intend to bring as big a crowd as will attend to witness this huge step in my life. I hope you will join us.

To donate, please visit this webpage: http://wsdvps4.wsdsecure.com/~wcrc.org/profiles/search. It will ask you for my nickname which is juliathollaug.

Thanks.

photo credit: http://neoneocon.com/wp-content/uploads/2008/04/suit_swim.jpg

Goal Tending

One of the main components of my attitude adjustment involved a shift in strategy at physical therapy. Instead of progressing slowly and letting my body fully acclimate to each change in my program, I asked my PT to push me really hard - to up reps and weights and lap numbers as fast as she deemed safe. I wanted to find a way to create at least an illusion of accomplishment for myself on a regular basis, and that plan has worked better than any of us imagined.

In the past six weeks, almost all of my capabilities at the gym have doubled. I now spend six hours at PT - up from my old standard of four. Consequently I am far stronger than I was, and am able to spend more time out of bed. I'm trying to set higher and higher fitness goals to work toward - right now, the end goal is a triathlon (because what couldn't I do if I could complete a triathlon?). I think that I couldn't ever be too strong considering the body I have to work with. The bones I can't control. The muscles, however, are another story - and the stronger my muscles are the less my skeleton will have to work. Hopefully now I can just keep getting stronger, nothing else bad will happen, and my life will be back before I know it.

I'll keep you posted.

photo credit: http://farm1.static.flickr.com/26/52660486_6ca085f7a8.jpg

Rose Garden

In my most recent Enbrel mailing from Pfizer, I found two articles clipped from "Arthritis Today." The first, which I found unremarkable in its simplicity, concerned exercise as a catalyst of health and pain relief. The second, however, captured my attention, for it detailed a recent study proving that exposure to beauty can lessen chronic pain. Specifically: when the pain is bad, one should seek out and look at something beautiful.

I don't know that I bought this fully when I read it. I believed it could have some merit, but I didn't intend to keep it in my arsenal of pain relief techniques simply because it seemed too simple. It can't be that easy, I thought. It shouldn't be, after what I've been though. That would not be right.

Today I went to the park with my cousins, and after rejecting the entry fee to the science museum my mom and I proceeded to wander through the groves and gardens aimlessly. I looked at this adventure as two of my three walks and an appropriate exercise in endurance, but as boredom set in my sciatica happily joined it. Frustrated, I found myself in the rose garden, solely with the intention to kill time in a place that I had formerly loved. Then, after twenty minutes of rose-viewing, my sciatica was gone.

I love roses. I have a thing for color, and immersing myself in swirls of vivid petals is my idea of a good time. I did not notice anything happening, nor did I believe that I would feel better - I had, in fact, resigned myself to blindly coping with the pain until I had access to an ice pack. But when I consciously thought about my body again, my leg was beautifully clear of pain.

I have an insane disease. I often liken it to the hydra - cut off a head and three more grow in its place. Today I learned a valuable lesson - when you are dealing with pain of mythological proportions, there is no room for cynicism. Especially when a proposed solution is as simple as opening an art book and soaking in Monet's brush strokes. Every little bit helps - even if it is as small as a flower.

photo credit: http://www.mooseyscountrygarden.com/rose-garden/pink-garden-roses.jpg

Endorphins

One of the perks of being someone's chronic patient is that, if they're good, they develop a vested interest in your recovery. Any knowledge or technique or idea they come across that might help you is flagged, bringing dimension after dimension into the treatment plan. This constant influx of information has helped me achieve step after step in my recovery, and one of the most epic is the idea my acupuncturist brought back from a seminar two weeks ago - a supplement of amino acids that replenishes endorphins in the brain.

From what I understand, chronic pain wears away healthy endorphins - which support a happy mindset. Thus, when slipping into a chronic pain cycle, replacing these endorphins can lift someone's spirits and help break the pattern in the brain and nervous system. Essentially, this functions as an anti-depressant AND a way to break the chronic pain cycle.

Since beginning this supplement, I have noticed a radical change in my outlook on life. Not only am I happier and more motivated to get well, but I find myself functioning with less fear and pain despite the fact that I am out doing things and working harder than ever at PT. It is night and day from two weeks ago. I never imagined there could be such an extreme shift in my life.

For all interested parties: DL-Phenylalanine. Czech it out. I still have a long way to go, but things are looking up.

photo credit: http://www.truthbehindmysmile.co.uk/wp-content/uploads/2009/08/happy-face-ball.jpg

The Pain Center

This week, in my continuing quest for answers, I found myself at the Pain Management Center at Stanford. There I met an extraordinarily condescending pain specialist who seemed to lack both empathy and an ability to compromise. After shooting down all my current (effective) drug therapies and pointedly asking why I felt the need to visit her clinic, she sent me away with a prescription for a multi-disciplinary conference and an order to not change any of my treatments until further notice.

Should I choose to proceed, this involves three more evaluations, three more MRIs, a two stagnant months. While the idea of many doctors collaborating on my case is appealing, the amount of doctor time required of me is daunting. Part of my current plan is to cut out as much medical stuff as I can and try to live. Going to Stanford seven times in the next two months does not jive with that plan.

Additionally, one of my intake forms was a three pager that released them from any liability should I become addicted to prescription medications. Yes.

However, the problem here, in my mind, is not the form, or the amount of evals, or the tests, or the time, or even the fact that she sent me away without even ONE idea of something I could try. The problem here is that I already have a physiatrist, and a physical therapist, and a therapist, and a bajillion other people who already know my case and my body and who all report to essentially the same guy. Everything The Pain Center wants me to have I already posses. Therefore the two months I would spend waiting for them to come up with a drug regimen would not only be long and painful - it would be redundant. And I do not do well with redundancy.

I am sick and tired of going to the doctor. It has been my whole life for more than two years. I am not going to blindly accept that this whole new roster could help me, because I just want to be done. In this case, less is more. I will not be returning.

photo credit: http://hkham.files.wordpress.com/2009/04/hm36drugs-are-bad-posters.jpg

Mind Games

My attitude adjustment, it appears, is not invincible.

I had my wisdom teeth out ten days ago. It has been on the to-do list for a while, however once the teeth dislodged my retainers and caused my gums to swell removal was moved to the top of the triage list. It was horrific timing, as I was just wrapping my head around fighting a chronic pain cycle. Suddenly I spent a week on bed rest chugging vicodin and waiting out the recovery. On the other side, the lack of Enbrel and exercise has destroyed my body. I feel as bad as I did a year ago, plus withdrawal symptoms.

The first few days were okay. I congratulated myself on coming so far that I could endure a procedure like that and stay stable. But as the pain set in, I lost the ability to find a positive angle. I struggle to find one now.

In the past, I was able to hold my head together because I truly believed I could learn something from the experience. I bided my time and sorted through my head and worked really hard and I grew into someone really healthy, not just in body but in mind, more so than I've ever been. Then I was hit. Now the pain really isn't my fault, and everything seems out of my control. I can't reverse anything, or cope with anything, and, for the first time, I feel truly powerless.

I don't know how to believe that I can achieve my previous level of health now that it has been so thoroughly destroyed. Knowing what such a process requires of me, I don't think I want to start over. Now that this has become a mind game, my head is no longer my own, and I have nowhere to retreat. Perhaps the last mental barrier I must defeat is my fear of confronting my pain head on - though I thought that's what I've been doing this whole time. I don't know if I can live in a world where I have to live despite the pain; it seems that living without pain is no longer an option.

And that is one hell of an attitude adjustment.

photo credit: http://archive.student.bmj.com/issues/08/03/life/images/view_3.jpg

Recycling

About two weeks ago, my general prac put me on my first ever narcotic pain regimen. The drug of choice, kadian, is essentially time-released morphine, and although the first couple days were amazing my system subsequently crashed. The goal was to break the pain cycle and allow myself time to gain back the strength I've lost since the accident, but the experiment backfired because instead of feeling better, I simply felt sick in a whole new capacity.

I broke off the narcotics after a week, and instead of going on oxycontin I've elected to proceed with codine and an attitude adjustment. My physiatrist says that he fears I am slipping into a chronic pain cycle, in which the mind tells the body to feel pain when in fact nothing is wrong. This transition is incredibly difficult to undo, and I intend to fight it with everything I have. But now, I'm fighting my own head. Fun.

My physiatrist's main strategy for me is that I should provide my nervous system with other things to focus on besides pain - such as sixty second graders drowning in "A Midsummer Night's Dream." But now that the school year is over, I must find new and equally engaging activities to distract my shredded nerves. Thus, I propose something to the world.

I have always loved visitors, however despite my winning personality I haven't had that many (those of you who have come, know that I appreciate it more than I could say). I understand that people's lives are full and stressful, and that I live in the boonies, but I have been in my house and at the doctor - almost exclusively - for two years. Step up, people, because this part I cannot do alone. I need distraction. Prove that life is out there waiting for me.

photo credit: http://filipaqueiroz.files.wordpress.com/2009/02/escape-key.jpg

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