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