Central Sensitization, Chronic Pain, Creative Writing, eating disorders, Favorites, Inspiration, My Story, Sacroiliac Joint

Healing our bodies, and the things that ripple across generations

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A little over a year ago, I started a second blog to focus on what I’d come to think of as this weird hip problem I’d had for years that no one seemed to understand (sacroiliac joint dysfunction).

Among friends, I usually tried not to talk about it too much, because I didn’t think anyone else would want to hear about it.  Sometimes I wondered if it was all in my head, since so many of the doctors and physical therapists I’d seen didn’t seem to know what I was talking about.  I was embarrassed to tell people about it, since only my chiropractor seemed to believe it was a real problem (and you know how skeptical I am about most things alternative health).

I started My Sacroiliac Joint Saga one warm day in May.  I’d had an absolutely awful day, and was just about reaching my breaking point with this problem and thinking I might need surgery.  I didn’t really think anyone would want to read what I wrote, but I left it set to “public” just in case.

But a funny thing happened.  Once I actually gave myself permission to focus on the issue, instead of judging myself for it, I found I had a lot more time to problem solve.

I used the mental energy I’d once devoted to questioning myself instead to research the problem from every possible angle.  Not everything I read was helpful to me, but by giving my full energy to the problem, instead of wondering if I was crazy, I ended up finding the answers I needed.

And it turned out there were people out there who were familiar with this problem– patients who had experienced it themselves, and doctors and PT’s who treated patients with it, and were even contributing to research on the problem.  I just hadn’t had the luck to come across any of them.  Looking back, I think the reason why is that I stopped searching too soon.

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Last spring, I wrote a post called “Inner Limits,” about how I was coming to realize my past with an eating disorder was haunting me more than I knew.

Internally, I had set certain limits for myself on how much time or energy I was willing to spend focusing on fixing a “problem” with my body, and so I held myself back.  I did my exercises, I went to the chiropractor once or twice a week, I maybe read one or two articles a month on it, but that was it.  Other than that, my main focus was sticking to my routine, as if pretending I didn’t have a problem could somehow limit the effect it had on my life.

But really, as I wrote in the post, there was more I could do.  I could do more exercises; I could do more stretches.  I could spend an hour a day researching, if I really wanted to.  I had the time… for some reason, I just wasn’t.  Because I was afraid to devote my full attention to it.

Funny, right?  Here I’d been working on this blog about my journey with central sensitization, and how much it took me to find answers for it, and how for so long I’d felt misunderstood when I had a legitimate medical issue.   One of the main messages of Sunlight in Winter has always been “Believe in yourself.  Your pain is real and you deserve help.”

And yet here, the same patterns were playing out with my sacroiliac joints.  Deep down, despite what I’d already been through, part of me was still afraid that if I fixated too much on my body, and trying to “change” it, it would trigger the same level of obsession that drove my years of starvation and overexercising.  So I held myself back.

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I haven’t written much about my family history on this blog, and I probably won’t say more than this anytime soon.  But in the past few years, I’ve come to realize that some of these thought patterns of self-doubt didn’t start with me.  Often we learn them from somewhere– usually, consciously or not, from our families.  These patterns can be passed down, and I think they very much were in my case.  There were things that happened in my family long before I was even born, that sent out ripples across generations.

I realize now that I have been on a long road– not just with my health, but with learning to believe in myself; to trust myself.  There were events that occurred in my family, long before I existed, that have affected my life and my ability to believe in myself.

Now that I’m aware of how the past has been affecting me, I’m learning to see things differently; to create my own future and way of seeing things that’s healthy, and works for me.

I won’t always be able control what my body does (I’m sure anyone reading this blog can relate to that!).  But I can control the way I see myself, and I don’t have to let health issues affect my self-perception.  Just because a doctor can’t give me an answer for something, it doesn’t mean the problem is in my head.  It doesn’t mean my problem isn’t real.  I can’t make a problem worse by “dwelling” on it when what I’m actually doing is researching and trying to find answers.

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I don’t believe that everything happens for a reason.  I believe that, most of the time, the best thing we can do is to try to make meaning out of something for ourselves, whatever that turns out to be.

I don’t know if all my health issues happened for a reason, but now that I look back, I  know this common thread was there all along.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.

All of these problems were real; all of them were hard to get diagnosed, and hard to find the right treatment.  But for each problem (and I know I’m fortunate in this) there were eventually answers out there.

I know this is not true for everyone who writes under the “Spoonie” banner, but for me, my major health issues have all turned to be manageable.  There were answers out there, and I probably would have found them sooner if I had taken myself more seriously, and believed in the possibility of finding answers.  Or, I should say, the possibility of being understood.

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Over the past weekend, My Sacroiliac Joint Saga hit 10,000 total page views.  I still can’t believe this blog I started a year ago as a somewhat embarrassing side project has grown to this extent, and helped so many people.  (And I know this because of all your kind comments and messages– thank you!).

And, aside from page views, 2016 Me still can hardly believe how fortunate I’ve been to finally find answers to this problem.  When I was at my breaking point that day in May, getting better wasn’t something I could really even picture.

So let this be a reminder to me, and to you if you’re reading this, to never let our health issues change the way we see ourselves.

We are so much more powerful than we realize… we just have to be able to see it in ourselves.

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Chronic Pain, Creative Writing, eating disorders, Favorites, Inspiration, My Story

I only understood myself…

A few days ago, I went for a walk around this beautiful historical estate that’s practically next to where I live now.

I’ve been making some big changes in my life recently, and some of them have been pretty difficult.  This park feels like home to me, so I went there to clear my head.

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I walked around for a little while, and then stopped to lie down on the grass.  It was so peaceful, in the warm sun.  I just wanted to take in the moment.

And then I looked up, and saw this view:

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Suddenly, it hit me.

I thought back to the days in high school, before I got compartment syndrome, when I would have been here running.

Rushing, rushing, hurrying, going as fast as I could.  A high-intensity day. Three miles, in as little time as I could.

Or maybe it would have been an endurance day, and I’d be purposely holding myself back for the first few miles, so that I could stretch my run out to six or seven.

I loved running.  I loved pushing myself, the freedom.

But you know what I wouldn’t have been doing?  Looking around me.

Looking up, specifically.

You can’t really look up when you’re running, at least not when you’re outside.  You have to look at the ground almost constantly, to make sure an awkwardly-placed tree root doesn’t leave you on crutches for the next two months.

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I loved running.  Everything about it– the thrill of pushing myself, the endorphin rush, the adventure of being outside.

But it was always a blur.   Even when I ran through my favorite places– and I knew some beautiful trails– I was never able to stop and enjoy it.   In my head, it was keep going, keep going.  You have to burn calories.  You’re going to get fat.

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I could never pause, never rest.  Even on Sundays, when my coaches made all of us promise not to run… I tried to go for walks, but I just wanted to be running.

I’d be in the middle of the most beautiful nature scenes, and all I’d be able to think about was how hungry I was.  And how fat I was going to get from not running that day, from the meager calories I’d decided to allow myself.

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Things are so different now.

I can’t do the same things with my body that I used to, but I can look up.

I can go to a beautiful place, without having to spend almost the entire time staring at the ground.  I can stop if I want to; I can pause.

Don’t get me wrong; I will always love running, and exercise in general.  I love a good endorphin buzz even more than I love coffee in the morning.

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But I exercise now because I want to; not because I’m afraid of what will happen if I take a day off.

It’s such a crazy feeling, and I don’t know if anyone who hasn’t been through it themselves can know what I mean.

I know what it’s like to have the ability to pause, because at one point I lost it.

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(Check her out, she’s an amazing writer!  http://sadeandriazabala.com/)

Favorites, Fitness, My Story, Sacroiliac Joint

Building Back My Muscle Strength

The more knowledge I’ve acquired about the human body, the more I realize that most of the problems I have now are due to lack of muscle strength.

When I developed compartment syndrome at the age of seventeen, it was due to over-training for the spring track season (combined with the fact that I had an eating disorder, and was also starving myself).

But everything since then—that’s all been the indirect result of muscle weakness.

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I first learned about the concept of muscular atrophy when my friend fell in second grade gym class and broke her arm. I remember the gym teacher telling us then (after the ambulance had taken my friend away) that when she got her cast off in a few months, her arm would look small and shrunken compared to the other arm.

The teacher explained that when you don’t use a muscle at all for a very long time, your body lets it get weak because it doesn’t think you really need it. And that it can happen quickly– really quickly. That it would take my friend a lot longer to do these exercises to build her arm back up than it had taken for her muscles to get weak with the cast on.

That concept—atrophy—scared me so much when I first learned about it then.

But when it actually happened to me, following my leg injury, it was gradual. I didn’t really notice the rest of my body getting weak, because it was overshadowed by the pins and needles in my lower legs.

If I could go back in time, I would have worked out in a pool every day, so that I could I maintain all of the other muscles in my body I wasn’t really thinking about– back, shoulders, trunk/core– despite the fact that I couldn’t really use my legs.

I didn’t actually feel the atrophy as it happened. I felt like I was choosing not to use my body to do certain things because of the pain in my legs, not because of weakness.

But when I threw my back out, a month after my leg surgery—that probably wouldn’t have happened if I hadn’t come so weak.

And that, in turn, is when my nervous system really went crazy—which of course, started off its whole chain of problems, which of course my regular readers already know about.

But I’m coming full circle now.

I’ve addressed the pain—or, more specifically, learned how to address it. (This process of learning to manage chronic pain—it’s not something you do once and are done with. It’s about learning how to think. The knowledge that the more you feel you have control over what’s happening in your body, and that you truly understand what could be causing the pain—that’s an equilibrium that you must continually strive towards and re-create).

And now I see the underlying problem– that I am weak. Less now, of course, now that I’ve been working out in the pool for so long. But nowhere near as strong as your ordinary, average person who might not work out regularly, but has never had an extended period of time where they had to stop using their body.

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When I first started to voice my idea of becoming a physical therapist, there were actually quite a number of people who discouraged me.

“But it’s such a physically demanding career,” they would say. “Can you do that?”

And yes, I’ll be honest—sometimes that question makes me a bit nervous too.

But there’s no reason I can’t get strong again. I am lucky not to have anything wrong with me that is permanent. I just need knowledge.

When I took Kinesiology last summer, that was the point at which everything started to click for me. I learned about the motions each joint of the body can perform, and how the different muscles work together to produce that movement.

I started to understand why some of the exercises I’d been doing hadn’t helped that much, and I actually began to see holes in some of the exercise programs past physical therapists had given me.

I realized how specific muscles can be.  Especially relevant to my case were the muscles of the back and shoulders. You can be doing two almost identical motions with your arm, but a ten degree difference in the angle your arm is at can completely change which back muscles are working.

I’d never known things were that specific. I’d always progressed through my back exercises based on my level of pain, doing the easiest, least painful exercises first, figuring I’d work up to doing the tougher ones after a few weeks.   What I know now is that those easy exercises were never going to prepare me for the harder ones, because they simply weren’t working the same muscle groups (despite how similar they all seemed).

It’s frustrating– I’d always told my physical therapists what I was doing, and none of them ever warned me the plan might not work.

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Part of the problem, I believe, is the physical therapy model (at least, in the United States) where the therapist can only focus on one specific diagnosis or part of the body at a time. This means that your physical therapist has to send you back to your primary care doctor, to get a new prescription and a new insurance authorization, just to be able to answer a question about a different part of the body than what they were treating.

Now, all the PT’s I’ve seen haven’t been like that. But there were enough, over the years, that I’m sure it cost me a lot of potential progress.

All of my various diagnoses had the same underlying problem—I was weak and extremely out of shape.  My whole body was the problem, not just one part.  Treating each problem one by one wasn’t going to stop the next problem from developing.

I have a great physical therapist now, who is able to think abstractly, and answer all of my questions about strengthening various parts of my body. And that is the kind of physical therapist I would like to be for other people.

The type who understands that strength is important—overall strength. And that you aren’t really helping the patient if you help them strengthen one part of your body, but leave the rest totally weak.

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So now I’m strengthening everything.

The problem is not, primarily, my sacroiliac joint (although that’s obviously what causes me the most grief right now).

The problem is that my muscles are not strong enough to hold my sacroiliac joint securely into its proper alignment.

I’ve had to completely change how I think about my physical problems. When I work out in the pool, I’m not just focusing on fixing my SI joint, or my knees.

I’m troubleshooting.

I’m strengthening everything. Every major muscle group, and every major joint motion. (At least, as best as I can).

I’ve finally broken through the mysterious veil of pain that clouded everything I did, and made me afraid, and made all my physical therapists think I needed psychotherapy.

And now I’m back.  I’m building myself up, back to the level of strength I should have had all along.

 

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A moving response to the Boston Marathon explosions, from comedian Patton Oswalt.

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A picture of Boston from the harbor, on a better day.

This was originally posted on Oswalt’s Facebook page.

“Boston. Fucking horrible.

I remember, when 9/11 went down, my reaction was, “Well, I’ve had it with humanity.”

But I was wrong. I don’t know what’s going to be revealed to be behind all of this mayhem. One human insect or a poisonous mass of broken sociopaths.

But here’s what I DO know. If it’s one person or a HUNDRED people, that number is not even a fraction of a fraction of a fraction of a percent of the population on this planet. You watch the videos of the carnage and there are people running TOWARDS the destruction to help out… This is a giant planet and we’re lucky to live on it but there are prices and penalties incurred for the daily miracle of existence. One of them is, every once in awhile, the wiring of a tiny sliver of the species gets snarled and they’re pointed towards darkness.

But the vast majority stands against that darkness and, like white blood cells attacking a virus, they dilute and weaken and eventually wash away the evil doers and, more importantly, the damage they wreak. This is beyond religion or creed or nation. We would not be here if humanity were inherently evil. We’d have eaten ourselves alive long ago.

So when you spot violence, or bigotry, or intolerance or fear or just garden-variety misogyny, hatred or ignorance, just look it in the eye and think, “The good outnumber you, and we always will.”

Thank you, Mr. Oswalt.  Your words have expressed what many of us are feeling today.