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Creative Writing, Favorites, Inspiration, Uncategorized

A Returning

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“I have been away.

I have often thought of how to begin this blog again after a long hiatus and then more time would pass and there it stood waiting for me to speak, write, and reach out.

The reason for my silence is the same reason for beginning this blog. Living with chronic illness permeates everything we do. It is the scaffolding of which we build each day. It determines our daily plans, what we take on, and what we leave unfinished. As I dedicated each day to doctor’s appointments, physical therapy, medication changes, and rebuilding my life after a health storm, this unfinished blog provided comfort knowing that it was a place for me to return.

As the months passed, I was forced into long stretches of bed rest, breaking from work, my passions, the world, and my voice. This is the cycle, after all, of the chronically ill. It is a sequence of retreat and victory, of silence and stories, and of mining the telos of one’s spirit.  What incites us to account our narrative to others relegates us to silence in other moments in a life lived with chronic illness.

I have to admit that at first my silence was “put upon” me. I was so engulfed in pain, fatigue, and just getting through one hour after another that I had no desire to communicate about the latest health trial. Yet, resignation turned towards choice, as I again reimagined and redesigned a future. It is a truth we face when dealing with an incurable disease that we must rewrite our future story after it is continually malformed by our bodies.

The poet Carmen Tafolla wrote: “I was the fourth ship. Behind Niña, Pinta, Santa María, Lost at sea while watching a seagull, Following the wind and sunset skies, While the others set their charts.” This post is dedicated to the future, to the reciting of a livable future, and to exploring the why in a life filled with medical chaos.

Illness is an invasion of identity. Since living through surgeries, a nine medication regimen, and too many medical procedures, I have searched for an explanation, a pathway, and a satisfactory answer to why. Why did this happen? Why me? I have done everything from pretending that the illness part of my life is nonexistent to studying the mechanisms and pathologies of the body; nonetheless, illness continues to lead its assault.

To live with a chronic degenerative disease one must constantly engage in meaning-making. Why? It is because illness is unremitting and untrustworthy. A medical crisis can topple all that you have worked towards in a mere blink.

Therefore, we are professionals at reconstruction and rebooting our future.  Often times, it is a future tinted by professional and personal sadness. Professional goals wane under the weight of the body often causing an individual to lose their job or relinquish ambitions. Illness demands a personal reimagining of what family looks like sometimes forcing an individual to move in with a family member who subsumes a caregiver role or surrendering the dream of having a family and experiencing parenthood.

Illness fractures identity and makes us feel less complete because completion is continuously interrupted.  I believe searching for the “why me” is not out of anger, jealousy, or pity but out of the attempt to take all these futures interrupted and find fulfillment in a life that no longer looks like the life originally intended.

Chronic illness mandates that the individual who lives with it coat themselves in an extra layer of depth because it is a permanent state and the human mind has forever raised questions about immutability.

I spent the last year in renovation.  It’s frightening; isn’t it?  There’s a trauma processing that must be completed in order to move forward in life.

When I was first diagnosed with endometriosis and a chronic pain condition due to a spinal injury, I had no idea nor was it explained to me that I was going to have to go through a continual cycle of insecurity. I was oblivious to the fact that I was going to have to live my life in a temperamental space.

It is of my opinion that chronic illness patients do not fit easily into the usual experience of loss because our loss is not consistent.  The future is unpredictable and so our stories are discontinued and resumed and this process repeats infinitely.

Thus we are forced to mourn each time and rebuild our futures anew holding our breath again that the house will not collapse with us inside. Our narratives remain disjointed and so without any desire for it we gain a level of complexity that is difficult to communicate and share with others even those we love the most.

I don’t know if there is a way to rid ourselves of this anarchy that illness brings. What I am still learning is that inside this chaos we must pledge to coming out of the other side of it. We must promise to find our voice again.

I have been away but now I am returning.  Each one of us can say that.

Although it may appear like a small triumph, I am proud of my return and I am proud of yours too.”

***

The above post was written by my friend C. over at her blog Para Las Fridas.  I have re-posted it here with her permission because it is quite honestly one of the most amazing accounts of life with chronic illness I have ever read.  From the moment I first read it, I was struck by the way C. managed to put into words aspects of my own experience that I had been afraid to face, much less articulate to myself.

Like the feeling of having lost time, of living according to a completely different calendar than everyone else.  Of knowing I’ve disappeared from the world, for months and years at a time, while life has marched on unrelentingly for everyone else.

The feeling of resurfacing, of returning, without knowing if it’s an illusion, or for how long I’ll be allowed to stay before disappearing again.

The feeling that I’ve become an expert at remaking my identity: after each disappearance and returning, constructing meaning again as best I can, assembling the pieces that make sense, filling in the gaps in a way I hope no one else notices.

C.’s words give me the courage to come on my blog and tell my own story, when I’m afraid it’s been too long, or no one will be able to relate.

I am not the only one who feels this way; I am not the only one who has disappeared and returned.

***

You can check out the rest of C.’s writing at Para Las Fridas!  It is simply incredible.

I also wrote this post outlining some of posts C.’s site that meant the most to me.

Lastly, you can also see what C.’s up to on Twitter.

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Inspiration

Because the world needs you

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For the first time in, oh, slightly over ten years, my health issues are not seriously obscuring my ability to deal with life.

Mostly through learning about the body, and getting stronger, but also adjusting the way I do things, and my expectations… I’ve come so, so far from the places I once was.

I was telling a friend, a week before the election here, that I was beginning to feel my ability to pay attention to politics and the world at large return to me.

For so long, my health problems forced my gaze to become myopic.  Suddenly, it seemed like 95% of my energy and will to live, really, was going towards simply getting through one day to the next.  Putting one foot in front of the other– even walking from one room to another became a huge task.

My mind was clouded by thoughts of pain.  Forget about work, grad school– I couldn’t think straight.  Sometimes I was in so much pain it was all I could do not to scream.  The daily annoyances of trying to do even the most basic of tasks when my body couldn’t function piled up like a brick wall, blocking my attention from anything else.

So I stopped paying attention.  I checked out, and did what I needed to do to overcome the cards I’d been dealt within my own life.

About month ago, I finally felt something finally click into place again.  I guess it was pretty easy, right before the election and all of the emotions it stirred up for everyone, to begin to feel passionate again.  But I felt the old me come back– the me that couldn’t tune it out, didn’t want to tune it out.

And then I opened my eyes again, to find the whole world seems to be on fire.

This post isn’t supposed to be about me.  I want to tell you all of the things I’m thinking, now I’m tuned in again.  But quite frankly, I’m not sure I’m ready to deal with angry Internet commenters on here.

I’m not sure where to start, but I need to do something.

I guess I’ll begin by sharing a few thoughts:

First, I will remind myself about how we all can play a role in helping each other, in creating a better world.  That there are many ways to contribute.

And that there is simply, utterly, no time in judging ourselves for the problems that we do have.

I struggled for a long time with the fact that my health problems were not “that bad.”  That other people had it worse.  Even my former-favorite doctor said the same thing to me once: “I see other people with worse problems, you know.”

For so long, I felt guilty, selfish.  I had all the time in the world to devote to my health.  I had a roof over my head, a family that supported me.  Was it all in my head– was I  making a big deal out of nothing?

Years later, now that I stand on the other side of the abyss, having finally found answers I needed, I can tell you unequivocally that way of thinking is stupid.

Yes, other people have “worse” problems than I had.  But if there’s anything I’ve learned in all of my studies of the body, it’s that sometimes, even if one little thing goes wrong, it can have far-reaching effects.

The problem is there; pretending it isn’t takes away energy that could be going to actually solve it.

And if it is a “small” problem, isn’t that all the more reason we should be taking steps to solve it and get it out of the way?

When I look back, I know that if I had managed to redirect half of the energy I spent judging myself towards doing my own research and getting second and third opinions, I probably would have gotten to the point I’m at now a lot sooner.  The point where I am able to pay attention to the world at large, and hopefully do something to make it a little bit better.

Instead of thinking of a problem as “small,” maybe we should be thinking of it as “more likely to be solvable.”

Life is too short, and too precious, and there is too much time going on, to judge yourself for an experience you didn’t ask for.  It is what it is– take time the time, do you what you need to do to find a solution, because you need to move on.

Because other people have problems worse than you.

Because the world needs you.

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Creative Writing, eating disorders, My Story

A Clearing

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So I’ve been clearing out all the old stuff from my storage unit.  Finding so many reminders of all the plans I once had.

The high-heeled boots I bought senior year of high school, right before the Halloween dance.  My friends and I were all going to go as “sexy cops.”  (I know).

My running “spikes,” as our cross-country team called our specialized lightweight racing shoes.

It’s bittersweet, to look back and remember all of the optimism I had towards my goals– goals I would never reach.  Especially when I can recognize that some of those goals were pretty unhealthy.

Why did I need to wear high-heels?  They were only making things worse, as I was developing compartment syndrome.

Why did I need to run?  I truly loved it… but at the same time, I wasn’t truly listening to my body, and ran it into the ground.

So much pressure, to be thin, to be pretty.

So now I’m clearing out my storage unit, and there are just so many clothes.  So many clothes, in just about every size.

My size 2 clothes– the last clothes I bought before my health issues spun out of control and a medication forced me to gain weight.  At the time I thought it was horrible, but now I can see it was a blessing in a disguise.  It took something overpowering, and dramatic, to truly break me out of that way of thinking.

Chronic pain finally pushed the obsession with being thin out of my head.  There was no room for anything else; there was only survival, from one minute to the next.  I’m not sure if anything else could have done that– not without it taking years.

***

But I’ve held on to my old clothes all this time.  I loved them, because they were my way of telling the world, at 16, that I was an adult.  (An adult that wanted to dress just like Buffy!).

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My outfits, at the time, felt like works of art.  Handbags, sweaters, dresses– everything perfect.  My mom had picked out all of my clothes for me as a kid, and in the cutthroat world of high school girlhood, it took me a while to define my style.

Once I did, my clothes became my way of making a statement.  I discovered that the better I looked, the more power I had in the social world of high school.   If I looked perfect, it was harder for other girls to make fun of me.  My clothes became my armor.

When I gained weight at first (right after high school ended), I held on to all my old things because I thought I’d eventually be a size 2 again.  Then, once I realized I never actually wanted to be a size 2 again, I continued to keep them simply because it felt strange to part with them.

They’d helped me to define myself as an adult.  At one point in time, they’d protected me.

And they’d been waiting for me for so long, like a lost bookend, marking where I could find the life I’d been waiting to come back to when things finally got better.

I wasn’t ready, until now, to let them go.

But I don’t need or want that life anymore.  I no longer feel like I need to wear high heels in order to be a true girl.  I don’t want to put on eyeliner every morning like it’s war paint.

And I don’t need to weigh 115 pounds, or to be able to see the outline of my hip bones perfectly, in order to be attractive.

I just want to be me.

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My Story

The road to physical therapy school

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It occurred to me recently that I really haven’t talked much about my progress towards becoming a physical therapist on this blog.

So, if you’re curious, here’s my deal:

I have a Bachelor’s degree in the humanities.  My concentration was social theory, with an emphasis on gender studies.

My goals, when I was in college, were focused in a pretty different direction than the path I’m on now: I wanted to study social policy, and travel abroad working for various non-profits and human rights agencies.  I also wanted to become a psychotherapist.

I started down that road immediately out of college, working at a mental health agency so that I could gain experience before grad school.

Before this, I’d already had a lot of struggles with chronic pain, and had to have surgery for compartment syndrome.  Yet after college, I’d managed to reach some kind of holding pattern where pain didn’t cause me to miss work.  That was, until the awful winter of 2010, when a few things happened in a brief span of time that caused my pain levels to flare way up.

That was my breaking point– when I tried, anew, to get answers.  Finally, after months of searching, I found my physical therapist Tim, who had studied pain neurophysiology education with Neil Pearson.

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Ultimately, I was so inspired by everything I learned from Tim that it led me to consider becoming a physical therapist.

I’d always found physical therapy to be a fascinating field.  As a high school runner, I’d had a few serious injuries where I really needed PT to get up and moving again.   I had formed some great relationships with my therapists, and hung on every word they said.  A part of me was always a little bit sad when they told me I was doing well enough that I didn’t need to come back.  I would have gladly come back back every day, just to hang out and learn.

When I was a freshman in high school, I partially tore my hip flexor during a cross-country race and was on crutches for months.  It was a physical therapist who helped me overcome my fear and eventually start running again.

Then, when I was 19 and had surgery for compartment syndrome, it was a physical therapist who got me back up and moving again.  While I’ll always be grateful to the surgeon who fixed my legs, my PT was the one who gave me the confidence to actually start using them again.

And now, when my life had ground to a complete halt at age 25 because of constant, debilitating pain, it was a physical therapist who gave me my life back again.

I’d always had so much appreciation for PT’s.  Now, the idea dawned on me: why don’t I try to become one?

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Growing up, I didn’t really consider myself that much of a science person.  Looking back, I think a lot of that has to do with the environment at my school, and how our science classes were taught.

Once I started looking into becoming a PT– taking classes, shadowing practicing PT’s– I realized I always had been interested in health science, and exercise physiology, and human anatomy.  It had just taken a different form.

I’d always wanted to do the best thing for my body.  I loved when my running coaches talked about strengthening, building endurance, the benefits of stretching.

And I’d always been interested in nutrition, and being healthy overall.

It’s just that when I was younger, I didn’t have the healthiest mindset, and took some of these interests too far.  But my eating disorder was not all of me– it was a snapshot of a specific place I was in, at a certain point in time, at a certain age.  Although I had some distorted beliefs, that does not mean I wasn’t also genuinely interested in health and fitness at the same time.

The difference is that now, I am able to come at it in a much healthier, stable, and more grounded manner, and know that I will be able to help others with similar struggles.

***

Five years later, I can say that I ended up loving all of my prerequisite classes, and I’m so glad I made the decision to take them.

It’s been an incredibly long road.  You see, some of the classes I needed to take had prerequisites of their own.  At the same time, due to my SI joint issues, there were periods of time where I found it incredibly difficult to walk, drive, or even stand up for more than a few minutes.

Despite of all of this, I’m finally at the point now where I’ve basically taken all of the classes I need in order to apply to PT school.  (I might need to take one or two more, depending on specific programs I might try to get into, but most of my bases are covered).

And honestly, I’m so glad I made this decision.  I realized that, while the humanities will always be my first love, I am also a science person, and have been all along.   I couldn’t see it at the time, but I know it now.

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Favorites, Inspiration, mindfulness, My Story

San Francisco, Revisited

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It’s so interesting for me to go back to San Francisco.

As you may remember, I spent a few weeks in SF back in June, following a good friend’s wedding in Napa Valley.

I actually just wrapped up another trip out there. I spent most of September in SF, staying with a friend and trying to investigate whether I’d eventually want to move there for work and/or grad school.

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The city of San Francisco is symbolic for me, for a number of reasons.

Back in 2005, one of my friends from high school (CA) and I had planned to travel to the Bay Area and visit our friend Karen, who was attending Stanford University at the time.

Our trip was actually planned for the same time of year– September.

However, I’d just had my surgery for compartment syndrome that spring, and at the last minute, I freaked out and canceled my plane ticket. After all I’d heard about San Francisco’s hills, I just didn’t think my legs were ready, and I didn’t want to take a chance. So CA flew out by herself, and I stayed behind to mend.

I was 19 at the time, and although I didn’t know it yet, I actually had somewhat of a long road ahead of me. As I’ve mentioned in previous posts, I didn’t travel at all in the first half of my 20’s, and it was only in the second half that I started to ease back into it with local trips, such as camping in the White Mountains of New Hampshire.

As most of you probably know, I developed my problems with central sensitization (CS) around that same time, shortly after my leg surgery. I definitely don’t think the surgery caused the CS, but as something that the body perceives as a “trauma,” it may have been one of the precipitating events.

I’ll talk more about why I developed CS in the future, but for now, what I want you to know is that for the next five years, I didn’t travel at all. The second five years, I got back into it slowly, but only local trips, and not by myself.

So now, at 31, after everything I’ve been through: compartment syndrome surgery, discovering pain neurophysiology education, struggling to heal my sacroiliac joints…. it feels almost like I’m living in a dream world. To be able to travel to San Francisco and walk around to my heart’s content– it’s like I was transported to a parallel universe.

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Here was the moment when it really hit me, how far I’d come:

I was walking from my friend’s house to the gym, and I ended up walking up some really huge hills. Like, gigantic hills– the kind you think of, when you think San Francisco.

And I was just doing it. I wasn’t sightseeing– I hadn’t set out to “walk the hills.” I was just trying to get from one place to another, like anyone. Like a local.

And it was okay.

I mean, if anything, I got a little bit of a wake-up call about maybe needing to do more cardio. But after all the years I’ve spent only being able to work out in a pool, it was such an amazing feeling to be moving through the world, as fast as I wanted, feeling my heart pumping. I was free.

It was a feeling I’d forgotten– to truly push my cardiovascular system to its limits with each footstep, out in the wind, out in the sunshine. For the past few years, I only got to experience that feeling within the safe, weightless environment of the pool.  While I am so grateful for my pool workouts, my trek on this day brought back a form of muscle memory. With the thud of each footstep, I was awake. I was back.

The thing is, this isn’t really meant to be a post about physical accomplishment. Instead, it’s about my unexpectedly “Returning” to an aspect of life that I was prepared to live without.

I had made peace with not being able to move the way I wanted. Not being able to travel, and more or less being stuck in place, taught me to try to always notice the beautiful little things around me. I’m not saying I succeeded all the time, but it was a skill that I worked at, and I got better at it.

I had to learn to savor the little things– the colors of the leaves in fall, the glitter of sunlight filtering through the trees, the taste of really good coffee– because it was the only way to make up for the things I’d lost.

Over time, it started to come more naturally. Maybe I was just getting into a better place in my life, emotionally. Maybe I was just growing up. Or maybe it was all of these factors.

But the point is, it happened. I learned to live without running, without traveling, without feeling free in a geographical sense, because I realized there were more important ways to feel free.

Now that that kind of freedom has come back to me, it’s like an unexpected bonus. And I view it gratefully.

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My Story

The ‘Tyranny’ of Positive Thinking

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A friend posted this article about the pitfalls of positive psychology on Facebook this morning, and gosh– it resonated.

I’ve honestly been annoyed by the concept of positive thinking for a long time. It seems like most of the time, when someone tells urges you to be more “positive,” what they really mean is that they’re tired of listening to you.

The whole idea of trying to “block out” negative thoughts never made sense to me. If you have a problem, shouldn’t you try to solve it? Pretending the problem doesn’t exist isn’t going to make it go away. You have these feelings for a reason. It’s gut instinct trying to tell you that something is wrong and needs to change.

As someone who’s spent a lot of time battling health issues that appeared to many people to be “in her head,” I’ve probably been accused of dwelling on the negative more than the average person. (But probably not more than most of my fellow health bloggers– I know you guys will know what I mean!).

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I had never really considered how that mindset might be unique to where I live (the Northeastern US) until I spoke with my friend M., who is from Costa Rica. She told me that, since moving to the US several years ago, she feels a definite pressure to sweep problems under the rug and always appear cheerful– a pressure that was not there back home.

In Costa Rica, M. says, people have more of an understanding that problems are part of life, and that we all need to find someone else to listen once in a while. When you’re experiencing a crisis, it’s not so much a reflection on you as a person, like it is in the US. It’s more that it’s your turn to go through an aspect of life that everyone experiences occasionally.

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Well, this Newsweek article totally backs M. and me up.

The author, Morgan Mitchell, cites several studies that have demonstrated that there are drawbacks, and even potential dangers, of positive psychology (and its less-nuanced cousin, positive thinking).

For example, Mitchell cites a recent study by Karen Coifman et al., which found that “when people acknowledge and address negative emotions toward their relationships or chronic illnesses, it helps them adjust their behavior and have more appropriate responses. Those negative emotions, in turn, benefit their overall psychological health. ”

That’s exactly what I’ve been saying. You need to fully experience the negative emotions you have, so that you can process them and then get to a better place emotionally.

Mitchell also references a study by Elizabeth Kneeland and colleagues, which “concluded that people who think emotions are easily influenced and changeable are more likely to blame themselves for the negative emotions they feel than people who think emotions are fixed and out of their control.”

In other words, people who view their own negative response to a given situation as a reflection of their own shortcomings are most likely to feel badly about themselves. To me this seems like a complete waste of energy– instead of judging yourself for your emotional response to something, wouldn’t it be better to focus on doing whatever it takes to create a better situation?

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As much as I know “positive thinking” annoys me on principle, this is still something I’m struggling with. To let myself experience a difficult situation and, instead of judging myself for the way I react, to recognize that there is actually some wisdom in that reaction. My truest and deepest self is letting me know that this situation is not okay for me, and I need to take steps to change it.

It’s okay if things don’t always work out. It’s okay if something you thought was going to be great turns out not to be.

***

One of my favorite bloggers, Beauty Beyond Bones, wrote a post about a similar situation the other day. She found herself in a professional situation where she did not feel respected, and was not being compensated adequately. After some time, she made the difficult decision to stand up for herself, despite the potential consequences it could have for her career. She wrote,

“Our actions, whether consciously or unconsciously, communicate messages to ourselves. What do we think we’re worth? Do I allow someone to walk all over me? Am I completely upending my life to meet the needs of someone who doesn’t even respect my time when I’m there?

I am worth respect. I am worth honesty. I am worth dignity.”

This is what I believe. Sometimes, when you really just feel awful about a certain situation, and the feelings don’t go away– those feelings are there for a reason. Instead of wasting time judging ourselves, or fearing others will judge us for our response, we need to trust that inner voice that tells us where we need to be.

Trust Your Nervous System photo courtesy of Cliph

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My Story, Sacroiliac Joint

The end of my SI joint problems is officially in sight.

I’ve held off on writing this post until I was absolutely sure, but the time has come for me to make my official pronouncement.

In my post at the end of this past June, I explained how my SI joints were unexpectedly doing better following my 3 weeks in California. At first, I had thought it was something different about my routine, or being distracted by being around friends. However, once I got home and attempted to resume my regular chiropractic visits, I found myself feeling less stable. Maybe it wasn’t Boston, it wasn’t the East Coast weather, it wasn’t my routine… it was the chiropractor.

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Now, let me back up. When I first developed my SI joint problem 5 years ago (God, has it really been that long?) my chiropractor was literally the only medical professional who could even begin to explain what was going on, much less free my leg when one side of my pelvis locked-up.

I saw several medical professionals, including two physiatrists and an orthopedist. I also saw a total of four different physical therapists. No one could tell me with any clarity what was wrong.

I saw one misguided physical therapist who specialized in “manual therapy,” meaning she actually put her hands on my hips and lower back and tried to use pressure to re-align me. This resulted in absolutely no change.

The ONLY person who seemed to be able to help me at all was my chiropractor. I walked into his office with my pelvis completely locked up, feeling as though someone had tied a belt around my legs– that’s about how well I could move them– on the verge of tears. “Oh,” he said calmly. “It’s your sacroiliac joint.”

And with a few clicks of his “activator” tool, my legs and I were free.

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I wanted to give you this backstory so that you can see how, at one point in time, I was so grateful for the help of my chiropractor. He truly helped me at a time when no one else was able to; when all anyone else gave me were strange looks and exercises I was unable to do– followed by more strange looks when I tried to explain that it’s not that I didn’t want to do the exercises, it’s not even that pain was stopping meit’s that I literally did not have control over my legs. When my hips were stuck, my legs were stuck.

My chiropractor was able to explain to me the anatomy of the joint, and how this mysterious pain on the sides of my lower back could actually be related to me being unable to move my legs. He made me feel that I wasn’t a freak– he told me that this problem was actually quite common– and on top of that– he could make the problem (temporarily) go away.

It’s also my chiropractor who convinced me to finally work out in a pool. Despite all of my hesitations, and insistence that I really just wanted to work out on land… he repeatedly did his best to convince me that this problem was probably going to be permanent unless I found a way to strengthen my muscles without putting more stress on the joint. The adjustments were only going to be a temporary fix, he explained, until I created more muscle strength to hold the joints in place.

He was right about that, too. I didn’t really start to get better at all until I finally joined a pool. Up until that point, my land exercises just seemed to make things worse. (The pool was turning point #1).

I got even better, still, when I truly began to follow a thorough stretching routine. For a while I didn’t know how to stretch because the simple act of getting down on the floor was enough to throw my SI joints out of whack. Undoing my entire chiropractic adjustment just for the sake of stretching seemed backwards; like undoing the foundation of the building in order to adjust something on the roof.

However, I eventually found this really awesome stretching table on Amazon, and honestly– it changed my life. Finally I was able to lie down and do all of my stretches in a way that didn’t impact my hips. So that was turning point #2.

That was my life for a few years: pool, stretching, chiropractor. My life revolved around this problem, because there didn’t seem to be much of an alternative. Once my hips locked up, all else ground to a halt. As I said before, when my hips were really locked, it was as though my whole body was in chains. It honestly felt as though someone had tied a belt around my upper thighs; it was sometimes really difficult to put one foot in front of another.

But it wasn’t a permanent disability either. It made no sense to just give up, accept that I couldn’t walk, and sit in a wheelchair. Because I could walk, when my hips were aligned. During those first few moments after I left the chiropractor, I felt totally perfect and free. It’s just that things never stayed that way.

So I did my best, doggedly. I was afraid to drive– afraid that if something went wrong and I had to slam my foot on the break, I’d hurt my hip. So I had my parents drive me to the pool at the gym. Almost every night, I’d go just before closing, trying to find a time when the water wasn’t so choppy. I was so weak and out of shape when I first started going that everything hurt, if I went at at time when there were tons of lap swimmers.

So I’d try to go right before closing, when most people had already gotten out to shower. I’d stay in until the very end and then more or less have to rush outside, with my hair still wet.

There are a lot of pictures of me taken during that time period, of me out with my friends in downtown Boston. All of them are dressed up– high heels, makeup, straightened hair. And there I am– my outfit is cute, but my hair is still wet. (It sounds like a small thing, but honestly– I think my inability to keep up appearances actually affected some of my “friendships,” which I later realized weren’t really friendships.  More on that later).

I was willing to make sacrifices for the sake of getting over this problem. But now I am so frustrated, looking back, because the whole thing seems so pointless.

Turning point #3 came when one of my physical therapists finally showed me how to adjust my SI joints myself using a foam roller. As I’ve mentioned in previous posts, this was also life-changing, because now I did not need to depend on my chiropractor. When my leg got stuck, I was able to free it myself.

That brings me up to where I was in February, when I wrote my post about how I was doing better and things were feeling more stable. I had a feeling the end was sort of in sight, because I was starting to be able to do more and more. But I wasn’t out of the woods yet; I still had to check my SI joint and do my self-adjustments several times a day.

Then, this summer I realized that, after going all of June without having a chiropractic adjustment to my SI joints, I was actually doing better. I decided to experiment with not having any further adjustments to the area, to see what happens.

Here it is: turning point #4.

I can honestly tell you that my SI joints have not locked up once all summer. Things have not necessarily felt perfect, but I can tell it’s just muscle imbalance; it’s not the joint.

That same horrible dull ache at the intersection of my spine and pelvis? Gone. Just a memory at this point.

That awful, painstaking feeling of not being able to move my legs, of having a belt wrapped around my upper thighs?  Gone.  I’m almost starting to forget what it felt ike.

****

It is at once exhilarating and frustrating to realize that I think the very thing which got me started on my road to healing– the chiropractic adjustments– actually became detrimental in the end.

I have seen at least one bad chiropractor who I don’t trust, and would never for a million dollars allow to touch me again.

I don’t see my chiropractor that way.

I think he was, actually, able to correctly diagnose the problem, and I also do think his adjustments were putting my joints into proper alignment.

It’s just that, to an extent, I think my body also needed to be able to find an equilibrium.

The adjustments became too much, somehow.  Perhaps they were too much force for my ligaments, or perhaps they overly disrupted the pattern my muscles were used to holding everything in.

I definitely don’t feel that I was permanently injured by them, or anything like that.

It’s just that, at some point, my body just wanted to be able to locate some sort of homeostasis.  For my muscles and nervous system to have a chance to adapt to the way things were– even if, alignment-wise, it wasn’t “perfect.”

Now, I am certainly not suggesting that I would have gotten better if I had just left my SI joints alone, and allowed them to stay “stuck.”  That absolutely 100% would have failed.  When I think back to that horrible, dull, aching, grinding sensation, of two parts of the joint rubbing together in a way they were never meant to rub together… no.  Absolutely not.  There was no way any form of healing could have come out of that.  You can’t build muscle and get stronger when you can’t even move one of your legs.

But the chiropractic adjustments were just too rough.

I wish I had been shown how to do the self-adjustments from the beginning.  As I’ve learned in all of my PT prerequisite classes, your body has built-in reflexes that keep you from injuring yourself during normal movement.  When you perform a self-adjustment for the SI joint (which involves contracting certain muscles around the joint in a particular way), your nervous system will use these special reflexes to ensure that you don’t injure yourself, or put unhealthy levels of strain on the joint.  There is a level of precision here that no chiropractic adjustment can re-create.

Now, to be fair: I don’t know that I would have been able to develop the skills necessary to identify which way I needed to actually adjust my SI joints, without all of the feedback I’d gotten in my chiropractic visits over the years.  Compared to my PT, I actually think my chiropractor is better at diagnosing exactly what’s happening in the joint.

It’s just that his actual method of fixing that problem ends up backfiring.

Now that I know what I know, I have a lot of ideas for how someone like me could have been helped out of this situation a lot more quickly.

For example, having a PT who really took the time to teach about the SI joint, rather than just prescribing exercises.

Not just about the anatomy of the joint, but how to self-diagnose which way your pelvis is rotated, as in my experience, the self-adjustments have been the way to all healing.

Of course, as I write this,  I also reflect back on the fact that I was lucky to find a PT who knew about the SI joint at all.  Back in 2011, it did not seem that most physical therapists did not know it could cause problems (although thankfully, that seems to be changing).

I am going to continue to talk about the SI joint– both in terms of chronicling my own healing, as well as just to hopefully raise awareness.

I’m also now working on a second site, My Sacroiliac Joint Saga, where I will be talking about everything I’ve learned.

Looking back, all of the tools exist that would have allowed me not to suffer for so long.  It was only ever a matter of finding them.

 

 

 

 

 

 

 

Sacroiliac Joint

Could my frequent chiropractor visits be making my SI joint problem worse?

Normally, I tend not to share work-in-progress type posts. I don’t like to take up everyone’s time talking about something I’m not sure about.

I’ve just been through SO much– filled so many notebooks with my scribbles, had so many “epiphanies” thinking I’d figured it all out– only to find out that so many of the things I discovered turned out not to be true.

Now I tend to hold off on making pronouncements– much less asking other people to read about them– until I know I’m not barking up the wrong tree.

But there was one very interesting issue that came out of my trip from San Francisco, and I have a feeling it might be relevant to other people, too.

I think my frequent chiropractic adjustments may have been making my sacroiliac joint problem worse.

Since I developed my SI joint issues in the fall of 2011, I’ve gone to the chiropractor, on average, once a week. (Let’s not even talk about how much money I’ve spent).

When my SI joints first locked up, my chiropractor, Dr. K., was the only one who could even explain to me what was happening. I saw several different physical therapists, as well as a back specialist, and none of them were able to offer any type of diagnosis.

Dr. K., meanwhile, told me it was my sacroiliac joint making me feel like one leg was much shorter than the other. And, more importantly, he was able to fix it (at least temporarily).

However, I always noticed that during the first few hours after an adjustment, I seemed to be extra prone to having a setback. I used to try to go for walks following my appointments, but I found that even though my pelvis was “aligned,” one misplaced foot on uneven ground could make me “lose” my adjustment and end up even worse off than if I hadn’t gone to the chiropractor at all.

So I stopped doing anything extra after my appointments. I would try to sit in the car and rest for 20 minutes before driving. Then I’d come home and move gingerly throughout the house, knowing I would be extra prone to setbacks for the next 3 or 4 hours.

I’ve been in this holding pattern with this problem for years. Things are a lot better than they were in 2011, that’s for sure. But my pelvis is still unstable; I still can’t do everything I want.

***

Before I left for San Francisco, I found an interesting comment on one of the SI joint Facebook groups I follow.

Someone wrote that her physical therapist had cautioned her against getting chiropractic adjustments for her SI joint. The reason given was that the force of the adjustments could actually cause the ligaments in the area to stretch out, while they need to “tighten” back up in order to heal.

Something about this idea resonated with me, but I was about to get on a plane in a few days, and I didn’t want to try anything new. So I put it out of my mind, and actually went to the chiropractor twice in the week before I left, hoping to get myself in as good as shape as possible. Both times, my body slid back out of alignment afterwards like butter, and I got on the plane frustrated and expecting to limp for the entire trip.

Yet, during my two and a half week trip,. I actually started to feel better.

At first I thought it was in my head. It’s a new city– I was excited. I was distracted. I had my friends with me all the time– I was happy.

But now I think a big part of it had to do with the fact that I went two and a half weeks without any chiropractic adjustments.

***

Two days days ago, I went to see my chiropractor. It was actually my neck that was really bothering me– my SI joints didn’t feel bad.

During my visit, Dr. K. confirmed that my pelvic alignment was actually pretty good. He only performed one small adjustment to the pelvis (the lumbosacral junction, to be exact) just to help move things along a little further in the right direction.

But on the drive home from that visit, I felt markedly worse. I had to drive through a lot of road construction, and felt every single bump painfully in my lower back/pelvis, whereas I hadn’t really noticed the bumps on the way there. At one point, the car “thunked” down several inches off of the smooth, finished pavement onto the rough, unfinished surface that came next. A pain started there that I still had when I got home, and when I got out of the car, I was limping.

That’s when it hit me. Maybe the adjustments are making things less stable. Why, after all, would I come home so much worse off than before I had gone?

To be clear, I wasn’t limping after the adjustment itself. When I walked back out to my car from the office, I felt like everything was fine (and my neck felt a heck of a lot better).

But the adjustment itself may have put too much stress on my ligaments (and other tissues as well?) meaning that the bumpy drive home immediately afterward turned out to be detrimental.

***

It’s been two days, and I’ve been playing it by ear, trying to see if things start to feel more stable. And, guess what, they are.

I’ve had this funny feeling all along, like something about this problem didn’t add up. After all, I’d met other people with SI joint problems and they’d recovered much more quickly than I had. Why was I the one who could barely move, who I felt as though I was addicted to chiropractic treatments just to keep things lined up?

What if part of the problem has been the chiropractic treatment itself? Is it possible the adjustments have been creating a vicious cycle where, although my joints are put into alignment, my overall stability and ability to maintain that alignment is undermined?

I don’t know for sure, but given how much better and more stable I am beginning to feel again, two days later… I think it’s pretty likely.

It’s a pretty frustrating realization to have, after all the time and money I have dedicated to this “project.” Yet it is funny to note how, again, that San Francisco trip I was terrified of ended up teaching me something I could never have come to realize otherwise.

For now, I am going to forego the chiropractic adjustments, at least on my low back and pelvis, and see how things go.

***

Update, Sept. 2016: It turned out that chiropractic adjustments were absolutely making my SI joints worse.  I’ve stopped receiving adjustments to that area, and the SI problems I had for five years are beginning to fade into the background!  To find out more, check out my follow-up post The end of my SI joint issues is officially in sight!

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My Story

Newfound possibility

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I’ve been away from my blog for the past month, and I have so much to tell you all. I took what was supposed to be a five-day trip to a wedding in California, and turned it into an amazing, impromptu two and a half week stay.

To be honest, I was really scared to take this trip. Since I first developed health issues at age 19, I have really not traveled very much at all. It’s only been in the past four years or so that I’ve started to open myself back up to small weekend trips around New England.

But California? I had to go… one of my oldest friends was getting married.

So I went. But I really didn’t want to.

I hadn’t traveled in so long that everything felt rusty. I’d clung to the same routine for so long, hoping my pain and SI joint issues wouldn’t get worse… and now, everything was about to change.

Now that I look back, I can’t believe I was so scared of a five-day trip. It’s not like I was traveling to the middle of nowhere. I was going to Napa Valley and San Francisco… two places that are hardly without amenities. I had just gotten so used to the idea that travel was not for me, that I felt as though I was traveling to a foreign country.

So I went.. and everything turned out fine. Better than fine. The wedding was in Napa, and then after that I spent two nights at my friend Karen’s apartment in San Francisco. We were having such an amazing time catching up, Karen finally getting to show me the sights and sounds of the city she’d been telling me about for ten years. After one day, we decided I should switch my plan ticket and stay. It’s something that felt so out of character for me… but I did it.

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It ended up being a great adventure, and in some ways… I feel as though I re-joined the modern world. (It feels weird to tell you all this, but it’s the truth). My health issues had forced me to stay still in one place for so long, that it seemed so much had passed me by.

Now, it was time for bootcamp. I had to remember how to book a plane ticket; how to check a bag and get through security. How to handle a rental car. I got an AirBnb account; I got Uber; I got Lyft. I had to navigate us all throughout Napa Valley for the various wedding events, and then back down to San Francisco.

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I had to put so many of my fears aside, because there simply wasn’t time for them. And I realized that (apart from the extreme amounts of money I spent on the trip) most of my fears turned out to be unfounded.

To be fair, I had some amazing friends to help me. My friend Karen is amazing, and so is my friend Amanda, who flew with me from Boston to be my plus one at the wedding. Part of the reason I asked Amanda to come – other than, of course, wanting her company– is that I was afraid I would need a lot of help physically, dealing with my suitcase and stuff like that.

But it was all okay, and if anything, I realized I really didn’t need Amanda’s help as much as I thought. Now, I actually think I could have made the trip alone (although I obviously still would have wanted to have Amanda come for the company!).

The lesson I’m taking away from this is that sometimes, change can be good. A new experience, particularly one that we fear, can be a great way for us to open ourselves to new possibilities, and to learn things we didn’t even know we didn’t know.

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Now, I’m not suggesting that things are always going to be easy, or that all those of us with health problems have to do is wave our magic wand, think positive, and hop on a plane, guaranteed a great trip.

There’s a lot that has gone into getting me to this point. Learning the right exercises to strengthen my body, and learning the right techniques to help calm my nervous system. My life is opening back up again, but it’s only been because of the time I’ve spent being mindful of how I live, and carry myself, and remembering to work with my body instead of against it.

This is why I feel so powerfully about some of the things I share on my blog– when you have chronic pain or fibromyalgia, it is possible for things to change.

I’m so glad I took this trip, and am so excited to see where my newfound sense of possibility takes me. I hope you will all stay tuned!

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Creative Writing, eating disorders, Favorites, Inspiration, My Story, Sacroiliac Joint

Inner Limits

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I’ve realized something about myself recently– something that has implications for my ability to heal. I’m sharing it with you all, in case it can help spark a similar realization for anyone else out there.

***

As many of you know, when I was in high school I had an eating disorder. I was very rigid; every day I ate a specific number of calories, and every day I burned a specific number of calories. If I wanted to eat more than my designated limit, I had to exercise even more.

Through obsessive calorie counting, and running an average of 5 miles a day throughout most of high school, I managed to keep my weight a good 10-20 pounds below my body’s natural set-point.

Sometimes, now, I forget what a big deal that really was. After all, it was something that was ultimately within my control, unlike the years of inexplicable chronic pain that came afterwards.

However, it recently dawned on me that my eating disorder past was affecting me more than I’d realized, in unconscious ways.

Right now I’m dealing with the very complicated and frustrating process of trying to stabilize my hypermobile SI joints.

I was finishing my exercises the other day, and after a good 2.5 hours of going to the gym, using the pool and then coming home and doing even more exercises– and then stretching– I was feeling exasperated. Why, after all of this time, am I not better?

Fuck it, I thought. Why don’t I just keep going? Sure, I just spent two and a half hours exercising, but there’s more I could do. I could do more exercises. I could do more stretches. I could get on my computer, and research more.

Then it hit me. A tiny voice, from 16-year-old Christy, telling me I was afraid to do more. I didn’t want to invest too much; didn’t want to give myself over completely to anything that involved fixing or changing my body. Because that’s what I did with my eating disorder. It was an around-the-clock process to keep my weight that low, and I ended up losing all other perspective.

Now I had regained perspective, but unconsciously, I was terrified of losing it again. In fact, I was keeping my fist tightly clenched around it, restricting the time I spent trying to fix my physical problems in a way that wasn’t all that different from the way I had once restricted my calories. In both cases, I was using an artificial number to place external limits on something that scared me.

Of course, as soon as I realized this, I was automatically able to write it off as a fear that wasn’t worth holding on to. 31-year-old Christy knows that just because she spends more time trying to fix her SI joints, it doesn’t mean she is going to go back to a rigid way of thinking and denying her body what it needs. If anything, it means the opposite.

So I’m going to listen to myself. I’m not going to force myself to do anything, one way or another. If I want to only do my exercises for one day, and then stop, that’s what I’ll do. Another day, if I feel like exercising, and then doing some research, and then going to the chiropractor, that’s what I’ll do.

It’s not about the numbers; it’s about the process. It’s not about imposing limits; it’s about flow.

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