Creative Writing, My Story, Uncategorized, Women's Health

Seeing things clearly, without that added layer of judgement on top

I struggled with what to say on my blog this week, but I finally landed upon this idea as the thing that resonated with me at the current moment.

Something I’ve been realizing, more and more every day, is how much time I’ve spent judging myself for the problems I’ve had.  Not actively trying to solve them… just judging.

On some level I didn’t trust myself.  After all all of my difficulties in getting diagnosed and treated… at some point, I developed the belief that whatever health issues I was having, no one would really be able to help me.  My issues would probably always be too complex for any one person to truly understand.

From there, it became a self-fulfilling prophecy that played out from one issue to another.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.   I didn’t really believe there were answers out there, so I didn’t try that hard to look.  I gave up before the fight was over (until things got so bad that I finally didn’t).

Now I realize that, just because other people doubted me, I didn’t have to doubt myself.  And maybe, just maybe, I didn’t have to wait for things to get so bad before I took action.

In a way, my issues are too complex for any one person to understand, other than me.   I did have to step up, do my own research, and keep track of so many things myself.  But now I see that that’s a reflection on our health care system, not on me.

Everyone is rushed; insurance companies don’t pay for long enough visits, let enough adequate treatments.  (I personally feel that most of these efforts to reduce costs on the front end ultimately end up driving up costs on the back end, as people develop more serious conditions that could have been monitored or treated before they became more serious.  But I digress).

There was never any real reason for me to lose faith in myself.  My problems were real, and they had real answers.  (And you know what?  Even if they were in my head, mental health concerns deserve to be addressed too).

It’s like that quote from Eleanor Roosevelt:

“No one can make you feel inferior without your consent.”

For so long I gave so much of my power away… why?

There are so many bigger things happening in the world.  Why am I wasting time judging myself and holding back, when I could actually be contributing to something larger than myself?

For anyone who’s been struggling to make sense of what’s been going on in the world, I stumbled upon another amazing quote today, that was just exactly what I needed:

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I love this, so much.  Do justly.  Love mercy,  Walk humbly.  Nowhere in there does it say “second-guess yourself for trying to heal and then do nothing.”

I’m done trying to see things through the lens of “perfect” or how things “should be.”  I want to see things clearly (both in terms of the way I see others, and myself).

Judging yourself is really just a waste of time.

I want to have compassion for others, and maybe, for the first time in my life, also for myself.  I guess right now I’m learning what that means.

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This post isn’t supposed to be about just me (although it kind of seems like it, now that I read it over).  It’s actually supposed to be about getting “me” out of the way.  To stop getting caught up in a cycle where I judge myself instead of doing things, for myself or for others.

If you’re reading this, I hope you know what I mean, and that maybe this post was helpful to you, too.

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.

Interesting Articles, Uncategorized

Violins and enhanced sensory maps

Sunlight in Winter

violin player

I recently learned about a fascinating study that I had to share with you all.  Researchers took two groups of people– professional violinists and regular, everyday people off the street– and pricked everyone’s index finger with a pin.  The violinists reported feeling much more pain than the non-violinists, even though everyone’s finger was pricked in the exact same way.

I thought this was so interesting.  This article on Optimum Sports Performance sums it up quite well (scroll down to the “Influence Psychology” section.  The author writes, “The enhanced sensory map and awareness of their hands that a professional violinist has makes them hypervigilant to anything that may be remotely threatening.”

I love this phrase “enhanced sensory map.”  They say practice makes perfect– well, all those hours and hours of practicing has given that violinist a very well-developed communication pathway between hand, spinal cord, and brain.  He or she is…

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Inspiration, Uncategorized

Maybe everything is amazing

I first saw this Louis C.K. clip a couple of weeks ago, and I’ve been thinking about it ever since. (Be sure you watch until the 3:05 mark, which is where he really starts to make his point).

Studying anatomy and physiology and learning about the body has helped me to get to the point where I can start to appreciate just how crazy/complicated/complex our experience as human beings is.

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A lot of people seem to become intimidated when I talk about taking these classes, and say things like, “Yeah, but I’m not any good at science.”

It makes me really sad to hear people say that, because honestly—there was a time when I didn’t think I would be any good at science, either.

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I did pretty badly in science classes in high school because, well, my life was falling apart. I just couldn’t get it together enough to study enough, and when I did, nothing could really become cemented because I hadn’t really slept.

I did much better in the humanities classes, because it was easier to just wing it. I might have been to out of it to memorize chemical structures, but it wasn’t too hard to just read a novel and give my opinion.

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Then after high school: for years, in the back of my mind, I sometimes thought about becoming a physical therapist.

Originally, the idea was born more out of desperation than inspiration. I was so frustrated by the fact that there was always something hurting, all the time, and that I seemed to have a new physical therapy referral every few months. I was always really interested in the explanations the physical therapists gave me, and always did all my exercises, but it didn’t seem to be quite enough. I sometimes wondered if the only way out of this would be to take matters into my own hands, rather than relying on other people for the rest of my life.

Then I met Tim and watched Neil Pearson’s lectures, and all of a sudden my desperation turned to inspiration. There actually was a reason why I was hurting all the time—an overarching reason that I could work on, rather than targeting different parts my body, piecemeal, for the next several decades. And maybe I could help other people like me, like Tim had helped me.

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This is the point at which I actually started to look into what it would take to get into physical therapy school, and saw that I’d have to take all of the science classes I’d so carefully avoided in college.

Now I am grateful that I had to go back and take all of these classes. And I mean, we’re not really talking high level stuff here—we’re talking general chemistry, introduction to physics. The things you would take in your freshman or sophomore year of college.

Basic as they are, these classes have totally changed the way I look at things.

It’s like recognizing there are two sides to every coin. On one side, I can focus on my experience—the way a certain part of my body feels (or, in most cases, hurts).

If I want to flip to the other side of the coin, I can stop and think about the complex forces that are literally holding this part of my body together. The intricate chemical and electrical signals that sensations to travel from my the rest of my body to my brain, and then back again. And the different areas of my brain that are involved in letting me feel the pain, and determining how much of my attention is devoted to the pain, versus paying attention to other things.

And the thing is—you really don’t need to be an expert, at all, to develop this sense of appreciation. I mean honestly, I know nothing. If I wanted to go into more detail than what I just wrote above, well, I’d have to go open a textbook to make sure I didn’t tell you the wrong thing.

It’s not about mastering this information; it’s just about having been exposed to it, and having a sense of just how complex these things are. Complex, yet also orderly. Yes, we live in a chaotic universe, but our bodies have a blueprint that can be broken down into categories and understood.

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Sometimes I daydream about running a class for chronic pain patients. Not an academic class—more like a continuing ed class.

And we would just go over the very basics from anatomy and physiology. And my students could see that, when you just begin to learn about the body, it’s actually more like a language class than a science class.

Just as you would make a chart of the different parts of speech (past, present, future, etc.) you can make a chart of the major systems of the body. And then you can look at each system and break it down further; for example, you can break the skeletal system down into different types of bones, and then look at individual bones.

And then, as teacher, I would focus on the bones of the spine, since the spine is such a grave, sometimes threatening concept for anyone with back pain. I would explain that even though it looks like some kind of alien invention when you look at a diagram, the spine can actually be simple:

There are four parts of the spine. From top to bottom:

Cervical spine= 7 vertebrae that make up your neck

cervical vertebrae

Thoracic spine= 12 vertebrae in upper- and mid-back

thoracic vertebrae

Lumbar spine= 5 vertebrae in lower back

lumbar vertebrae

Sacrum= fused vertebrae at the bottom of the spine, which make up the center of the pelvis

sacral vertebrae

These terms are things that back pain patients hear all the time, and may even have explained to them. But, in my experience, there’s a big difference between having a doctor mention these things to you in passing—in an appointment where you’re scared of what he or she might diagnose you with—and learning something in a calm academic setting.

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The spine is just one example– there are so many different aspects of our physical being that sound complicated, even scary, when explained by a doctor, but look simple– and interesting– when broken down into smaller categories.

It’s helped me immeasurably to begin to understand this. Having a “second side of the coin” to flip to means it’s easier for me to change my perspective on the physical realities I sometimes can’t change.

Now I can’t think about how much something hurts without thinking about the fantastic nature of how it hurts. The fact that I have a bone, with muscles attached to it, with nerves that let those muscles communicate with this fantastic brain I have—it’s all pretty incredible.

Uncategorized

Favorite Posts from My First Year of Blogging: Part One

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When I first started blogging, I had no idea if anyone would actually read what I had written.  I tried out all different types of posts, including more journal-like entries, pictures, and recipes, as I tried to figure out what type of blog mine would be.

Hitting “Publish” on each one of those early posts was such an adventure for me.  I got so excited about each new “Like” and each new follower (actually, I still do).  And each new comment totally made my day.

It’s fun to look back now and see how the blog has evolved.  Each one of my posts was a learning experiment, and each supportive comment I got was an inspiration, helping me to figure out the direction I wanted my blog to go in.

With that in mind, I wanted to include this little timeline of my favorite posts of the past year.  If you’re a newer reader, you probably haven’t seen most of these posts.  And if you’re an older reader, I’m hoping you might remember some of these posts as fondly as I do.

As always, I am curious what you think.  Was there a particular post that resonated with you, or a certain topic you’d like to know more about?  Let me know!

December 2012

A little bit more about my story—A slightly longer version of my story than what you’ll find on my About Me page.

The Pain Clinic—The story of my very disappointing experience at a highly-regarded pain clinic with a months-long waitlist.

Coffee: A Great Tool for Dealing with Chronic Pain—I am obsessed with coffee, and I swear it helps with my level of pain.  I got so sick of seeing so many “alternative health” sites post warnings about the dangers of coffee, without acknowledging some of its potential benefits.  So I wrote this.Photo12280915

Have you Ever Tried Yoga?  This is meant to be a bit tongue-in-cheek.  Please take it with a grain of salt. :)

Names for chronic pain—This is one of the first posts I wrote, to lay a foundation for the topics I would be writing about later.  It outlines some of the various terms that medical professionals use to describe chronic pain states.

Some of the terms are really helpful and interesting; others are unhelpful, or possibly even damaging to the patient’s chances of getting real help.  It’s good to be aware of both.

Christmas 2012— Just photos

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January 2013

Why You Should Learn a Little Anatomy— Please read this one.  I really think it’s great :)

February 2013

Violins and enhanced sensory maps – about how the same parts of our nervous systems that are responsible for talent and learning are also the parts that can cause us to develop chronic pain conditions.  Pain and talent might be two sides of the same coin.

violin on side

How to Talk about Pain: Central Hypersensitivity– I am always so happy when I read articles by a researcher who really gets it.

Know Your Enemy—I stumbled across an opinion piece on Medscape.com written by a rheumatologist who says he intentionally “weeds” fibromyalgia patients out of his practice because they do not “interest” him.

A Post for Aaron Swartz — In honor of a generous spirit and Internet pioneer.

aaron swartz flickr

So… I Lost an Ovary—The title of this one is pretty self-explanatory.  Ugh, what an awful month last February was.

Beware the Red Herring—Looking at how some medical issues—and the pseudoscientific fads that accompany them—can obscure other more important issues.

That’s it for Part One of this look back.  Stay tuned for Part Two!

Photo Credits:

Uncategorized

Clinical Trials Looking for Participants with Fibromyalgia

Have you ever thought about participating in a clinical trial?  I’ve never done it myself, but I’ve always wanted to.  It’s a way to talk to people who are studying your condition, receive free medical examinations/testing, free medication, and possibly earn some money.  On top of all that, you’ll be helping to further our current understanding of fibromyalgia.  

I was just Googling random things today, like I always do, when I came upon these sites which list research studies in need of participants.  Most of the studies listed are in the US, but there are several listed in other countries as well.  

It’s also pretty reassuring, for those who have been brushed off by doctors and told there is no such thing as fibromyalgia, to see how many different groups are trying to study it.  

US and other countries:

http://www.centerwatch.com/clinical-trials/listings/condition/218/fibromyalgia

http://clinicaltrials.gov/ct/search?term=fibromyalgia

http://www.fmaware.org/PageServer3958.html

http://fmcpaware.org/clinical-trials2.html

UK:

http://www.nhs.uk/Conditions/Fibromyalgia/Pages/clinical-trial.aspx

http://www.fibromyalgia-associationuk.org/information-packs-mainmenu-58/all-articles/41-medicalandtrials

Canada:

http://clinicaltrialscanada.com/patients/default.asp?pID=5

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There are definitely other sites that list this type of information, so if you don’t find anything close to you, keep looking!

Also, here is some background info on the ins and outs of participating in research trials, from the National Fibromyalgia Association.  

Hope this information was helpful!

Uncategorized

The Benefits of Acute Stress for People in Pain

This was a really thought-provoking article from Neil Pearson on balancing acute versus chronic stress in the body.  While chronic stress is harmful on the body, acute stress actually has a lot of benefits.  Pearson explains,

“If you want to make a muscle stronger, use it more. If you want to grow more tolerant of an irritating or bothersome sensation or experience, step up to it. Face it. In time, it will bother you less. Try playing a string instrument for the first time, and feel the intense pain from pushing down strings with your fingertips. Keep doing it and your body will adapt, even creating a callous as a protective response, just like woodworkers and carpenters have on their hands and dancers have on their feet. In other words, when you stress your body, typically it responds by being better able to tolerate that stress next time.”

His advice is:

“Create acute stress while limiting the chronic stress of a flare-up: Make a daily plan to try an activity (or part of an activity) you want to do, but do it while you do your very best to keep your breathing even, your body tension low (only use as much as you need for the activity), and your stress level as low as possible.”

I thought this was great advice.  So often we get the message that all stress is bad; that in order to be healthy, you must eliminate all sources of stress in your life.  I think some of this advice is a little overblown– you’re never going to be able to cut out everything that stresses you out from your life, and if you are, you probably won’t be very engaged with the world.

Instead, I think it’s best to strike a balance between eliminating unnecessary stresses and learning to handle the ones you aren’t going to be able to control.  One way to do this is to becoming more conscious of acute stress– the pounding of your heart during exercise, the strain on your muscles when you lift a heavy weight.  These are all stresses that can help you grow in a positive direction and, unlike chronic stress, they have an endpoint.  When you learn to observe acute stress in a mindful way, it can help to put chronic stress in a different perspective.