{NHBPM Day 8} Come on, Eileen: A Letter to My EDS

I’ve recently decided that giving my EDS a name will help me focus my energy on combatting it in any way I can. Instead of being frustrated at the vast array of symptoms I experience in a vague, unproductive way, I’ve been able to sigh and say, “Come on, Eileen! Cut me some slack!” in an exasperated tone of voice, and even if the symptoms don’t let up, I’ve emotionally separated my disease from my self. As this flare rolls on and on, I’m finding it ever more helpful to give Eileen a good talking to, and then getting on with my life–leaving her by the wayside. Thus, a letter to my friend (frenemy) Eileen, my Ehlers Danlos Syndrome.

Dear Eileen,

It’s been a long road for the two of us. I’m not quite sure how to say this, but Eileen, my dear, I’m breaking things off. You should understand that it’s me, not you–I feel like I’ve grown up enough to go along on this road without you, and you’ve begun to hold me back.

When we first met 11 years ago, I don’t think anyone could have predicted the way things would go between us. I wasn’t quite sure what kind of friend you’d be, but you seemed persistent in trying to get to know me, and I couldn’t say no. I have to tell you that you’re kind of clingy (don’t take it personally). You started off only mildly annoying, I’ll give you that; you only made me stop writing every few minutes in class throughout middle school to snap my wrists back in place, but the only other option was to fuse those tiny bones together so I didn’t mind terribly much.

It was only until I hadn’t grown for two years but was still getting growing pains at night, crying as my mom smoothed Sore Muscle Rub over my aching body, that I began to understand just how attached to me you really were. Now that you’re threatening to take even more of my mobility and freedom, it’s time to get off my back.

You and I both know that this is a destructive relationship, and things just aren’t working out between us. You’re keeping me from living my life to the fullest, and I think it’s time you moved on.

What I’m about to tell you is so sixty years ago, but humor me for a sec: I think what you really need is a man. Yeah, that’s right, I’ve said it. You need a man who understands you, who completes you! This man– let’s call him Trey for short (though one day we’ll all know him not as Treatment but as Cure)– this Trey will suit you much better than I ever could. You don’t just need a friend to cling to for support, you need a rock who will be there for you when I never could.

Trey has to be strong and comprehensive, much more sophisticated and understanding than the 5% management kind of friendship I can give you. At any given time, I can only really help you about 5%: I can get up to 30% with pain medications, then another 5% with a heating pad, maybe 10% more with some magical Biofreeze or Tiger Balm, and if I have to move any body part I can help you another 25% of the way by adding some armor! But you deserve more. You deserve a man who can take you by the hand and make you completely satisfied–and I mean really satisfied: this Trey would give you effective collagen.

I know, I know, you don’t believe it can happen, but I do! I have faith that in our lifetime, the power of science will discover a way to give you exactly what you want and precisely what you need, and you won’t need me anymore.

So that’s it, Eileen. I’m declaring our 11-year frenemy-ship over, though I imagine you’ll try to hang around for a while, at least. It’s ok, I’m patient.

All my love,

Rachel

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{NHBPM Day 4} What’s in your backpack every day?

Last week I went to the library with my adviser to grab some books on the woman I’m studying, and she remarked that I was carrying quite a heavy-looking backpack. I laughed and sort of sighed, not ready to go into why I have to carry my backpack with me everywhere (I didn’t bother to mention that it actually isn’t that heavy, and that actually if it were heavy I wouldn’t be able to lift and/or wear it).

But now I get to tell you all what’s in my backpack! And I’ve added pictures!

Tiger Balm pain patches, Joint Relief gel with arnica, and my all-time favorite Badger Arnica blend Sore Joint Rub

Arnica is my hero. If something says Arnica on it, I will snatch it up because it is magical. I first discovered arnica when I had my wisdom teeth extracted, and when we applied a salve to my cheeks they didn’t even begin to bruise. I kid you not. If I’m too achy to go to sleep, I reach for whatever arnica-containing magic is closest to my bed and smooth it over my joints (fingers first, so they get taken care of while they’re taking care of the other joints). It reminds me of the eucalyptus spearmint muscle-soothing lotion my mom used to rub on my aching joints every night when we thought it was just growing pains (note to future parents: growing pains should stop at around age 10. My “growing pains” brought me to tears every night for 18 years, and now we finally know the cause).

Tiger Balm is very similar, and just as magical. I put a patch on my most troublesome shoulder when the salve combined with pain meds just won’t cut it so I can go out into the world and be mobile. The only downside to these patches is the price, but I splurge because they stay on better than the store brand equivalent (although to be fair, even the stickage on these could use a little work).

Two pairs of compression gloves and a roll of waterproof Nexcare tape for fingers.

I recently started wearing compression gloves almost constantly and they have made a world of difference. The problem with EDS is that once you brace one joint, the joints around it tend to overcompensate and then they start to need bracing. That’s what has been happening with my wrists: I immobilize them, and my fingers have to do all the work and have moved from simply hyperextending as overcompensation to subluxing and then, as of this morning, to dislocating.

These gloves provide compression and warmth to my finicky fingers and apparently make me look tough. I’ll take it.

Unfortunately, they only go up just past the second knuckle, and my first knuckles are the ones that are typically the least stable. To help with those, I keep a roll of waterproof bandage tape in my backpack and wrap it a few times around the joint to help support it. This kind of tape doesn’t bother my skin because it’s latex-free (I have a latex allergy. Didn’t I tell you? Right, right, I can’t keep track of my mounting allergies either) and since it’s meant to go over wounds, it peels off easily from my stretchy skin.

Elbow brace, neutral compression arm sleeve, and a variety of wrist braces.

I’m usually wearing some or all of these items, and usually on both sides, but I do like to carry extras if I can just in case something happens (like that time I spilled hot chocolate all over my wrist brace… Seriously though, for klutzes like me these things are incredible life-savers like that!). The blue compression sleeve is wonderful for days when my elbow isn’t bothering me very much, because it provides neutral warmth, which is actually magical. Neutral warmth (as explained to me by my incredible mother) dampens hyper-irritation caused by chronic inflammation of nerve endings, thereby reducing pain! It also is generally quite soothing and provides your nerves with a sense of stability, regardless of how much stability garments like this sleeve provide. It’s essentially the same phenomenon as babies who like to be swaddled really tightly, only on a smaller scale. In addition, light compression found in things like socks helps maintain your body’s resting temperature which prevents the exacerbation of aches and pains. Love it.

A selection of knee braces and an always-ready emergency sling.

Last but not least, I give you a few of the knee braces I wear and carry with me, depending on the day. I do have some bulkier ones, but my kneecaps are so hypermobile that I really only use braces for that neutral warmth phenomenon since anything that restricts my patella’s range of motion will actually cause morepain than it does when it subluxes.

I also make sure to always carry a sling with me, because my shoulders have recently been acting up. I’m so ready for this upper-body flare to be over, especially since today I dislocated my shoulder just standing at a crosswalk, and a block later my right patella subluxed, and then my right ankle subluxed. At any rate, I was glad to have my sling so that I could temporarily fix that problem before attending to my right leg, and that prevented me from causing any more pain to my shoulder! Excellent!

 

So that is why I carry around my backpack everywhere: the front pocket is for bracing and other supplies, and the back holds my books and laptop. I haven’t included my ankle braces because I wear them all the time, and my meds are sort of a given so I didn’t bother taking a picture of those (though I have seen some rather artful pictures on Instagram of all the meds you spoonies are on and I may have to give that a go one of these days!). I’ve turned into an armed warrior lately, and although the braces put people off (especially the hand/wrist ones) I’m slowly learning to reshape my self-image to include the braces so that I can carry on as usual and forget the stares.   I haven’t seen anyone from back home since my “transformation” (in high school things weren’t this bad; I’ve only had to include my armor as part of my daily wardrobe for the last two months or so), and I don’t really want to. I don’t want to explain. I’m ready for this to be my norm, for me to stop having to answer questions from classmates, professors, or even strangers. Do they ever stop? I’m crossing my fingers (not literally).

 

{NHBPM Day 3} A Conversation with a Doctor

I have already written about a very disappointing sequence of conversations with my doctor(s) here, so today instead of copping out and just giving you that link to read a very long, very winding, very stream-of-consciousness post that I needed to get off my chest one day, I will instead write about a magical, imaginary doctor’s appointment that I hope to have one day.

The scenario I always imagine in my head plays out like this: I’ve spent a good hour or two a few days before the appointment brushing up on my research on EDS and other conditions that have the same symptoms I’ve been experiencing, and I’ve compiled a packet with all the relevant information highlighted and annotated (I really do this. Overkill? Potentially.). The day of the appointment, I am sure to get there at least 15 minutes early on the off-chance they are running ahead of schedule and I can get an extra few minutes with my doctor.

I hand over my packet to my doctor when she asks for my oral history, as a way to supplement and complement the disjointed narrative flowing from my mouth that never sounds the way I’ve rehearsed. This time, though, I hit all of my major points: new developments since my last appointment (new areas of pain, dislocation, or hyperextension; recent dislocations or subluxations), improvements, and medication updates. Even though I’ve been thorough in my oral history, the doctor takes a moment to read a few of the highlighted pages I have pointed out to her that might help us as our conversation progresses.

The doctor then asks me how my life is going. How am I feeling? How am I handling any new changes or alterations to my lifestyle? Am I satisfied with our current treatment plan?

And then.

WAIT FOR IT.

And then the doctor listens to my responses.

Ah, yes. Listens.

The doctor listens, possibly jots down some notes when she has an idea for how to fix a problem I have named, and then takes a deep breath before responding.

That deep breath will enable her to clear her mind from the day’s appointments, and focus on the problems at hand. I don’t mind being a puzzle, I really don’t, but I don’t like being a puzzle piece. Think of me and my symptoms as its own separate puzzle; don’t approach my case as one of all the other puzzle pieces from the day’s–or week’s–giant puzzle that is the life of a doctor.

So after this breath, the doctor will propose some solutions to my problems, and together we will pick the one that works best for me at that time. Maybe that will involve more tests, maybe a new specialist, or maybe just a new brace, but we will have decided together.

And then I would like to schedule a follow-up as soon as is reasonable to make sure that this new solution is working or to share progress updates.

What a crazy, incredible dream that appointment would be.

 

The Importance of Labels

I am writing this instead of writing a paper, but I need to get these words out so that my brain has some space to breathe.

This weekend I traveled with my family to upstate New York for my grandfather’s memorial service. It was a 4.5 hour drive to the church from our house, plus the hour from my dorm to our house, so all told I spent 11 hours in the car this weekend. The memorial service was pretty nice for the most part, aside from a dunce of a pastor who was very disappointed when no one wanted to get up and say something they remembered about grandpa after my Aunt Nancy delivered her lovely, heartwarming eulogy. He said, and I quote, “You know, when they print a short obituary in the newspaper for a man who was almost 92 years old, a lot is missing in that obituary and it’s our job today to widen it, to tell the story. [silence and sniffling] No one? No one? Well, fine then.”

That was so inappropriate for so many reasons, but I’m sure you can figure them out.

The next morning I woke up stiff and sore from the motel bed but didn’t have much opportunity to loosen up or stretch because the room was freezing, and it was even colder outside. I bundled up and hurried to the car for the following 5 hours, where I actually managed to doze off for once.

And that, I believe, was the source of my problems. I wound up in urgent care Monday (yesterday) night, having pinched my piriformis, sciatic nerve, and something (another nerve/muscle combo) in my neck all on my left side. I was in tears as the nurse examined me, and by the time the only doctor on staff came in my room all she could say was, “What do you want me to do for you?”

The car has never been a good place for me, but sitting in variations on the same position for 11 hours over the course of three days exacerbated the effects of stress and cold weather on my already loose joints, and put my joints in the perfect position to pinch important things.

Luckily I woke up this morning feeling worlds better with the help of some pain medication, lots of heat, and some more crying. Unfortunately, that state of feeling better had to come after I awoke at 3am having subluxated my right SI joint, dislocated my left first toe, and subluxated my right ankle (the one I dislocated & subsequently sprained in late April).

So I was ready to do some damage control at physical therapy today for sure.

I was doing so well – my PT had me on super low resistance exercises for my shoulders (we’re talking the yellow theraband, here) and a warmup of 10 minutes on the bike. Things were moving along well! This set me back a month, and the PT assistant who saw me today could tell I was disappointed.

I was disappointed on one level, but (dare I say it) relieved on another level. Like I said in my last post, sometimes I don’t feel like I’m chronically ill and that makes me feel guilty for not being as sick or in as much pain as the other people who are doing incredible things despite their illnesses. So I guess I asked for it: let me tell you, I was in pain. My PT completely understood, and gave me some advice on how to stay on top of the cycle of pain so that even if I am feeling well, I have to take the medication so that hell doesn’t break loose like it did last night. I am so lucky that she can fully understand the difference between chronic and acute pain, and that we’re on the same page when it comes to treatment: she knows that she’s treating for the acute pain, so that dislocations and subluxations don’t happen nearly as frequently, so that we can get down to the chronic level and work from there.

And this praise of my wonderful PT brings me to the source of my frustration this evening: my PCP. I was going to rant on twitter with a multitude of 140-character mini-complaints, but I decided those would be better fleshed out here in full, if only for my own satisfaction and stress release.

My PCP, for the sake of this blog hereby titled Dr. M, has been reluctant to listen to me from the start. My freshman year I came to her complaining of increased joint pain, and she told me that it was because I had stopped dancing. I probed a little further on my next visit, and she admitted that I was a “little” hypermobile, but that it was the result of 18 years of ballet and that to alleviate the pain I should do some rigorous exercise.

When I came in next, it was for a subluxation of my SI joint that occurred while I was exercising. I brought in my research on Ehlers-Danlos Syndrome, and she didn’t even look at it. I went down the list of symptoms and diagnosis factors with her and she did some blood work to test for rheumatoid arthritis and referred me to the rheumatologist, who was absolutely no help whatsoever. She was brusque, disbelieving, and hadn’t even bothered to look in to connective tissue disorders. When she asked me to demonstrate one of the Beighton criteria by bending my thumb toward my forearm, she asked me to bend it backwards, with my palm facing the sky.

Well of course it wouldn’t touch my forearm that way! I couldn’t think fast enough to contradict or correct her because she was so cold and thoughtless.

When I followed up with Dr. M shortly thereafter, I needed her to believe me. I needed her to put a name on the pain that wouldn’t go away, the pain that kept me out of class some days, the pain that made me hard to live or be friends with. I was desperate for a diagnosis because the psychological pain of not having answers was getting to be unbearable. I think many chronically ill patients would agree with me when I say that the psychological pain of remaining undiagnosed was sometimes worse than the physical pain of the disease itself.

I spent nearly every night on the EDS message boards on the Inspire site, adding to my growing pile of evidence that EDS fit my symptoms perfectly. Even the “colors” of the disorder were perfect: zebra stripes, because doctors are taught to look for horses when they hear hoofbeats, not zebras, and thus leave many unusual or rare diseases undiagnosed while ruling out the more common ones.

I told Dr. M all this when I came to her nearly in tears, begging for a diagnosis, but she didn’t give in. She still hasn’t, in fact. Her excuses vary each and every time I see her: don’t I want a clear health record for health insurance? surely I want a low insurance rate? I must be worried about being discriminated against by potential employers, right?

Yes, yes, and yes. Yes to all the concerns about having a chronic, incurable illness. Yes, I’m worried about being discriminated against (I already have been, but that’s another story for another day) and I’m worried that if Obama doesn’t win I’ll have to scrounge together health insurance where I can find it once I turn 26 if I am diagnosed with a preexisting condition.

But those concerns are nothing compared to the weight of being undiagnosed. Unofficially, I have been diagnosed with Ehlers-Danlos Syndrome, Hypermobility type by a geneticist friend, my physical therapist, my pediatrician, and both urgent care doctors I have seen, but the diagnosis on my chart is “Joint Hypermobility Syndrome” (yes, yes, I know that’s a generalized way of saying EDS, but try telling that to Dr. M!). This means that I start shaking in the waiting room every time I see Dr. M because I’m worried she won’t listen to me yet again. I get stressed and grumpy and generally anxious in the days leading up to an appointment with her because I’m bracing myself for another confrontation where I will have to lose, again, as the “uneducated” patient without a medical degree.

So this is what I am facing as I anxiously await my Friday appointment with Dr. M to “reevaluate” my usage of tramadol. Let’s be completely clear: tramadol turned me back into a human after months of pain at the level where I couldn’t even wrap myself in a blanket for the pressure it placed on my aching joints. Tramadol is an opiate agonist, which means that there are concerns with taking it as a long-term pain medication, and I’m completely aware of those concerns. Since it changes the way your brain experiences pain, every time the dosage wears off you can go into a mild withdrawal state where the pain actually feels worse than it would otherwise. This is the issue of dependence, which all EDS literature states is not dangerous. Dependence is different from addiction, which is very dangerous. These are nuances that Dr. M doesn’t understand.

The first appointment when I brought up EDS, her response was, “Why do you need a diagnosis for a disease that has no treatment? You’re taking ibuprofen for the pain, and our only options for managing the symptoms are that or narcotics, so I don’t see the point.”

Ibuprofen or narcotics for pain management. Oh, what’s that you say? But I’m on a medication other than ibuprofen that is also not a narcotic? You’re right, that was a fluke of the urgent care doctor last month. She prescribed it, understanding the different methods of treating chronic pain.

Why is it so hard for Dr. M to understand? What can I do differently to help her understand?

This life-saving fluke may very well be revoked from me on Friday if I can’t shake my fears long enough to A) explain myself or B) request a new PCP (I’m requesting a new one after Friday regardless, no worries there).

This afternoon, my PT said a little word that altered the course of my day, changing it from bad to better. She said, “I know this flare was hard, but you stay on top of that medication and we’ll do our best on our part to bring you back to baseline.” She called what happened to me yesterday a flare. A flare! That word is used to describe increased RA symptoms, but I had only ever applied it to mine in my head, afraid that someone would call me out for being a fraud (there’s another f-word I’m seeing in my mental space more often lately…have to take care of that.).

She put a name to that “incident” that legitimized my pain and frustration, and I’m sure she didn’t even do it on purpose! The magic in this one little word is probably hard to comprehend for someone who neither has a chronic illness nor is a caregiver for a spoonie patient, which I suspect is Dr. M’s problem. But imagine how much it would mean to have the words “Ehlers-Danlos Syndrome” come out of her mouth in relation to me, to a final diagnosis! Sure, I’ve been living with an effective diagnosis, and she has intimated that if it weren’t for her own concerns she would write it on paper, but it would be like that commercial for Claritin where the picture is shown in grey until the subject takes the Claritin and sees the world in color: my world could be in color. I would be “official” and I would never have to deal with feelings of inadequacy or fraudulence again. I could advocate for others in a similar situation without hiding behind a façade of wellness, and I could let this new advocacy voice perform at full capacity.

I should note, as an addendum, that every specialist I have seen has interpreted the official diagnosis of Joint Hypermobility Syndrome as EDS, which is why I can go about my life as if my PCP had made the diagnosis, since it would seem that every medical professional except her is up to date on their terminology. So I call it by its more well-known name, and hope that one day Dr. M will, too.

Why not me? The Guilt of Relative Health (or, Thriver’s Guilt)

This weekend I put off doing homework for a few days and decided on the spur of the moment to watch the Stanford Medicine X conference livestream. I had never heard about it before the hashtag #MedX kept popping up on my twitter feed, and when I looked into it a little further I discovered that the topic of the conference was something that is close to home: social media, patient advocacy, and patient-centered health care.

These are broad strokes, of course, to summarize the key themes I took away from this well-designed three-day conference, because those are the points I have been thinking about this week. And those are the themes that unlocked the latent voice of the patient advocate in me.

For years I wanted to go to medical school. I thought that was the most esteemed route, the path that would lead me to the only place where I could learn something new every day, teach others, and change people’s lives. I graduated valedictorian of my high school class, so no one was surprised when I proclaimed that I wanted to be a neurosurgeon.

And then one day I fainted at the sight of blood. And I fainted again a few days after that when I cut my finger with a pair of scissors. How ridiculous! A body that couldn’t bear the sight of blood, no matter how adamant its brain protested. Honestly, have you ever heard of something so absurd? But that was my new reality, and I turned my dream elsewhere as I stumbled through freshman fall, lost and unsure of how I could plan my life so I could make a difference – outside of the operating room.

Luckily I didn’t take very long to embrace the key tenets of a liberal arts education, and I found myself swept up in learning for the sake of learning, for expanding my world view without a concrete end point in mind. Soon I did manage to formulate a plan, however, that involved copious travel, working for the State Department, and championing women’s rights in Afghanistan. Or something along those lines. I was living a new dream, one where I studied as many languages as possible, buried my head in Foreign Policy back issues, and never missed a meeting of the Community Action Committee at the Institute of Politics.

My health problems began to catch up with me, and with each subsequent blood test, doctor’s visit, or hour of frustrating online research, I took solace in the literature classics that had been my refuge between high school chemistry exams. I rediscovered my love of analyzing literature and understanding their historical context, which landed me in my current position as a History and Literature major. And as someone without a solid life plan.

I don’t mean to soliloquize about my “college years” (after all, I’m only 21) – this is all just to say that I have spent a lot of time trying to get to know myself and understand where I’m headed. With every shift in interest, I’ve always constructed a new plan, a new shape for my identity, and last weekend’s conference had me thinking about where my identity is headed next.

Who am I?

I am first and foremost a daughter, then an older sister, then a best friend. A student and a dancer, then a student and a singer. A roommate and classmate. And then: a patient. A chronic patient in search of answers, treatments, solutions, best practices.

It is becoming harder and harder to separate all of these facets of my identity, as is usually the case once one reaches adulthood, I imagine. I can’t hide my pain from my roommates anymore, nor from the women in my choir. Every time I ask someone to help me open the door or lift my backpack from the floor, I feel a piece of the 19-year old student slipping away. I’m not the same person my roommate met two years ago, and I don’t know what I look like in her eyes. Does she understand that I’m not making any of this up? That my increasing doctor’s visits aren’t due to my increasing hypochondria, but instead to an increase in symptoms? Who does she see? It used to be relatively simple to guess: I was a book-loving introvert who loved to sing in the shower and talked way too long about the beautiful sunset I saw on my stroll along the Charles. But now? Who am I?

On our annual retreat this year, I told the 45 young women in my choir that I am officially disabled. We have a section of the two-day retreat where people have the opportunity to speak about how much the choir means to them (we’re a tight-knit group), and something inside me was moved to get up and tell them my story. When I finished, there was not a dry eye in the room, and I sat down stunned. How had I just moved people like that? I have formal training as an actress in musical theatre, but that was no performance. They had reacted to my genuine story, my heartfelt emotion and gratitude for their never-ending support. I told them about my illness because I wanted to tell them how much they all mean to me, that their smiles and hugs and displays of sisterly affection are sometimes the only things that propel me out of bed in the morning, even if they never knew.

I got lucky: after I told them my story, no one treated me differently. A few girls came up to me and told me that they never knew what I had been going through, and I received a few text messages from girls saying that they wanted to be like me when they “grew up”, but when we were back at rehearsal, there was no pity or fear in anyone’s eyes.

Apparently, I’m a role model.

But in the wake of hearing so many incredible stories about chronically ill patients at Med X, I can’t help but think that I’m not sick enough to be a role model. There are so many other people who are living their lives despite really difficult illness, and compared to them I look healthy. Sure, I have a chronic illness, but I can walk, most days I make it to class, I get to see my friends almost every day, and I sing in and am on the executive committee of a student-run collegiate choir.

Why do I get to do these things when other people struggle to make it to the bathroom? Who am I to have these opportunities in between dealing with my illness? 

Recognizing my abilities in my disabled body has had the double-edged effect of making me so grateful for the blessings I have been given and also making me feel so guilty for them. My mind wants to tell me that I’m a fraud when I have a day at a 3 on the pain scale, and so I’m momentarily relieved when I dislocate my shoulder rolling out of bed, or I pinch my piriformis walking down the street, because then I know that I’m not making this up. And yet these things are only a fraction of what other spoonies go through. 

Who am I? How can I tell people I’m sick when I have a good day? How can I believe my own symptoms when they disappear for a day, or an hour? What is my new reality this time?

I sometimes feel like I’m waiting for the other shoe to drop, and in effect, I really am. My doctors unfortunately do not take the time to research my case (except for my wonderful physical therapist), so every time I see them and request a new test or exam, they find new conclusive evidence to support my diagnosis, and this leads me to believe that we will continue to find more problems. This is not to say that I want those problems! I don’t, believe me. I really still harbor that dream of traveling the world and saving lives and at this point it’s looking like that could only happen inch by inch.

But this brings me back to last weekend, and to when I reconciled my guilt and my abilities. I realized that there is a reason that I am going to graduate from college and work in academia instead of living my life from my bed: I get to fight for those who can’t. I don’t know how I will do this, but I know that there is a reason that this struggle has been placed on my heart and in the front of my mind, and that I will find a way.

This seems like big thinking in a short period of time, I know. But I’m a dreamer. I tend to think big, and I’m not willing to scale this one down. I think I will figure out how to get there, how to become a patient advocate for myself and others. I think I can.

And I’m not quite used to feeling guilty for not being in pain sometimes, or not having to reduce my shoulders 20+ times a day, but I think that will come too. I think I’ll figure out how to deal with the pain that I do have without looking for more, and perhaps that will come when my doctors finally take the diagnosis they have written on my chart and believe it themselves so I can start believing it as well.

An Update and a Plan

The first few weeks of school always bring with them a fair share of chaos, lack of sleep, and stress, and this year was no different.

I’m the co-manager of a quadrennial choral festival to be held in February, which means meetings began tout de suite – before my co-manager had even finished unpacking! We’re making progress, and grant applications are due next month, so that’s sort of hanging around in the back of mind for now. I imagine this long-term project will hang around like this all year – one of those things that always makes you go, “There must be something I should be doing right now!”

Shortly thereafter, in the beginning of September, my grandfather was admitted to the hospital with intense pain in his abdomen. They discovered that his kidneys were failing, and that his slow-growing prostate cancer had likely metastasized to other parts of his body. He remained in the hospital for about a week and a half, during which time my mom traveled to visit him in upstate New York and take turns caring for my grandmother with her three sisters. He passed away peacefully on Monday, September 10th, surrounded by his daughters and wife. It was a rough week, and I didn’t attend any classes for fear that I would break down suddenly (I was also PMSing, which didn’t help one iota!), but I sang a lot with my choir and went to work as usual. We knew this was coming, so as a family we’ve been fortunate enough to work through the grief and sadness together, and all in all it was much easier than I expected. I know that he is resting peacefully and waiting for my grandmother to spend the rest of their lives together in a much less painful place!

The next day, I got the results of a full blood test that showed that I have mild kidney dysfunction, so I was taken off NSAIDs entirely (no reason to fear – the kidneys are amazing at restoring themselves, but this does mean that I can’t really take NSAIDs anymore). Unfortunately, without my pain managed I was pretty much useless. I was mostly immobile, grouchy, and generally depressed. Thankfully, yesterday I was prescribed a pain medication that works beautifully, but it makes me nauseous and dizzy until it wears off (so after six hours). I’ve been trying to find bland but nutritious foods that I can eat during those six hours to take the edge off the nausea without increasing it, and it looks like I’ll be munching on gluten-free table crackers and plain, lightly-salted rice cakes throughout the day. So far, it’s a small price to pay for the wonder of being nearly pain-free.

This past Thursday, September 13th was my 21st birthday. My school held a memorial for a young man in my year who committed suicide two weeks ago that day, so I didn’t do much celebrating (mostly crying, actually). It was cathartic, to say the least, but not exactly what I was expecting on my birthday. Needless to say, I was extremely excited to see this weekend come.

I have a three-hour makeup exam on Monday for which I am studying furiously, and I also have to write four more mini-book reviews before night’s end, so this weekend hasn’t been much better than this week! Studying is restful, though, and I really do enjoy writing the reviews, so although today was just as busy as the preceding days, it was a bit more enjoyable. I even got to take a nap (the dizziness was just getting to be too much).

This week has caused a set-back in my triathlon training goal, but I’m raring to go and create a plan that will work with my meds and food. I’m seeing a nutritionist for the first time in two weeks, and I couldn’t be more excited!! I finally am developing a care team: a doctor who understands the importance of pain (she’s different from my PCP – I think I’m switching to her for primary care because her proclamation of, “If this medication doesn’t work, there are tons of alternatives we can try!” was a far cry from my PCP’s frustrating declaration, “Your only other option aside from NSAIDs is narcotics.”), a physical therapist who understands my limits and the importance of “no pain, thank you!”, and a nutritionist who can (hopefully) help me manage my apparent food intolerances and medication needs.

The year is shaping up to be an eventful one, that’s for sure!

On My Bookshelf: Training Reads!

I’m working on three books that I believe will help me in my triathlon pursuit, and I’ll post my thoughts on each as I test the methods presented in each.

ChiRunning comes highly recommended from a few fellow EDSers and my PT, and I’m eager to attempt the technique! I have read about 75% of the book so far and from what I can tell the technique works primarily by making your core do most of the work in running, not your legs. The author explains how to make a “lean” work for you by taking the stress off your legs and transferring it to your abdominal muscles. It will take some serious mental and muscular retraining, but I’m willing to put in the effort and it will be a good way to ease into running. Even better, Dreyer advocates a “No pain, thank you!” approach to running that I am particularly keen on because that is exactly how I have to exercise: no pain, no gain can never be a motto of mine, because pain can lead to permanent damage on already-damaged tendons and ligaments!

Total Immersion Swimming uses a lot of the same alignment-focused exercise techniques as ChiRunning, which is great! Just like ChiRunning, Terry Laughlin explains how to lean on your torso when swimming the freestyle stroke to lift the hips, thereby making it a lot easier to sail through the water. The drills teach you how to adopt a “slippery” stroke to be more fishlike, and I really like that the book starts from square one so you can really retrain your brain to swim more efficiently and much more in alignment. Can’t wait to give it a shot!

Finally, to begin this mind-body wellness journey, I plan on starting Full Catastrophe Living tonight. It’s over 500 pages in print, so I opted for the Kindle version because I think I’ll want to have this on me at all times and because I can’t hold a 500+ -page book! Since I’m essentially starting from scratch in running and swimming, I hope that this will be the perfect time to adjust my mental habits and learn how to live more mindfully and less stressfully. In addition to the triathlon training plan, I’d really like to work in this book’s 8-week program (about 45 minutes a day of mindfulness training) to enhance my mental capacity to deal with pain and stress. They say that participating in triathlons quickly becomes a lifestyle, and I believe it! Here’s my shot at enhancing mine and hopefully gaining the kind of mind-body awareness and health that I’m seeking (and they say that mindfulness about life in general can help you lose weight! What a nice side-effect this all would be! :D).

A (Potential) Training Plan

After some Internet and book store searching, I have come across what looks like an easy, long-term training plan for beginner triathletes. With my body, I have to be especially careful to factor in extended periods away from training because I can count on the weather, hormones, or dislocations derailing my training plan.

At the moment, I plan on beginning Michael Pates’s 22-week Total Sprint Program at the beginning of the school year. I predict that a 22-week program will give me plenty of time repeat weeks as needed, back-track as needed, and generally give my body enough chance to adapt to the new strains I’m placing on it over the next year. I’m excited!!

Here’s what I need before I begin:

  • a pool! (there’s one at school so that’s why I’m waiting until the beginning of the school year in about three weeks)
  • Aerobars for my bike. I ride a 22-year-old road bike that belonged to my mom, and although eventually I would love to buy a new one, at this point I can only afford to add $130 Aerobars to make riding more comfortable over long distances. From what I hear, Aerobars keep my body aligned while I ride, and I plan on springing for a professional bike fit to make sure I’m doing everything possible to avoid injury and achy joints.
  • A wetsuit! My parents have agreed to buy a triathlon wetsuit for me for my birthday, and here’s why: My most unstable joints are my SI joints, pelvis, shoulders, and recently my elbows. The gentle compression of the neoprene suit will keep those major joints from making minute shifts while I swim, which is a contributor to next-day (or same-evening!) achiness and fatigue. I don’t expect the wetsuit to prevent subluxations (that would take a miracle!) but I do imagine that it will prevent small shifts in placement. I can wear neoprene braces for my wrists and ankles while I practice to stabilize those joints. If you have tips on buying a wetsuit, let me know!
  • some full-fledged motivation, which is where this blog comes in! 🙂