Connected Health Symposium 2012 Part 1: Where Are the Patients?

I was so fortunate to have been given the opportunity to attend the Connected Health Symposium in Boston on October 25th and 26th courtesy of a free pass from the WEGO Health Press Corps, and I would like to begin this post by telling you how grateful I was to be there. I watched Stanford Medicine X live virtually from my bed late September, and wanted nothing more than to be in that conference hall, experiencing the positive energy from the collaboration and discussion between patients, health care providers, and health start ups, so I jumped at the chance to attend this symposium barely 25 minutes away from my dorm. The tag line of the symposium was, “Where Innovators in Health Care, Technology, and Communications Connect”, and I was thrilled to be able to be a small part of the “Communications” contingent present at the conference as a “blogger”, as I began to have to introduce myself.

I didn’t begin my day Thursday introducing myself as a blogger; after all, 13 posts on a WordPress site does not a blogger make, and I felt I better belonged to the unspoken Patient category, so that’s what I called myself. I told a JD/MBA student and a fellow undergrad that I was there to blog about the conference and live tweet it to my fellow ePatients, and their faces fell. I could tell that they weren’t interested in that part of my story, so I quickly moved on to the WEGO Health aspect. The graduate student eventually did ask about my ePatient status, and I had the opportunity to explain what I had learned from MedX tweets and live coverage: an ePatient is “a patient who uses the Internet to gain information about their disease, and uses technology tools to aid in coping with their disease” (definition lengthened from an extremely helpful tweet from @HurtBlogger). I have to admit that I wasn’t expecting their stunned reaction – I thought the idea of the ePatient was well-known in the ehealth care world, but when I continued to get blank stares from the next five people to whom I explained the term, I started to understand what I was up against. No one inquired about what made me an ePatient (i.e., what kind of patient I was), which was surprising after having announced that what I do is talk about my illness online, in public!

It wasn’t even 8AM by the time I figured out that I wasn’t surrounded by likeminded ePatients and health activists, and as I settled into my seat at a table for the opening remarks, I started to reflect on my role as a patient-turned-blogger, and decided to proceed as both: I decided to tweet not just as a health activist but also as a person who has a stake in these conversations about the future of health care (I have discovered that the “blogger” and “patient” facets of me are inextricable: they each make the other better, for after all, what would I have to blog about if not being a patient?!).

Stage at the Imperial Ballroom at the Park Plaza Hotel, where the keynote speakers gave their addresses.

The first keynote address given by Juan Enriquez centered around the “Missing Measure” of health care: we need to measure the cost of imposing unnecessary regulations on drug advancements in terms of the number of lives that could have been saved while the FDA stalled new research. One of the more compelling examples he gave was about vaccinations. He remarked that producing effective vaccinations was not particularly attractive from a big pharma standpoint (if you immunize against diseases then people will stop needing care for that particular disease), but doing so made perfect sense from a societal standpoint. This opening address touched on one of the main themes of the day: Big Pharma versus society.

The second keynote from Dr. Sherry Turkle hit close to home when she discussed the “I share, therefore I am” sentiment of many social media devotees these days. The phrase refers to those who cannot feel an emotion before sharing it; it’s as if the act of sharing one’s feelings via twitter or Facebook legitimates them in one’s mind and body. We’re being shaped by the technology we’ve created, she remarked, adding that we’re hiding from each other even as we are constantly connected to each other: “Everyone’s in their own bubble, furiously connected to keywords and technology.”

I would like to add a positive spin to her mostly naysayer’s view of the capacity of technology to bring people together: instead of separating people who would otherwise interact face-to-face, technology (be it twitter, Facebook, Skype, or even gchat) unites people who would otherwise be unable to interact face-to-face, especially in the online patient community. Online interactions help relieve the pain of loneliness some chronically ill patients endure because they are too ill to leave their beds by connecting them to the world outside their own minds, and allowing them to share their problems and feelings with people other than their caregiver(s). This facet of the online community was not addressed in Dr. Turkle’s keynote, and it was also skipped over during first breakout session I attended.

I headed over to this first breakout session entitled, “Resolved: Online Patient Communities are an Effective Way to Deliver Care. A Symposium Debate” between Andrew Watson, MD (for), and Jeffrey Benabio, MD (against) and moderated by Alexandra Drane. I expected a rousing debate about the dangers of patient-led online communities, but in the end Dr. Benabio admitted that Dr. Watson’s position was the one he sided with most (it was actually fairly clear throughout the entire debate that Dr. Benabio wasn’t wholeheartedly against online patient communities).

One of my favorite parts of the debate was when Dr. Watson said that face-to-face clinics are not working, and that clinicians have a strong moral obligation to evolve with the understanding that online care does not equal scattered, inappropriate care. The argument boiled down to the potential for the spread of rumors, misdiagnoses, and inappropriate treatments among patients with similar conditions, and both sides agreed that there may be an opportunity for clinicians to get involved to help guide patient-led communities to correct information. To that end, I would point them to Health Tap, which was featured at MedX and consists of a purely online community of registered, vetted clinicians who can answer questions posed in the (free) fora with the added possibility of online patient-clinician meetings via Skype or another video conferencing platform for a fee.

But what I would caution against is the generalization of the patients who interact via patient-led online communities. Sure, there are plenty communities out there that involve pointing peers to new treatments and even new diagnoses, but the patients who seek those answers (in my experience) are savvy enough to understand that the final opinion is going to be their primary care doctor’s or their specialist’s. I would argue that the primary reason patients turn to online patient-led communities is for support, not new information, and that fact was discounted during this debate. Dr. Benabio used it in passing, saying something to the effect of, Sure, patients get valuable support online, but when it comes to the spread of misinformation, that support becomes harmful. (not a direct quote, just a paraphrase of a general argument he made)

There is a reason patients turn to the web to seek support and empathy and purposefully do not involve clinicians–we see enough clinicians in our day-to-day lives to make a clinician-free support community a necessity. And then there are  places like twitter, where patients and clinicians have the opportunity to interact on a more even playing field through the use of tweet chats and conference tweeting, and that kind of interaction is invaluable–it fosters respect for both sides of the equation and is something I have come to rely on for discussion and yes, information.

Dr. Benabio’s argument focused on the fact that there haven’t been any outcome-based studies on the benefits of online communities, and that in order to judge them like we judge other medical advancements then they should adhere to the tried-and-true test of an outcome-based study, but I believe that the results of any study can’t possibly address the kind of emotional and psychological benefit of interacting with people who are experiencing the same (or similar) life problems and challenges that you are. I even tweeted, “Wondering if the benefits of direct patient interaction will surface during this debate. #cHealth12” at one point, but they never did touch upon that point. Alicia Staley, a woman I admire greatly for her patient advocacy and insight into health care problems (@stales on twitter), stood up to discuss this point a bit more, and talked about how social media saved her life, but the moderator was being pushy and the debaters didn’t have a chance to respond fully. At that point, it was becoming clear that Dr. Benabio was pro-online patient communities, despite his prepared opposition, so they mostly wrapped up the debate and the two doctors agreed with each other.

Two of the events that followed stood in stark opposition to each other, and I would like to take the space of a separate post to discuss my reaction to both of them. Susannah Fox of Pew Internet Research gave her keynote address entitled, “The ‘e’ is for Engagement: the Latest Research on the e-Patient Revolution”, and then I attended a breakout session with a panel entitled, “You’re Talking to Me? Ensuring Patient Comprehension and Motivation.” While these two events did not directly follow each other on the agenda, I would like to raise them in contrast to each other in terms of their use patient-centered language and respect for patients, and discuss how the overall effect colored my view of the conference and of the rest of the presenters, and why I think we need more of one and less of the other.

Into the Ring

Where do I begin?  The last few weeks have been a whirlwind of physical and emotional changes to have me seriously considering my future and the progression of this disease.

A week and half ago I began to experience numbness and tingling in both of my  lower arms, wrists, and hands, to the point where I was dropping nearly everything and couldn’t hold a pen.  The accompanying pain was constantly on the forefront of my mind, and I became increasingly nervous as it continued to grow worse.  I was diagnosed with carpal tunnel, which is usually caused by structural change  and nerve damage within the wrist due to overuse. In my case, however, the nerve damage is most likely result of eleven years of continuous dislocations, and even with constant bracing, it is unlikely it can be reversed. I’ve been wearing splints constantly for the last week and a half, and the immobilization has got me thinking in whole new ways about the importance of touch and contact in social life.

As is frightfully common in Ehlers-Danlos, when one thing goes wrong others follow. With my wrists immobilized, my fingers have begun to become hypermobile, so I have to stabilize them the best I can with compression gloves designed for arthritis patients. These gloves leave only the tips of my fingers showing, the rest of my hands encased in protective armor. Someone remarked to me the other day that I looked like I was about to get into a fight or had just come from one, and I laughed, saying that I hoped they made me look tough.

Additionally, as of the last week, if I have to use my left arm for any significant amount of time, I have to brace both the elbow and the shoulder, in addition to the wrist and hand. And not even three days ago, I dislocated my right SI joint, and my right leg has been bothering me ever since. I’m not positive I reduced it fully, since my right leg still aches at its original level of pain, and my left leg has been having problems sympathetically. What this means is that I’m essentially braced head to toe: both ankles, knees, both wrists, both elbows, and one shoulder.

I am armored and ready for battle.

I’m protected from this battle that my body seems to be waging against me, and the opposition seems to get stronger every day.

What I realized recently (and this is even harder to say out loud into dictation software than it would be to manually write it down) is that I’ve been living in denial for the past three years. As the changes to my body (and my lifestyle) come more rapidly, I’m watching myself grow more and more disabled as the cumulative effects of this disease cause unavoidable, permanent damage. And so now that I have acknowledged that further change is not only inevitable but by all predictions imminent, I wait, knowing that bracing is not going to be a permanent solution, but it is a solution that allows me to go into battle fighting strong. I am ready for that fight, just as my friend remarked, and I’ve stopped allowing my armor to make me feel self-conscious about my body; instead, its constant, unavoidable presence is allowing me to face my disease and my progressing disability head on.

I don’t know why various parts of my body are choosing now to let me know that they can no longer handle the stress of daily living, but as the days go by and I lose more and more upper body function, and my lower body reminds me of its problems, I’m beginning to realize that there are lessons to be learned here and ideas to be fleshed out. The hardest part has been telling my friends that these sudden changes are permanent; the look in their eyes when I describe the meetings with the Accessibility Education Office and the new adaptations I’m in the process of making reminds me that this disease is scary, and that these physical changes are scary. Having lived with mild symptoms for so long, I had begun to think of EDS as mild and livable, though I rationally understood the potential for progression.

But it’s not even three months into the semester and this is the second blog post I’ve written about all the changes that my body is undergoing more rapidly than I could have imagined, and there is nothing I can do to stop it.

So I fasten my armor, and prepare for battle.

It’s going to have to be a battle of wills, a battle of mind and of temperament. I am preparing with books, conferences, and social media engagement, the only ways I know how. I just finished reading How to Be Sick by Toni Bernhard, a Buddhist-inspired guide on living with chronic illness, and I am excited to write about everything I’ve gleaned from it. On Thursday I attended the Connected Health Symposium in Boston (though Friday I was too sick to attend completely), and I will be writing about what I learned about health care and the potential (or lack thereof) for patient-centered care in the coming days. And I continue to learn from, be inspired by, and benefit from the incredible support of the spoonie social media community.

I’m worried and scared about what will refuse to work tomorrow or the next day, but I know that my fears will blow through just like this impending hurricane, and recognizing those fears does quite a bit to allay them.

I have a quote on a virtual sticky note perpetually up on my screen that contains this quote from an online source I found years ago: “Dance with EDS, don’t fight. Fighting an incurable, progressive disorder probably means you’ll lose. But dance with it, and you’ll find some grace. Some days you’ll lead, some days EDS will lead, but you’ll be dancing, and you can still cover most of the dance floor, just in smaller steps…”

Then I guess I’m a dancing warrior, because I’m not sure I can sit back like I have for the past 10 years and let symptoms come and go. At this point, I’ve let EDS lead a bit too long, and at least for now, I’m going into battle, braces tightened and gloves on.

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 Mortality and Faith

My mom, sister and I traveled four and a half hours both ways yesterday to visit my grandparents in upstate NY. We usually stay the weekend, but since I’m allergic to their home (it’s generations old and has goodness only knows how much mold and mildew) we stay overnight in a nearby bed-and-breakfast and join them for church the following morning. However, this weekend was move-in weekend for all the community colleges up near my grandparents, so my mom couldn’t book a room! Who would have thought that there would be demand for rooms in the middle of nowhere?! (And I really mean the middle of NOwhere – the closest things to my grandparents’ house are cornfields, an Amish farm, and more farms. We have to drive 15 miles to find coffee.)

So my mom drove a total of 9 hours yesterday so we could visit her parents (bless her heart).

My grandparents are a shadow of their former selves. They would periodically travel to visit us in Massachusetts when I was growing up, and I remember them napping on our sofas after their long drive, only to wake up and be ready to engage in the witty banter my mom’s family is known for. My grandfather would be the only one bantering, since my grandmother has never been fully “with it” according to my mom, but she would laugh dutifully and add her own one-liners, her hand on my grandfather’s knee and a twinkle in her eye.

My grandpa is going on 93 and my grandma 89; my mom was born when my grandma was in her forties, so I’ve never had young grandparents, which makes this so much harder. They have both have been hospitalized this year for dehydration, and are now both walking with some kind of assistance – a walker for grandma, a cane for grandpa. Grandpa has always been the caretaker for every ailment Grandma has suffered, but now he struggles with being unable to move fast enough to provide for her. Grandma re-told the story of Grandpa’s fainting earlier this year to me and my sister, saying, “I shook him and told him, ‘You can’t do this! You have to stay here to help me!'” I nearly cried.

They’ve been married for over 60 years. They have been through wars (my grandpa was a pilot in the Army Air Force), raised four children (my mom is the youngest of 4 daughters), and have met five great-grandchildren from several of their 13 grandchildren. Their love is tangible.

They look at each other and savor each moment together, realizing that they may not have many more of them. My grandpa has lost 30 pounds in the last 6 months, and my grandma’s heart can’t pump enough oxygen to her brain for her to remember which pills to take to keep it going for another day.

Their time on earth is limited, I know that. But I also know that what is waiting for them will be so much brighter, and I know that they are looking forward to it. They taught me what pure, unadulterated faith is. Their kitchen is filled with Bible verses on ceramic tiles, crocheted on potholders, embroidered on hand towels, and they pray before every meal. At each of their respective “stations” on the well-worn couch and arm chair, a Bible sits open to that day’s devotional verse, highlighted and peppered with notes in shorthand (my Grandma’s) or scrawling cursive (Grandpa’s).

It’s not that they declare their love of God for all to see, because even Matthew 6:6 has its place on a potholder (“But when you pray, go into your room, close the door and pray to your Father, who is unseen. Then your Father, who sees what is done in secret, will reward you.”). Instead, these verses all over the house serve as a constant reminder to my grandmother in her ailing memory that she is loved, cared for, and protected by the Ultimate Father. And when they are in pain or frustrated with their loss of mobility, they have a quick reminder of God’s protection and grace.

That’s comforting to me. That when they are gone, they will be with their Heavenly Father. It provides more than simple relief. It’s abiding peace. And on earth, His Word provides them (and me) with that same peace and comfort, despite daily battles with incurable pain. That alone is incredible, and something for which I am so thankful.

And when the conversation on the ride home turned to my sister’s atheism and my mom’s annoyance with organized religion, I silently prayed that one day they will be able to look back at the faith my grandparents demonstrated through their never-ending love and devotion to each other and to God and decide that they can accept God’s love for themselves. I pray, I pray, I pray.

A Letter to my Eight-Year Old Self: Thursday Faith Jam

My Dear Rachel,

It’s me, your 20-year old self (and if you’ll notice the date, I’m about to turn 21! I remember when double-digits was the milestone to live for…it’ll come soon enough, and in the meantime almost-nine is pretty great too.). I didn’t realize how much I would miss you!

I do, though, so I’m back – here to offer some words of advice about faith, love, and Christ.

You still fall asleep praying, right? Keep doing that, you’re doing it right. “Pray without ceasing,” 1 Thessalonians 5:17 tells us, and you’ve got it down. Don’t worry about getting on your knees or folding those hands – God hears you wherever you are, and praying is one sure-fire way to keep the bedbugs from biting. I know you worry about praying “right”, using the right words, the right tone of voice, at the right time of day, but you really don’t have to. God will listen no matter what. If you still feel self-conscious about praying though, pick up that “My Prayer Book” (you know, the little red one in the rolltop desk? It was Dad’s when he was little and he’ll let you use it) and flip through it. You’ll find some really cool ways to ask God for help.

Singing “Hide ‘Em in Your Heart” songs at the top of your lungs is a way to praise God – keep doing that! You’ll remember those songs for the rest of your life. And guess what? You don’t have to worry about having our many Hide ‘Em in Your Heart tapes changed into CDs for your future kids (don’t even roll your eyes, you’ve been worrying about that since you got your first CD!) – they will be online a long time before you have children of your own to share them with (and since I found them on Spotify, I’ve belted out my fair share of Galatians 5:22 and 1 Thessalonians 5:11; they never really left my heart).

Love your body. You have a beautiful young body, and don’t let Alex tell you otherwise in fourth grade (you’ll be in double-digits by then! Congrats!). Remember that God made you in His image and you are perfect just the way He made you, regardless of how fast you have to switch from a training bra to a real bra. Step away from that mirror, stop zeroing in on your pores, and get out and play!

Keep dancing and believing you will be a ballerina with all your heart. I’m not going to spoil anything for you, but just know that some day…some day your body won’t work as well as it used to. You’ll adapt, you’ll move on, and you’ll be just as happy, but take the time now to dance your heart out. Dance like no one is watching, Rach.

Actually, I take that back. Dance like only Jesus is watching, and let that comfort you all the way through your life.

On that note, it’s ok that sometimes being a Christian won’t be as comforting as everyone says. That doesn’t make you a bad person, it makes you human! It’s ok to ask hard questions about God and the Bible, and it’s ok to not believe everything Pastor Wendy says just because she’s the pastor. In fact (you’re going to love this), God wants us to ask questions and test out His Word for ourselves – it says so in Romans 12:2: Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.Proverbs 3:5 ends: “…never rely on what you think you know.” See? I’m telling you, you’re doing this Christian thing right. I know you do your best to abide by God’s commandments and I know that sometimes it’s harder to do the right thing than others, but God has given you a really good sense of right and wrong. Even when you feel as if you don’t belong, you are still a child of God. Jesus is watching over you and loves you. Just keep talking to God, listening, and reading His Word – stay curious! God will give you the answers, I promise.

Now if you do that, I’ll be in a different place, and I’m ok with that! I’ll let you in on a little secret: for a long time, I lost touch with Christ (oh, don’t worry – you’ll soon have a great Sunday School teacher who will explain the Trinity because you will raise your hand in front of the entire church and ask about the difference between the Father, the Son, and the Holy Spirit. Don’t cry when people laugh! [but it’s ok to cry, even when you’re big!] They only laugh because they wondered about that too and remember how wonderful the answer is. You’re not alone.). I lost touch with Christ because I couldn’t get in touch with Him for one reason or another. You’ll soon discover that Mom and Dad are humans too, and that their faith is not as rock-hard as you thought, and that will send your world spiraling. Please try not to let that discourage you, and just keep reading your Bible and praying unceasingly –  that would make me that happiest gal in the world (ok, that was a teensy spoiler, but it happens soon anyway).

I’ll make a long story short: college comes and you miss church, so you join the church choir and pour your heart out through song. Not long after that (a few weeks ago my time, actually), you’ll finally get back to praying until you fall asleep and God will speak to you in the most remarkable way. It makes my heart soar just thinking about it. And now I’m back, you’re back (because trusting God to guide you is a lot like being eight years old again – I am His child, after all!), and I’m truly, truly happy. I am blessed and guided and humbled.

One more very, very important thing: Turn all your worries over to God. He can handle them much better than you can, believe me, and it’ll save us both a lot of heartburn if you stop worrying in favor of letting God take over. 

I miss you, but I’m remembering how to be like you more and more each day.



P.S. Please don’t tell Ab that sweet peas are edible…

What I’m Working On: Simple Solutions

Brace Covers

As you know, my elbow pain has been causing me some serious strife here. I’m unsure what is going to happen next, but today I let go and went on an excursion to begin beautifying my very conspicuous, not-so-attractive braces.

I went to my very favorite place (aside from the bookstore, the library, and the coffee shop, of course): the fabric store! My mom taught me how to sew when I was very little, and I am incredibly grateful that she passed down her 4-H wisdom to me! (Quick confession: I dream of living in the country so I can send my future children to 4-H and we can cook and sew together! So idyllic, so calm, so homey…ok, back to suburbia we go!)

I picked the three fabrics pictured above: the left is a subtle zigzag pattern on a faded-denim color knit, the middle a happy pattern with coral, yellow, and brown, and the right a very stretchy turquoise, coral, and green polka dot. I’m planning to make two brace-covers with each fabric so I have one for each arm.

When I was wearing a short-sleeved shirt yesterday, I noticed that the space between the end of my sleeve and my brace was uncomfortably obvious, so these covers will have a ribbon to attach to my bra strap with snaps and will tuck right under the edge of any short-sleeved shirt for a comfortable, patterned solution!

I hope to have at least one set finished before I go to school, so I’ll post the finished product soon! I’m excited about this solution.

Ergo Workstation on a Budget

I’m currently working from my permanent residence before I go back to school, and I like to be around my family while I can. Growing up, I always did all my homework at the kitchen table, and my mom’s watercolor workstation was right across from my seat. It has always felt like an inspiring place, and when I get writer’s block or suffer from the dreaded curse of procrastination at school I frequently turn to my roommates and ask if they wouldn’t mind squishing our very own kitchen table in the common room. It’s where I do my best work!

But that also means that I’m sitting on kitchen chairs without a keyboard lift, ergo arms, or anything else I’m supposed to use when I work! So I’ve devised a couple quick fixes for a lack of ergonomic comfort until I return to the dreaded dorm desk:

This back support was $10 at Target, and it keeps me upright and without lower back pain for quite a while (or at least as long as I want before I get distracted!). I’ve clipped it right on to the back of the chair, and in that respect a kitchen chair is actually a great choice –  the back of the chair was narrow enough to strap the support on without stretching it but wide enough so the support doesn’t slide around. to get the best words on the page.get, and it keeps me upright and without lower back pain for quite a while (or at least as long as I want before I get distracted!). I’ve clipped it right on to the back of the chair, and in that respect a kitchen chair is actually a great choice –  the back of the chair was narrow enough to strap the support on without stretching it but wide enough so the support doesn’t slide around.

I’ve started to use a wide-grip pen for writing. It sounds so simple (I suppose that’s the point, though :)) but it makes a world of difference. Instead of spending my entire working time typing, I periodically switch to the magical yellow legal pad and do some drafting or revising there. I prop the pad of paper on the edge of the table and the edge of my laptop (so I can still reference my screen) and scribble away without any hand discomfort – none of the bones in my hands have collapsed when I use this pen. It’s that amazing (it should be for $7… yes, I splurged, but no, I don’t regret it for a moment).

And the magic yellow legal pad? Just give it a try next time you’re having trouble coming up with the right sentence order, syntax, or even starting a brainstorm session. There’s something about that yellow paper that makes the ideas flow faster… I think I feel like my words are less precious when I write on yellow paper and therefore I’m more willing to scratch them out and begin again.

P.S. The reason I do a lot of writing is because A) I write these posts, inane though they might be! B) I received a grant to write a long paper to submit to a journal on 20th-century feminism, and C) I work for a website that posts book reviews and reader guides for children’s literature.