{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 7} Redesign a Doctor’s Office (sort of)

I’m trying not to feel guilty for being 5 days behind on National Health Blog Post Month, but things happen! In my case, a never-ending flare has me still catching up on last week’s prompts. 

 

I have to admit that I don’t pay much attention to the waiting room in my doctor’s office, because whenever I’m there I’m usually desperately trying to focus on the reading I need to catch up on, or emailing my professors to let them know that a note from the health services desk will be attached to the homework that I’ll have to leave in their mailbox, or trying not to succumb to the ever-increasing fatigue that attacks at the worst of times.

The waiting room is on the third floor of the tallest building in Harvard Square; its cement façade is out of place among the brick and cobblestone of the tourist-trafficked Square, but it provides one of the best views of our small part of Cambridge. The sunlight streaming in through the large bay windows does nothing to suppress my fatigue, and I often have to remove several layers as I sit in front of those windows, soaking up the sun.

Needless to say, the last thing I’m thinking about in the waiting room is how to redesign it to make it suit my needs better, but I suppose I have some ideas. First of all, I would love to have a clock in this waiting room. Right where a clock should go, there is a sign saying, “If you have waited more than ten minutes past your scheduled appointment time, please see the front desk”, as if to taunt patients with the fact that they will never know how long they’ve waited unless they repeatedly check their own watches or phones. Secondly, those chairs should be reclinable, or at the very least comfortableThere is just no way to get comfortable when you’re crowded in with sick patients who are sweating from the hot sun just as much as you are.

The most important addition I would like to see in the waiting room: tablets complete with software that would provide a likely list of questions your doctor will ask at your visit based upon your presenting symptoms. Does software like this exist? If so, it would go a long way in making each visit as productive as possible. If I didn’t have to stop and think up answers to questions I wasn’t prepared for, I would be better able to articulate myself and make sure I wasn’t missing a key part of my history or symptoms. With a chronic illness, it can be really difficult to remember which symptom goes with which diagnosis, or even to know which symptoms are relevant and worth mentioning. The more doctor’s visits I have, the better I can predict the questions that will be asked, but sometimes brain fog sets in and I need to rely on an external memory device for prompting. Usually, that device takes the form of a scrap paper I scribbled on in the waiting room as I tried to remember what to bring up, or even why I was there in the first place.

If a waiting room had docking stations for tablets that would sync to the doctor’s own tablet or computer, patients could prepare answers to commonly-asked questions (or even not-so-commonly asked questions, so nothing would be left out) as they waited, and then would be able to verbally add more depth to their answers with the doctor’s prompting during the visit. The software could even help the doctor identify rare or forgotten causes of a range of symptoms without stigmatizing the doctor’s lack of knowledge–any red flags would be subtle, and it would still be up to the doctor to decide to pursue more tests or information on anything suggested by the software.

I’m a huge fan of informing doctors of rare or under-diagnosed conditions because conditions like mine often remain undiagnosed–and untreated–until it’s too late to make any preventative treatment decisions. I know we’re probably a long way from using any type of software like this in making health care decisions, but at the very least a check list of commonly-asked questions available in the waiting room could help focus the patient’s mind and provide her with extra time to present a litany of symptoms.

 

{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).

 

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.