{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

{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 6} A Time I Took the High Road

Still playing catch up with these NHBPM Posts…

As a chronically ill college student, I have had to make many adjustments to my school schedule and course load. I dropped my fourth class this semester, and am very much behind in my other three classes. Luckily I have very understanding professors and, of course, a registered disability, but the feeling of guilt refuses to dissolve each day I am late turning in an assignment or can’t make it to class.

I do feel guilty when I simply can’t push through the pain, knowing that there are people out there who don’t have the option to put off doing work or completing other obligations, but I know that if I “buck up” and ignore the pain in my hands, or my migraine, or my subluxed SI joint, I could be putting myself at risk for a more serious problem or permanent damage. And yet the guilt persists: I look like a healthy 21-year old, I should be able to finish this paper. If Barbie goes to class with the flu, then I should be able to get out of bed too!

These thoughts do nothing for my self-esteem, and they make acknowledging my illness quite difficult, but it’s becoming harder and harder to shake them.

Unfortunately, some people assume that I do not feel guilty at all for missing an entire week of class, or postponing a midterm until my flare subsides, and I have conversations like this:

Friend: How are things going? You’ve been looking a little fragile lately, for lack of a better word.

Me: Fragile pretty much sums it up! I feel like I’ll fall apart completely if I step on this cobblestone sidewalk wrong. Luckily my professors have been really wonderful recently.

Friend: That’s great! What do you tell them?

Me: The truth. I don’t mind explaining my illness, and they’re often more willing to provide accommodations if I explain the extent to which it affects my life and my studying.

Friend: Have you registered with the Disability Office?

Me: Yup, and they’ve given me a letter detailing the necessary accommodations.

Friend: So what kinds of things do they let you do?

Me: Well, when I can’t make it to class, they’ll email the class notes with a brief summary, and I get help taking notes. I can use a laptop for my final exams if necessary that day, so I don’t have to worry. Also, my professors have been great about extending deadlines and things like that.

Friend: Wow, so you can just turn things in late without any repercussions?

Me: That’s not exactly how it works…

Friend: Well, I mean, I’m glad you have great professors, but when I hurt my leg they weren’t so accommodating. I had to sit through entire lectures nearly in tears it was so bad, and they didn’t care.

Me: You should have stood up for yourself! My experience has been relatively positive with the Disability Office, but it does take a certain amount of self-advocacy. I’m really sorry though.

Friend: Well, as long as you’re getting extra help, that’s all that matters.

___

This conversation may seem innocuous upon first glance, but the tone of my friend’s voice was accusatory and defensive. A temporary injury can be jarring while in college, but it certainly doesn’t compare to the emotional and physical strain of a chronic illness, and although I am sorry that the DO didn’t address her pain adequately, there are reasons why they are taking my case much more seriously. Additionally, the idea that I’m getting “extra” help is not helpful for my unrepentant feelings of guilt, but my good friend reminded me that the University system is designed to support its students in any way possible. Pre-med students get special advisors, pre-law students get pre-law societies and teas, and there is no reason that I shouldn’t be receiving the kind of support I needed to put me on a level playing field with my peers.

Truly, that is what disability services offers: they even out the playing field so I can play, work, and learn with the same ease of my classmates. Other students get to choose their hardships: they pull all-nighters and get to complain about being miserable for the next two days, they pile on the course load, knowing that come midterm season they will be a bundle of nerves and raw energy. Disabled students don’t get to choose their hardships. We have hardships thrust upon us, and there is no reason that we shouldn’t get the leg up so that we have the opportunity to make our lives difficult–on our own terms.

{NHBPM Day 5} #ListOf3 Things I’m Thankful For

  1. Friends who care. Whether online or in real life, I have been blessed by incredibly caring friends who make sure I’m ok. While sometimes they don’t exactly say the most appropriate things, their caring is genuine and I appreciate that more than I can express in words.
  2. The abilities I have. I may be slowly becoming disabled in my body, but my mind is fully intact. I am thankful for the ability to talk, write, and eat on my own. I can still sing, and although I have to schedule hanging out with my friends strategically because it’s so draining, I have friends to hang out with.
  3. My family. Although my family can be frustrating, I love them to bits and wouldn’t trade them for anything.

{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.