{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 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).

 

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.

On My Bookshelf: Training Reads!

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

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

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

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

A (Potential) Training Plan

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

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

Here’s what I need before I begin:

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