Coping Mechanisms

During Jessi Connolly’s InfluenceNet class Tuesday night on “surviving + thriving in transition”, she mentioned the difference between Coping Mechanisms and Escape Routes: one God-given, the other dangerous. That entire class really got me thinking, but this section stood out the most and has been on my mind ever since, so I started to identify some of my coping mechanisms during this season of transition.

What is this season of transition? There are a lot of things that cause this part of the year to be so hectic, but this year feels more like I’m turning over a new leaf than just going with the flow of the school year, the weather, the homework, and I think the Lord has put it on my heart to be aware of that. For instance, I went into Tuesday’s online class thinking I would take notes and shore up Jessi’s wisdom for next year, when I’ll be moving on to graduate school, but I left with a whole lot of clarity about just how entrenched in transition I am (thank you, God!). Here are the transitions I recognized:

  • applying to graduate school starts this summer- you’ll find me in a library studying for the GRE, learning medieval Latin and brushing up on my Biblical Greek and Hebrew, and working full-time as a nanny. Yikes!
  • transition of leadership in the non-profit organization I am involved with–and of which I’m now president!
  • moving from one dorm to the next, all without stopping home for more than a weekend to visit and hug my family (and cats!). I love hugs from my family. Oh boy do I miss those.
  • a shift in thinking about my future. I visited a very special place on Monday and Tuesday that has me thinking in a different way about where I feel called to in life.

And through all this, I started to pinpoint my coping mechanisms. In thinking about this, I wanted to make sure that everything that I am doing or using during this season is life-giving and productive to my own self-care. It’s very easy for me to get overwhelmed by stress and eat all the things instead of taking a beat, thinking about what would contribute to my overall wellness, and doing that. I turn to food a lot as an escape route, and I’m praying that the Lord would help me look at my choices more carefully to figure out where I’m escaping and how to use the tools He’s given me to cope instead.

A very lovely blogger Pint-Sized Mama asked the class what their coping mechanisms were, and I found everyone’s responses very helpful in identifying my own, so I wanted to share mine here!

My Coping Mechanisms

saucony

running

I have an on-again, off-again relationship with running, but today I did a crazy thing and I came home from work, about ready to burst into tears, and instead of ripping into that bag of popcorn before dinner, I put on my running shoes and went for a jog. It was nothing to call home about, but the fact is that I chose running over a few other way less healthy and less satisfying options and felt much better for it. I’m so thankful that my body allows me to do this, even if it’s only for 30 minutes! I’ll take it.

ytcu_suncare_bundle

yes to… skin care line

Y’all, I am in no way associated with this genius company, I promise. But there is nothing like sitting down at my desk after a long day and hitting my face with one of their cleansing wipes. It is incredible. I feel instantly refreshed, and since I’m too lazy to reapply my makeup, it means I go get dinner, my evening coffee, and even make a library run without any makeup on, which is never a bad thing! I’m learning how to be less self-critical without makeup. It’s a journey, but I’m taking steps. Anyhow, I can’t even tell you how wonderful my skin feels when I’ve taken my makeup off–without even leaving my desk! It’s become a major comfort factor for me and helps me focus.

taking walks + bookstore stops

This is a spot in the garden of one of my favorite campus buildings. It’s so glorious in the spring, and I like to walk there to think. It doesn’t hurt that one block over is also my favorite bookstore, where I love to browse for inspiration. One of my favorite sections is the cooking section–I can’t wait until I have a kitchen next year!

doodling

Fun fact: I love drawing…on my tablet! I got this for my birthday after eyeing my mom’s for years (she’s a watercolorist), and I love to doodle on it when I’m feeling stressed. I get so self-conscious about my drawing skills on paper, but somehow the computer makes me feel free to do whatever I want. If you do like to doodle on paper, I would highly recommend Zentangles–their method completely freed my controlling left-brain and let my creative right-brain take over on some rainy days this summer.

P.S. Speaking of doodling, I’m in the midst of a blog overhaul! I registered a new domain and am getting to work on the design little by little, so I probably won’t roll it out for a few weeks, but I wanted to tell you now because I’m so excited!! Stay tuned! 🙂

What are your coping mechanisms? How do you make sure they don’t turn into escape routes? 

Advertisements

My Heart’s Spring Cleaning

This morning I looked outside my window at the rowers on the Charles River and sighed contently: spring is finally here. The birds know it, the trees know it, and my heart knows it. It’s time for a spring cleaning of my perspective–and how I write this blog.

Since I primarily tweet about being a student with chronic illness, I found myself with less and less to post here this semester. Why? For a while, my EDS went into remission. It. was. glorious. It was the best I have felt since my freshman year of high school, and I tried to relish every second. That meant spending a lot more time with friends, singing till the sun came up, and really, truly enjoying academics. This left me conflicted, and silent: if I claimed to discuss being a student with a chronic illness when I didn’t feel like I had a chronic illness, where did that leave me?

I am so often tempted to shed layers of myself in order to squish into a certain mold; in this case, that mold is the chronic illness blogosphere, and the layers I shed to avoid hurting anyone’s feelings left me a shadow of the life-loving, vibrant person I am in real life, and left my blog silent for months.

I love reading faith blogs, but am not a “faith blogger”, I love reading chronic illness blogs but am less and less a “chronic illness blogger” (though my EDS has returned with a vengeance). I go through phases, but truthfully, writing about what is on my heart helps me stay sane in the crazy competitive environment I live in, and helps me stay grounded to what I truly believe and care about.

So I’m back here! But with a new heart-perpective. I don’t want to shed any more layers of myself, and instead will begin adding them back in to my online presence, and I’m excited! I can’t wait to share more authentically with you. I miss this space, and I miss hearing from you.

So what will I be talking more about?

  • faith, and my struggles with it. I hope that fellowship with others in the online faith-blogging community will deepen my understanding of God, and I hope that I can create a safe space to discuss fears, doubts, and, ultimately, hope in God. 
  • fitness. One of the things doctors always say to me when I first see them is, “Just exercise! It’ll solve all of your problems!” Well, no. I’ve had to learn how to exercise safely, without causing permanent or even temporary damage to my joints, and I’d like to share my strategies here. I signed up for a 5k on June 22nd, 2013, to keep me motivated, but there’s a cushion built in for injuries in my training plan. Everything I write about will be what my physical therapist and I have worked on together, so you EDS folks don’t have to worry about me!! That said, just because I can do it doesn’t mean you shouldn’t talk to your doctor–everyone has varying strengths and weaknesses with EDS (and in general!). I’ve realized that exercise helps me feel whole, and I don’t want to hide that anymore!
  • food (maybe). I’ve been playing around with how to eat right for my body in a dorm setting, and it has been quite the experiment! This summer I’ll be living on campus without a kitchen or dining hall services, so this might have to wait until the fall, when I have a kitchen in my dorm (!!).

Long story short: expect some changes up in here. Thanks for sticking with me, and I hope we can connect more this way!

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!

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.

Endurance

As a girl who sometimes has trouble getting out of bed in the morning, the word “endurance” doesn’t come to mind very often. It rings of long-distance medal events, a long day at the office, a redundant but necessary task that takes so long you use everything inside yourself to push through it, as if you’re winding a spring throughout the day to *THWOP* let everything fly loose in those last fifteen milliseconds, the last tick of the clock, the ding of the elevator.

I never think of having much endurance, but I suppose I must. Having EDS means that I really do push through each day minute by minute, as if I’m living a marathon.

“Therefore do not throw away your confidence which has great reward. For you have need of endurance, so that when you have done the will of God you may receive what is promised.”

-Hebrews 10:35-36 (ESV)

I stumbled upon this verse during my nightly “Ending the Day Right” devotional from YouVersion (Internet Bibles are so my thing–you can pick from any translation you can think of and you don’t even have to risk dislocating a wrist or elbow!! Talk about a blessing.), and it really struck me.

The past few days I have been dealing with the implications of my elbows subluxing (when a joint subluxes, it shifts or slides around in its socket or capsule but does not completely dislocate; subluxation in my joints frequently pinches important nerves, but mostly it’s just painful and frustrating). Neither of my elbows has ever subluxed, but this past week both of them starting slipping, sliding, grinding, and cracking (was that too much? sorry for the squeamish!) and I’ve had to wear some kind of compression every day. The compression braces aren’t what worry me – I fear that this could start happening all over my body for no apparent reason.

Here’s the problem: I’ve lost a lot of mobility in my arms because the muscles, tendons, and ligaments in my elbows have swollen and stiffened with each subsequent injury, and since they have been happening so frequently my arms haven’t had a chance to heal. This means that this loss of mobility could be permanent. What if my knees start subluxing? My shoulders (which already slip enough, thankyouverymuch!)? Thoughts like these have been swirling around in my brain with nowhere to go – there’s no off-switch for a chronic disorder.

Wait a second, God seemed to say to me. Just pray.

And so I found the #SheReadsTruth community and began to read Proverbs daily.

And I ached for more Scripture, more devotionals to fill my day, so I hopped on board three daily devotionals.

And I prayed and I prayed and I prayed.

And I found Hebrews 10:35 – 36.

And Hebrews 4:16: “Let us then with confidence draw near to the Throne of grace, that we may receive mercy and find grace to help in time of need.” 

And let me tell you: my confidence in the Lord flooded back. I had left that confidence by the wayside in my teen years when my family stopped going to church; I felt betrayed by the God I had never really gotten to know, despite my prayers, Youth Group meetings, Sunday School, and choir practice. I learned that my mom’s faith was pasted on for show and my dad’s was much too limiting for my large imagination and love for all people everywhere, and I gave up on religion. The way I came back is a story for another day, but suffice it to say that God showed me exactly what I needed at exactly the right time. And totally blew my mind.

Endurance. I need it, all right! I need physical, emotional, mental, and spiritual endurance in order to do God’s work. Because really, this “living” thing? This “marathon of life” that I wake up to each morning? That’s God’s work.

And grace? Well, He’s got me covered. And you, too. Boy, have I been humbled to the magnificence and awesomeness of God.

So this is an exercise in endurance as I push forward each day, trying to do the best I can to walk in the footsteps of Christ, and praising God for the mobility He has granted me this far along my journey. 

Every trial has its first steps, right? I count two of them:

  1. When God revealed Himself to me again at the kitchen counter in the wee hours of the morning this Sunday, I smacked my head in disbelief and took my first step on my right path knowingly.
  2. I went for a bike ride with my dad this evening for the first time in over ten years. Nothing went out of place, my elbows didn’t complain too loudly, and my bike sailed through the breeze as I followed my dad around our town, connecting with him on a very real level and taking my first step on my cycling training.

Everyone has to start somewhere.

Let’s begin.

Love and light,

Rachel

Baseline

Since I’m a few weeks out from beginning any sort of formal training plan, I decided that I should explore my baseline fitness/pain level so that I have something to look back on and reference. As I’ve said, my more fluid goal is to improve my overall wellness, which is a vacuous concept involving my physical and mental health (emotional and intellectual). I’m further breaking that down into a few parts:

  • pain tolerance: How does my pain affect my mood and vice versa? Can I try to pinpoint various stressers in my life that cause pain? How does my outlook on life and my relationship with the people in it change when I’m in pain? What strategies can I employ to minimize the mind-bending, mood-snapping effects of pain? 
  • physical fitness: What can I do to minimize the amount of time I spend in pain? What physical activities cause pain and why? Is there anything I can do to alter those activities to make sure I don’t finish in pain? (N.B. The tough part about EDS is that often the pain starts after a physical activity–I could be walking pleasantly on a softly-graded woodland path for an hour or so and spend the evening and the better part of the next morning with my pelvis in a vice grip and my hips screaming, so this question will involve some serious retrospection and careful examination!)
  • event-specific readiness: How can I train for a triathlon in a beneficial method? What training schedule allows me to gain endurance and readiness while letting me listen respectfully to my body (and not allowing me to wimp out)? 

Notice that although I am medically considered overweight by about 30-40 pounds, none of my goals involve watching my weight. I’ve done this on purpose because I know that if I start stepping on the scale on a regular basis, I will lose track of my ultimate goal of full-body wellness. If I can achieve better mind-body awareness, I think that weight loss will happen naturally because I will automatically become more careful about what I put into my body for fuel and I will be moving more! 🙂 I’m kind of a nerd when it comes to health, so I’ll probably do my fair share of nutrition research along the way.

In addition, I plan on seeing a nutritionist when I get back to school! I discovered that I am gluten-intolerant (it goes along with the EDS for many people) and whey-intolerant, and I have a sneaking suspicion that I’m mildly lactose-intolerant, so I’m looking forward to talking through my dietary restrictions with a professional to make sure that I’m eating a balanced diet and providing my body with the fuel it needs to be as pain-free as possible. 

So here’s my baseline:

  • subluxations in my SI joints and pelvis on a daily basis
  • subluxations in my shoulders, knees, and elbows on a 2-3x-weekly basis
  • right ankle still in recovery from dislocation and subsequent sprain 4 months ago (still in elastic support)
  • left foot: bones collapse on a biweekly basis
  • left elbow currently subluxed/mildly sprained
  • 3-4x weekly full-body ache, but more often if low pressure system moves in or if hormones are going wild!
  • eating a gluten-free, mostly plant-based diet with more sweets than I like (my eating habits are out of whack: I eat when I’m in pain, and the subsequent pounds the sugar packs on cause more pain–what a vicious cycle!)

I think that’s about it for today. I managed to get my bike out of a very-packed shed this morning without incident, so I’m excited!!

Let’s Start Here

Dear world,

I have decided to enter myself in a triathlon as a 21st-birthday present. I turn 21 in September, so this gives me about a month to stew over the implications of this present. I am not particularly athletic, I am 30-40 pounds overweight, and I have Joint Hypermobility Syndrome, also known as Ehlers Danlos Syndrome or Hypermobility (H)EDS.

So why now? Why set such a lofty goal one month before my 21st birthday?

First of all, I plan on scheduling this triathlon about a year in the future. We’re talking a full year’s worth of training here. I’m not jumping in with my clothes on.

Second, I have been inspired by fellow EDSer Laura and her “Fat Girl’s Ironman Journey” and motivated by an emotional breakdown I had last night and unloaded on my poor mother.

EDS is hard to live with. I suffer from chronic full-body pain and acute subluxations and dislocations of any nameable joint in my body, which makes exercise quite a task. In fact, sometimes getting out of bed in the morning is more than my joints can handle! However, I am a junior in college with an incredibly full schedule of school, work, and extracurriculars and I need my body to keep up with me for as long as it can, which is why I have decided to set a goal for it.

My body will run (…and swim and bike)! I know it will if I am patient, loving, and gentle with it. I am primarily embarking on a path to mind-body wellness with an eventual end goal of participating in a triathlon.

I have chosen a sprint triathlon as my eventual goal because it contains a manageable amount of each sport: on a good day (and certainly not back to back), I can currently swim about 1/2 mile, run about 1 mile, and bike about 5 miles without experiencing discomfort or body aches the next day. I love to swim and bike, and I’m learning to love to run.

Over the next year (or so), I plan to train myself to swim, bike, and run in alignment at comfortable paces. To do this, I will be using (and taking notes from) the methods of Chi Running and Total Immersion swimming, as recommended by my physical therapist and suggested by several fellow EDSers.

In addition, since I predict that increased exercise will equal increased pain, at least in the beginning, I will be taking notes from the book Full Catastrophe Living as a way to help manage my pain and live more mindfully. I love yoga and the idea of meditation (though I am just so darn antsy that I’ve never gotten into the groove!) and I am totally approaching this whole journey with an open mind spiritually, emotionally, and physically.

Something has got to give. And when it does, I’ll be running.

Hopefully,

Rachel