Into the Ring

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

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

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

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

I am armored and ready for battle.

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

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

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

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

So I fasten my armor, and prepare for battle.

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

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

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

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

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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!!

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! 🙂