A New Chapter

Hello! 

It has been so long since I last posted here, and for that I’m sorry! I spent the remainder of the school year in a constant struggle with my symptoms and generally felt too discouraged to write about it. The last thing I want to do is spread a discouraging message in public. 

I started PT for my hips which helped for a while but I was set back when I dislocated (and subsequently sprained) my ankle in early May during a short, easy run around the Charles River. I was on forearm crutches for a while (which I would highly recommend over traditional under-arm crutches! What a radical difference!) but then I took a three-week trip to Turkey, Bulgaria, Croatia, and Serbia and I opted not to lug those around Eastern Europe. Unfortunately, that means that my ankle is still almost healed. I’ve plateaued in healing mostly because I’m so stubborn and eager to get back to a normal (ha!) activity level after nearly 4 months.

Pro-tip: No matter how inconvenient it is, always seek help to relocate those stubborn joints (like ankles and feet) instead of waiting until you’ve sprained the joint! That’s what I did: in late April, I dislocated my right ankle but I was in the middle of concerts and finals so I didn’t have time to have someone put it back in place. I braced it and walked on it for two weeks until I saw my mom who realigned it…but of course it didn’t stay in place because I had stretched the ligaments so much. After a few days of constant readjustments it finally stayed in place but the sprain remained. And that’s where we are now. Sigh. Thanks to my idiocy and stubbornness, I’ve had to keep the brace on (an elastic wrap, essentially; gentle compression goes a long way!) for almost four months solid. 

On to the positive: I’ve begun taking my general well-being much more seriously and have placed my wellness at the center of my awareness (at least until school starts…). 

I generally don’t have time to focus on my own wellbeing, but since I was fortunate enough to earn a grant for independent research this summer, I have had time to focus on getting healthier on my own body’s terms. I have started practicing gentle yoga to strengthen my muscles and improve my overall health (I am lucky enough to come to wellness with an open mind in regards to methods, and I firmly believe that Western medicine does not hold all the answers), and until my elbows began subluxing I was able to practice daily. Unfortunately, I have been derailed from that specific practice until I strengthen the muscles holding my elbows together with physical therapy (and even some specific yoga poses without the “flow” component that I love so much). 

I just returned from a week-long family vacation in Vermont where we swam every day and even biked 9 miles in the mountains one day, and the change in my body was remarkable. I love to swim, and I was reminded of how much I love to bike, so I have decided to train for a triathlon. This training will take place over a year or more, and I will go as slowly and gently as I possibly can. I work best with specific goals, so “overall wellness” wasn’t quite cutting it. 

I have started a new wordpress blog at www.mybodywillrun.wordpress.com where I will post about my training and EDS-related challenges, but it will also be a general fitness-focused blog to keep me motivated and hopefully inspire others. I was inspired by another EDSer-triathlete, and I believe that with the proper care, attention, and PT supervision, I will be able to participate successfully in a triathlon event. I’m excited to embark on this journey, and I hope that having specific training “goals” that are flexible enough to accomodate EDS setbacks (ahem…weather, hormones, cobblestones…yes, I mean you!!) will keep me focused throughout the school year. I have a very busy year coming up, and exercise goals will hopefully ensure that I keep my life balanced. 

This has been quite a long catch-up post and I do hope you’ll excuse the length and at least give my new endeavor a look. I appreciate all of your support more than you all know! 

Simply,

Rachel

My Pain Scale

I read a very interesting post on the EDNF message boards yesterday about individualizing the typical 0-10 pain scale, and it got me thinking about my own pain scale. I’ve mixed my quality-of-life assessments with my symptoms of pain because to me they are inextricable.

0- I’m not sure I can even remember what a zero felt like…

1- An excellent day! No soreness, tenderness, cracking, snapping, or popping! I can function without thinking about my joints.

2- Some soreness, but it doesn’t interfere with my daily life. I don’t have to make any adjustments to my motion (eg. no need to avoid bending down or pulling a door with force), but I am dimly aware of the risk of overextension.

3- Achiness that requires me to change my daily habits and modulate my movements to accomodate. Specific joints in pain will require the support of braces.

4- Persistent, unavoidable pain that I usually have to breathe through. Can also be an acute subluxation with non-persistent pain if I am able to quickly realign.

5- Sharper pain that is usually accompanied by shortness of breath and tight muscles. I have to focus on locating the pain and attempting to realign whatever moved out of place. Usually comes with a sudden turned ankle, an unexpectedly heavy door, or when I straighten my elbow without realizing that it was misaligned (which happens fairly frequently, actually…proprioception is apparently not my strong point, even after 16 years of ballet!).

6- Full-body, dull pain that renders me immobile until the ibuprofen kicks in. Akin to my worst menstrual cramps. If ibuprofen doesn’t work, this type of pain gets kicked up to Level 7 status.

7- Sneezing! Sneezing is my number one high-risk activity. My body feels like it has been taken apart and put back together after a large sneeze. For a visual, picture a cartoon-style explosion combined with a cartoon-style electric shock: the body flies up into the air as we see its skeleton in contrast with a jagged black explosion-bubble, and the bones separate momentarily before the cartoon falls to the ground (sound effects accompany this, of course!). I am in so much pain after a sneeze that I usually have to find somewhere to lie flat.

8- Persistent and acute pain that affects a large area of my body, such as a hip subluxation that results in a pinched piriformis.

9- A hip, rib, SI joint, or shoulder dislocation that leaves me crying and unable to speak.

10- I haven’t experienced Level 10 pain on my scale yet, thank goodness!

Loosey Goosey

The weather here is miserable (drizzly and grey), and unfortunately this week begins my monthly hormonal upswing. For about two weeks every month, my joints feel like they are in a constant state of near-subluxation, even if they aren’t my typical problem joints.

For example, this morning my ankle popped right out as I rolled out of bed, and that set my morning routine back by about fifteen minutes as I taped and re-located the joint. The dislocation was fast enough that the pain was minimal compared to my other frequently-dislocated joints, though! In the process, however, I managed to misalign my left shoulder, which I discovered as soon as I got into the pool to attempt a 1km workout. I switched to using a kickboard, but that aggravated my ankle, so I managed only 1/2km, which was good enough for today!

I’m going home this weekend so my mom (a very knowledgeable and understanding PT asst.) can tape my shoulders. I am so lucky that I have someone as compassionate and intelligent on my side during what is sure to be a long struggle to mobilize a care team here at school. Hopefully the taping will work and will stay on for the rest of this loose time span.

Unfortunately, my fatigue got the better of me this morning after I got home from my swim and, with two hours until my first class, I lay down to rest. However, that rest turned into a three-hour nap, and I missed both of my morning classes. My fatigue is also impacted with hormonal fluctuations, so I emailed my professors and explained a bit of the situation, and they responded sympathetically. I have found that being completely upfront with professors is the best way to go–they’re human too!

My wrists feel like they are disengaged from my arms…Good thing this weekend is a long one! President’s Day couldn’t come at a better time.

Tuesdays.

Ah, Tuesdays: you routinely contain some of the best and worst moments of my week.

The Best:

• getting to recite one of Chaucer’s Dream Poems (“The Parliament of Fowles”) at the Faculty Club for the annual Medieval Studies Valentine’s Day recitation
• fruit bar at dinner! Tonight was kiwi, melon, and two different types of oranges. After eating KIND bars and Larabars for meals all day, the fresh fruit was such a treat! 

The Worst:

• A three-hour seminar-style class. Today was especially painful because my SI joint would not stay in place, and neither would my left pinkie. In a class of three other people I couldn’t work up the courage to adjust my SI joint, so I spent most of the class finding comfortable positions for my back (to no avail, I’m afraid) while simultaneously fiddling with my left hand to see if I could re-locate the third and first joints of my pinkie. The pinkie actually forced me to stifle a few cries of pain at some points when I attempted to continue taking notes (I’m a leftie), but I managed to find a good balance between one-handed typing and scribbling in the margins of the text we were analyzing. 
• a paper due tomorrow! I haven’t been able to get as much work done on this as I would like because my SI issues have prevented me from sitting at my computer for long stretches at a time, but tonight I think I’ll scope out a comfy place in a cafe and write as much as I can there!

The combination of a delivery of gluten-free cookies and Ein Heldenleben playing in the background of my evening has certainly cheered up this painful day!

EDS Documentary

I can’t wait until this comes out. At that point I might even “come out” as an EDS sufferer to my community at large!

Going Gluten Free

Last night was pretty rough. After I posted here, I curled up in bed and tried to find a comfortable position for about three hours (very little reading was accomplished…). I am all out of ibuprofen, so I tried to breathe through the pain that was my body telling me I had done too much. I woke up this morning with my hip subluxed, but luckily it did not pinch my piriformis so it was easy enough to reduce!

Last night was the first in 7 nights that I’ve had to do this because…

Today marks day 7 of being on a gluten-free diet! I have had great success so far. Here’s what I’ve been eating on a regular basis (note: I’m a vegetarian!):

• as many plain fruits and vegetables I can find! Sometimes I have to ask the dining hall staff to cook a quick cup of frozen peas, but usually there are many options including a salad bar and a Tuesday night fruit bar.
• gluten-free waffles (Van’s are my favorite) with peanut butter and apple or banana slices
• gluten-free bread (Udi’s tastes just like regular bread) with cream cheese and no-sugar-added jelly
• KIND bars (so far I’m partial to the strawberry and peanut butter one; these are really expensive so I’m trying to have one on hand in case I’m stranded somewhere full of gluten instead of eating them as snack bars)
• Almond Nut-Thins or Pecan Nut-Thins. I liked these crackers before going GF- they’re super tasty and go well with many kinds of cheese. I’ve also been able to find them at CVS, which may be just because I live in a small city.
• chocolate! Since I don’t have celiac disease (at least, I haven’t been tested for it), I’ve been able to stick with the generic chocolate that may contain traces of wheat.
• tea!! I love tea, and I’ve been having some trouble processing the amount of caffeine contained in a cup of coffee, so I’ve been having about three cups of tea a day this past week.

My diet has mostly consisted of fruits and veggies, which is great. I feel lighter, my GI issues have all but disappeared, and to top it off: I have lost five pounds. I didn’t even know this was possible! I’m taking it as a sign that my body was not happy with my gluten intake and going with the flow, because I could really stand to lose about another 15-20 pounds to take the stress off of my joints.

The only thing I miss so far is a good cup of coffee (I’m looking into whether gluten helps absorb some caffeine that is now affecting me so much), but luckily Starbucks makes an excellent decaf latte. 🙂

Live well,

Rachel

Long Day

Today I wound up using too many “spoons“.

I worked overnight, babysitting from 1:30pm yesterday to 12pm this afternoon, and I rushed right from work to help put together an annual Tea I had co-organizd for several weeks. The problem about an event on campus is that all the supplies must be moved…from somewhere. This requires lifting and bending, and after a night on a pullout sofa there was no way I was going to be able to do any of it.

S0 I warned people, using polite but concise language, that I was unable to help with the physical aspect of the event. This was totally new for me. I delegated everything, down to cutting the cheese (which is always an especially difficult task for me, actually)! Everyone was extremely supportive, and the event went really smoothly. I gave my speech and ran around to help guests as usual, but I avoided (almost) all heavy lifting (there was that one piano bench…) and physical activity other than walking.

And yet here I am, after a two-hour rest, with my left elbow dislocated and my SI joint screaming, in addition to my expected wrist pain. I haven’t figured out how to reduce my elbow and I’m in my pajamas, so a trip to Urgent Care will have to wait until tomorrow.

I’m prioritizing, though! Instead of trying to type a paper with my left arm in a sling, I am going to prop up some readings on pillows and read in bed until I fall asleep. Schoolwork continues despite obstacles like this! 🙂

Live well,

Rachel

To Begin at the Beginning

This is technically not the beginning of my journey with EDS, but this is my first time writing about it.

 

So this is where we begin.

 

I am a 20-year old student at Harvard College studying History and Literature. As I type, I’m sitting at my favorite Starbucks trying to avoid writing a paper due Wednesday. I love to write, read, take pictures, and learn.

We realized that there might be something wrong with my joints when I was young, about 9 or 10, and we saw my pediatrician for recurring wrist pain. Her response was flippant but helpful in many ways: “Well, your joints are so lax that you may very well have Ehlers-Danlos Syndrome, but the only thing we can do is fuse your wrist bones.” I did not have my wrist bones fused, but I continued to experience pain that quickly began to show up in other major joints like my hips and shoulders.

Flash forward about eight years, and I stumbled upon Ehlers-Danlos Syndrome in a web search for joint disorders after recurring hip, shoulder, and SI dislocations. The name rung a bell, and my thorough research began.

I score an 8/9 on the Beighton scale (see a diagram here), and my recurring pain in three or more major joints has given me an “almost-positive” diagnosis for EDS. My university health system doesn’t do genetic testing, so for the next two years I will have to rely on that diagnosis.

I am as active as my body permits, which is getting more and more difficult. Back spasms have left me in bed through classes, and overuse of my joints has caused days of limping around, running on empty. As far as things go, however, I am able to do a lot with my body.

This blog will be my attempt at chronicling my journey as a young adult with EDS as I navigate the ins and outs of living with chronic pain, a gluten-free diet, and social awareness. I hope you’ll join me!