A Bride's Walk
Transdermal Therapeutics Patient
Pain sucks. Pain wears you down, it distracts your mind, but it's necessary: it's an alarm system yelling "WRONG, WRONG, WRONG" that tells us something has gone awry and protects us from further injury.
So what happens when that pain has no purpose, no reason?
At age 18, I suffered a slight foot sprain during a run. The pain started, and it never stopped. Seven years, 13 doctors, and countless X-rays and MRIs later, I received the bad news: I'd developed an intractable chronic pain condition called CRPS (Complex Regional Pain Syndrome), formerly known as RSD (Reflex Sympathetic Dystrophy). It was a name to give the reason I'd had to give up running, then biking, then walking long distances, and then standing in place for more than a few minutes at a time. It was the reason I had to wear flip-flops and sit on a chair in the shower, because standing in bare feet was no longer possible, and standing at all was no longer comfortable. I'd had podiatrists tell me to "try not to walk too much," or "just take Ibuprofen a few times a day." I'd had a doctor tell me to my face that HIS feet were fine when he walked, so why weren't mine? It boggles the mind.
I received my diagnosis with my parents in the room. At first we were pleased to have a name for it. Then we went home and started Googling.
CRPS isn't a death sentence. It isn't cancer, it isn't MS, and it isn't muscular dystrophy. Though in worst-case scenarios it can spread throughout the body and become severe enough to make even the touch of clothing on your skin impossible to bear, my particular case was and has remained localized. But my pain is my pain, and I grieved the things I'd lost.
I grieved the obvious things: No more running. No more tennis. No more long walks or cute shoes or standing barefoot in grass. I grieved the thing that still plagues me most: I'll never get to run around with my future kids. I'll have to pay steep consequences for chasing after them when they inevitably run toward danger. In my darkest moments, I fear I won't be able to catch them in time. (Don't worry, I've decided to keep them on leashes when they're small—I can handle a few dirty looks to keep them safe.)
The first year of my diagnosis, starting near the end of 2008, was also the year the pain and immobility were the worst: I could barely get through a shopping trip. I had to sit on the floor of the grocery store if even one person was in line ahead of me, because standing in place was impossible. Seemingly small things put me on crutches for weeks at a time: walking barefoot across a room to get a pair of shoes. Wearing new boots that turned out not to be supportive enough. Daring to play one game of ping-pong. I went through the stages of grief—mainly the anger, bargaining, and depression parts. The depression lasted the longest.
Eventually, I made an uneasy peace with it. I'd decided early on to avoid drugs unless it got to the point where it was a choice between drugs or a wheelchair. Until then, I figured, I'd hobble around, switch out my shoes every few months (only one kind of shoes works for me, and only when they're really fresh: New Balance 574s, you complete me!), and hope for the best.
Fast forward to 2013. I'd settled into a steady pace of about two bad flare-ups a year—bad meaning I ended up on crutches, generally for about three to five weeks, while my nerves slowly calmed down. Living a commuter's lifestyle in New York City helped keep my muscles from further atrophy, but all the walking increased my chances of flaring up, even when I stopped every couple blocks to rest. Despite all my prayers to the contrary, I ended up flaring up just before a good friend's wedding. I went on crutches immediately, I took Ibuprofen, I ate anti-inflammatory foods, and I achieved my goal: aside from one big stumble, I was able to walk down the aisle behind her as a bridesmaid, all the way to the stool that had been set up for me by the altar.
But the pain was far worse the next day. Usually, my flare-ups get steadily better, but maybe that brief jaunt down the aisle did me in. The pressure of my body's unreliability crashed in on me. Navigating an airport on crutches made it worse. I couldn't bear the throbbing, stupid, pointless, ridiculous pain— the pain I'd been dealing with for over a decade. The pain that stemmed from a jog I took one day in 2001. The pain I had to consider from the moment I got out of bed every morning till I lay down at night.
I spent the day crying behind dark sunglasses. Right before I got on the plane, I left my mom a voicemail. I was in pain, I told her. It wasn't getting better, it was getting worse. I didn't know how I could deal with it being this way for the rest of my life.
I knew there was nothing she could do, but I needed to dump on somebody—somebody who loves me enough to share my distress.
But I underestimated my mother. By the time I got off the plane and turned my phone back on, she'd done some research. A family member of ours also suffers from CRPS, in her hand. She'd started using a targeted pain management cream produced by Transdermal Therapeutics that, amazingly, had no side effects beyond dry skin, because the medicine wasn't taken orally.
I was heartbroken, I was desperate. I decided to break my "no medicine" rule and give it a try.
More than three years later, I haven't been on crutches since. Last year I danced at my wedding—in New Balance sneakers, but I danced. I walked down my own aisle and didn't need a stool waiting for me at the end of it. There are no miracles—I'll always have CRPS—but the balance of my life has changed. My pain has gone from being an erratic, unpredictable monster that dogged every single step I took to an irritating roommate I have to be mindful of. I can go days at a time barely thinking about it, because I no longer spend every walk across the room feeling it. I have to live my life within the borders CRPS has set (no running, stick with the New Balance, always find a seat on the train), but those borders have loosened, and the consequences for bending the rules aren't as great. On really good days I can walk for miles (not all at once, but managing it at all does feel to me like a miracle). I go to bed feeling sore, but I don't wake up unable to walk without crutches—the cream has made it so that my reset button is quicker. I don't need to recover with weeks of staying off my foot, I just need a night's sleep. I can go to parties and stand long enough to mingle, instead of heading straight for the nearest chair and hoping people won't think I'm a wallflower. I still wear flip-flops in the shower, but I no longer need the shower chair, because I can stand long enough to wash my hair.
I'll always live with my chronic pain condition. But I no longer live with constant fear. I no longer wonder not if but when I'll have to go back on crutches, just hoping it doesn't happen when the sidewalks are dangerously icy or the sun so blazing hot I'm covered with sweat halfway down the block.
It's no exaggeration to say that the compound cream I use changed my life. I cannot imagine going back to life without it.