Scratching the Surface

The past couple months have been a bit of a whirlwind: moving, birthday, leaving my job, and starting grad school. In the movies, the start of an adventure is much the same. The take-off is rocky, you are introduced to a whole new set of wacky, lovable characters, and then set forth on a life-altering journey! But the movies don’t typically take into account week eight of the journey, where things are harried, the main character hasn’t really adapted yet, and the destination is still eons away.

What I have entered, my wonderful readers, is the training montage.

This is where life gets particularly tricky. Sure, motivation is still somewhat high, the stakes are clear, and the goal is evident, but the path is covered in fog. Or, better yet for my personal metaphor, the lens is still covered in scratches. You see, fog dissipates.

For the past week, I’ve been experiencing a growing headache. Light was becoming a burden again. That glaring friction in my left eye was returning, searing into my pain threshold and blurring my vision. Some of my worst fears were creeping back into view as pain and light sensitivity seeped into my daily routine: Wake up. Lie face-first into my cold, dark pillow for at least half an hour. Take Tylenol. Rinse my eye, and lie there for another half hour praying away the thick pain of a migraine stabbing through my left eye. Get up for a few hours to try and get work done. Repeat.

This has been getting worse each day, and the brutal memory of years lived this way have quickly found their way into haunting my every step. Is it starting again? I think, Is the inflammation back? Is the pain back… for good?

There are so many of us who live this way. Walking to MARTA last week, my knee felt funny, and I worried the rest of the afternoon if the winter would be rough on my joints this year. What if the Remicade stops working? Even on days when life is relatively normal, those tiny worries sink their teeth into our thoughts, raising our adrenaline and heaping on the allostatic load. Cases of adrenal fatigue in patients with autoimmune disorders–really any chronic illness–must be high. For years people have cautioned me to relax, to stop worrying, to take a vacation. And yet, I find it exceedingly difficult to meditate, and taking a vacation from one’s own mind is relatively impossible.

This morning when I awoke, the pain was worse than ever. I had wasted most of yesterday curled up in bed, and the fear began to set in that everything would stay just out of my reach. First career choice? Gone. Chance at a “normal” life? Zero. And now this, grad school, my most yearned-for and inevitable-seeming life goal–would that be snatched away, too? Replaced by another round of years spent hiding from lights behind sunglasses, losing my hair to Prednisone, wasting two to four hours every day to that insatiable monster called Pain?

And then it occurred to me: Change your lens.

Severe scarring on my eyelid means that I have to wear a bandage contact lens to keep from getting corneal scratches. And much like the pain of a scratched cornea or intense inflammation, a small nick in a contact lens begins with the feeling of an eyelash lodged beneath one’s eyelid. Add the uneven surface of my own eye and the ease with which my eyes become inflamed, and that small annoyance can mimic great “discomfort.” Sure enough, as soon as I replaced my bandage lens with a new one, the pain began to evaporate.

Like changing a scratched lens, it can be helpful at times to shift one’s view from his own blurred perspective. Fear of pain, fear of loss, fear of failure, and fear of loneliness are all scratches that blur our vision from time to time. They can create lasting scars and cripple us for life, or we can upgrade our treatments and change out our lenses. Even a scratched cornea heals with time. And–as I saw recently on the streets of Atlanta–even a man entirely blind can find someone to help guide his way, tapping along the sidewalk with her own stick in sync with his and chattering away merrily.

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Day 2 – Health Activist Writers Month Challenge

Day 2 (April 2) – Introductions
 Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
 Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help
the newly diagnosed.

 

5 Things You Need to Understand About RA

 

1) It’s not just for old people.

After “coming out” about having RA, there have been a rather significant number of young adults in my life who have come out about their own autoimmune disorders. Just a few months ago in the grocery store I heard two women strike up a conversation over organic eggs. As it turned out, they’d both been recently diagnosed with an autoimmune disorder and were changing their diets to help counteract the effects. And when I go in for my Remicade infusions every two months, I see people of all ages in those Laz-E-Boys!

2) It is just for old people.

While autoimmune patients seem to be getting younger and younger (I was diagnosed at age 2), the effects of RA in particular can age you very quickly. I make jokes about being a young person in an old body because RA can make you feel like you’re 80! Rheumatoid arthritis hurts. Your joints can swell up and burn and feel like they’ll never work again. On your bad days, getting out of bed can seem an impossible task–no matter how badly you need to use the bathroom. Lifting a glass of water might even seem a feat for only Superman! This is when you realize how important it is to have young whippersnappers around who love you. 😉

3) It may wizen you, but it also wisens you.

I also joke sometimes that I am an old woman living in a young body. My feet might not have traversed this world for very long, but the experiences I’ve had are significant. I understand better than most how to treasure a walk in the park, how to love my body for exactly what it is, and how to relish in each moment of another day lived to its fullest. Bad days can be frustrating, but good days are so much sweeter in comparison. Because I’ve lived beyond “old age,” I appreciate being young more. And I respect my elders much more.

4) Doctors don’t always know best.

In today’s society, we seem to view doctors as demi-gods. Their opinions are like laws. I, too, used to see them that way. And then a young doctor’s attempt to aggressively treat my RA nearly cost me my life and my sight. When my eyesight began to fail, the wonderful corneal specialist I was seeing actually referred me to a better doctor! This happened not once, but twice. I now see the world’s foremost eye surgeon for patients recovering from Stevens-Johnson Syndrome. Yet even then, he couldn’t figure how to keep my RA from interfering with his surgeries. So when my second rheumatologist wasn’t offering the help I needed (and not seeming to care whether I came in at all), I did some research and found a new one. My current rheumatologist has brought me back to normal! The lesson being: if you aren’t happy or aren’t seeing results, get a 2nd opinion. Get a 3rd, 4th, or 5th! Find someone who has read that obscure article relating perfectly to your case so he, too, can bring you back to normal.

And never, EVER, be afraid to ask questions. While doctors might not be able to prescribe certain things, their knowledge of other patients’ experiences can also prove helpful. For example, when the Remicade didn’t seem to be working all the time, I asked my doctor about dietary changes that could help. Going gluten-free after hearing her stories has been one of the best decisions I’ve ever made.

5) You make your own “normal.”

During my flare-up of RA five years ago, I wondered how long it would be until I was “normal” again. I wanted any quick fix that would erase the pain, the weakness, and the frustration of it all. Instead, I got Stevens-Johnson Syndrome, which took me out of the “normal” world for a year, made life painful and difficult (and EXPENSIVE) for going on five years now, and permanently disfigured my eyes. Through it all, I held onto this subconscious hope that one day it would all be fixed. One day I would wake up, look in the mirror, and be “normal” again. I would have my skin back, my eyes back, my youth back. Then one day I realized that the old me was never going to return. My eyes will always look funny. I will always be on some kind of medication or special diet. I will always have to see doctors of one kind or another. And I will always have the immense strength and wisdom that have brought me to today.

So I will always be different. I will always look different. But I no longer wake up in pain. I can exercise without worrying that I will throw out my knees or cause another flare-up (at least, for now). So instead of being “fixed,” I woke up one morning and embraced this new me, this new “normal.” I highly recommend it for you, too. We might not feel normal, but this is who we are. And we can be this kind of normal together.

 

Check out these links to some past posts that really helped me through the worst days:

Let Them Eat Cake

Connections

Beauty is in the Eye of the Beholder

Finding Normal

Fearing Hope, Needing Hope