An Attempt at Normality

Imagine a beautiful summer day attending a friend’s backyard cookout. The company is great – cross talking about old times, politics and various family hijinks. Kiddos are running around the house chasing each other, playing ball and eventually breaking out into a full fledged water gun fight, at which point some of the guys join in. And food… so much food! Smell the grill, the ribs, the burgers… all mixing with the scent of a neighbor’s fresh cut lawn. The sun gets so warm a bead of sweat forms across your brow as you search for something to fan yourself with. Before you know it half of your body feels like you just walked into a sauna.

Then you realize trying to cool off is a futile attempt. As you look around you’re the only one sweating, besides the male “adults” now chasing children with buckets of water. Perhaps it’s because at least a quarter of your body feels frozen and is wrapped up as if you’re expecting snow at any moment. Or perhaps it’s just the normal sweating you’ll never fully get used to. You push that irritation out of your mind and try to concentrate on the conversation you were just having… only now you have no idea what you were saying, even though the others are still on the same subject. With a glazed over expression you consciously try really, really hard to focus, but it doesn’t help. A beautiful breeze arrives finally cooling your forehead yet causing other areas of your skin to sting and feel raw. Readjusting your blanket or knee sock or arm-length glove to cover the raw spot irritates the rest of your skin that had just settled down. Never letting on how much pain you’re truly in, you eventually find a way back into the laughter. You have to. If you don’t you’ll scream.

In time distractions stop working. In fact, they’re making things worse. You feel the happy voices and laughter tighten the muscles in your shoulders and neck as you withdraw. Sunshine blocked by a hat and sunglasses manages to make your eyes feel tired and dry. The extra pain meds you took to get through the day aren’t helping either. Your leg/arm/back screams to be out of your nice clothes and stretched out in bed. Even though your partner is having a blast they recognize the “look” and help you say your goodbyes.

Home at last you are thankful for the sun, the fresh air, the fabulous company and abundant food. But you’ll think about that more in a few days, when the flare-up you just caused passes. Yes, you knew there would be a price to pay for traveling that half hour in the car, sitting in a lawn chair for a couple of hours, and spending your energy on being social. Fighting off disappointment and depression you adjust back to your reality – this is just how things are, forever… or until they find a cure.


What can you do to help?
Asking questions, being informed and sharing information would be a huge contribution to the RSD/CRPS community. The more educated the general public is about this disease, the more attention it will get. For websites with tons of reader-friendly info try:

RSDSA: http://www.rsds.org

American RSD Hope: http://www.rsdhope.org

International RSD Organization: http://www.rsdinfo.com

International Research Foundation for RSD/CRPS: http://www.rsdfoundation.org

Of course, if you’d like to contribute financially there are several organizations collecting funds for research grants and education. Although I am not currently physically able to participate in either of these walk/run/roll events, I am participating virtually. PLEASE check out:

http://www.triumphoverpain.org

My RSDSA fundraiser page:

http://www.firstgiving.com/careylin

One of my fellow RSD’ers on FaceBook is hand making bracelets such as these. (I should have mine soon! Can’t wait!) All monies, less her expenses for materials, are being donated directly to RSD organizations. Let me know if you’d like to purchase one of these 14 dollar beauties and I’ll make the connection for you.

However, the absolute best thing you can do to help as an individual person is to support your friends and family members who have RSD. We can’t always attend social gatherings, but a courtesy invite makes us feel wanted. We may not always answer your phone call or email right away, because we’re probably napping. We may not ask for help with everyday routines or chores, but even the smallest gesture means the world to us. Please try to understand that we are stuck inside these hurting bodies and foggy minds with no definite way out. Although pain makes us want to crawl into a hole and hide, we do not want to lose touch with those who we know and love. It is your thoughts, words and actions that help us through the week, day or even hour. Really!

Intro to Me

In honor of RSD/CRPS Awareness Month I’ve jumped on the blogging bandwagon to chronicle another story of one afflicted with this ridiculous disorder. Feel free to ask questions at any time during the lecture. And please, try not to drool on the desk or snore in your neighbor's ear.


There was no significant moment causing the RSD/CRPS on the outside of my right foot to appear. I imagine I stubbed my toe or smacked my foot against something generic, a near daily occurrence, and then considered the resulting pain to be penance for my uncoordinated stupidity. Sometime during June of last year (2008) the pain in my foot became REALLY annoying. Besides swelling that looked like a bone was poking out and the immense pain when taking a step, the red/blue/purple colors were awful. Being the thickhead that I am, I waited nearly a month before seeing a doctor to address my broken/fractured foot. Little did I know that nothing was wrong with it.

Trips to my primary and orthopedic Drs, mixed with x-rays and MRIs, drugs and physical therapy, eventually left me with an initial diagnosis of bursitis between the bones of my foot. No one could really explain why I had this random, protective swelling, for a runner I am not. They seemed content to keep prescribing anti-inflammatories until it just went away. But I continued to push for answers and treatments. If the doctors didn’t have an answer I sure as heck was going to find one. In late October (2008) I was referred to a Pain Management Specialist. She reviewed my growing chart and examined both of my legs while mumbling few words to the accompanying nurse. When she was satisfied with her findings she sat/slumped on her stool. With a heavy sigh she looked up at me and said, “You have RSD.”

*** Please note that being diagnosed 4 months after the onset (or 3 after my first trip to the doctor) of this rare neurological pain disorder is really a blessing. RSD is believed to be a misfiring of the nervous system after some form of traumatic event, such as surgery or a fracture. As such, most people with RSD are misdiagnosed for months, or even years, after it begins.

Although now armed with a real diagnosis new meds did very little for my swollen, aching, burning, frozen foot AND ankle. My skin became too sensitive to wear a sock and I had only one sandal that almost fit. The first goal I set for myself, to wear a real shoe before it snowed, quickly came and went. In December 2008 I had my first surgical-type intervention. A Bier Block was performed, a localized drug cocktail infusion held in the lower limb via a strong pressure cuff for just over 30 min, and provided very little relief. After that there were 3 sympathetic nerve blocks performed by 2 different doctors which made very little difference. The most effective treatment, other than lots of pain meds and walking with a cane, has been a Ketamine infused compound (lotion) allowing me to finally wear socks and tolerate blankets in a futile attempt to warm my foot/leg. Hooray for small victories!

With each new aching, burning, sharp, sensitive movement of pain into a new area of my leg I’ve routinely denied that it’s RSD finding a new way to torture me. Just blame the overwhelming, pre-cramp sensation in my calf on being extra tired. Perhaps the sharp, caustic line up the side of my thigh was only because I did too much the day before. Like many misinformed Dr’s I needed my own physical proof, for sanity purposes, that it was Really Sucks Dystrophy spreading and not my own imagination. My often discolored and swollen knee and sensitive bum (feels as though I have a really bad sunburn… minus any heat… then scraped bare-bottomed across asphalt… inside the flesh) makes it hard for even someone as thickheaded as me to ignore reality. It’s simply part of the disease. In a mere 9 months the RSD has managed to encompass the entire front and outside planes of my right leg, from my toes to my hip, and the back of my thigh/bum. Within the past week I’ve also come to accept RSD has infiltrated my lower back.

On Monday, May 4th, my grandmother will drive to my home and bring me to have another procedure done. The doctors are hoping for a 50% improvement with a device called a Spinal Cord Stimulator (SCS). Think of it as a pacemaker for the nervous system. Monday’s trial implant will officially start my transformation into a cyborg with electrodes channeled into my spinal column connected to an external battery pack. I will also come home with my very own remote control. Whether or not I decide to proceed with a permanent SCS implant (battery will go in either my bum or tummy) will depend primarily on the outcome of this trial. Of course there’s more to the story than that, but I’ll save it for another lecture.

Although there is no cure for RSD/CRPS, new treatments are being developed to help us to LIVE with this awful disorder. The strength within the RSD support community is just as overwhelming as the disorder itself. Every day is a new battle and a new victory. I absolutely thank God for the unwavering love and support of my family and friends. Without them there's no doubt I would be a puddle of hurting goo hiding in a corner somewhere. I do continue to hurt and occasionally feel like goo, but hide a lot less.

For more information about RSD/CRPS, feel free to visit:
http://www.rsds.org
http://www.rsdhope.org
http://www.rsdfoundation.org