Emily has become a prisoner in her own life.
Each day when she awakes, she spends a moment lying in her bed, waiting to see how bad the pain is. She waits to see if her legs will support her when she stands.
She sits up, and waits. Will the dizziness overwhelm her? Will she become nauseated?
She stands, and waits. Can she walk without help, or does she need to grab a cane to make it the few steps to her morning medication?
She sits down and opens her pill minder — all five pills are there. She counts them to make sure. She washes them down with a swig of water — room temperature, because too hot or too cold hurts. These are the first of 17 pills she takes a day.
Emily goes to make her breakfast, and sits wrapped in a blanket until her arms and legs are warm enough. The blanket is black with orange flames — a joke from fellow sufferers of Reflex Sympathetic Dystrophy, all of whom know the bad days which feel like their blood is on fire as it streams through their bodies.
After breakfast, she starts the lengthy process of determining if she can change out of her pajamas today. Let’s try pants first. Jeans? Nope, the fabric is too rough and feels like sandpaper rubbing her legs. Jogging pants? Nope, too loose and every touch against her skin feels like a slap. Tights? No again. The constant “hug” of the tights is more than she can handle. Finally, jeggings work — soft, denim-looking fabric that fits like leggings, but without being constricting.
Next, a shirt. First choice, too loose. Next, she can’t stop feeling the seams against her skin. This process continues until it seems like a dark version of Goldilocks and the Three Bears, without ever finding that porridge that is just right.
Pajama top it is.
Let’s head outside. Open the front door — what’s the weather like? Sunny and warm, good. Walk outside, the wind starts to blow, and Emily needs to head for cover. Everywhere the wind touches feels like pinpricks. Back inside, and start the process of finding a hoodie to wear that feels just right today.
We’re one hour into the day, and Emily is exhausted.
She is a prisoner in her life, and her jailer is RSD. It is a Complex Regional Pain Syndrome, a chronic condition characterized by severe burning pain. It can cause pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch — known as allodynia.
Emily is my 18-year-old daughter. She’s been battling RSD since 2010 — one-third of her life. The pain of this disease is so extreme, its young victims often succumb to suicide. The McGill Pain Scale puts this nerve pain higher than that of childbirth or a severed limb.
And there is no cure.
November is CRPS/ RSD Awareness Month. Monday, Nov. 7, is Color the World Orange Day — orange is the color used to signify CRPS/ RSD.
Emily and I have worked to raise awareness of this devastating condition. We’ve successfully lobbied the state of Pennsylvania to declare November “CRPS Awareness Month” and Nov. 7 as Color the World Orange Day. The City of Bradford issued a similar proclamation.
Smethport Borough Council has named Nov. 7 Color the World Orange Day.
The Era will be displaying orange lights to raise awareness for RSD/CRPS. Emery Towers will too. Have orange lights left over from Halloween? Keep them up. Turn them on this month to raise awareness for this horrible, life-altering pain.
On Monday, we’ll be wearing orange. We’re asking you to do the same.
—
Schellhammer is the Era’s Associate Editor. She can be reached at marcie@bradfordera.com
