Table For Two

We sat at a table for two. The cucumber salad slid and crunched. Slid and crunched. Eating is interesting when you try not to choke on your thoughts. On what Monday could bring.

A lot goes through one's mind when facing a possible diagnosis - again. This time it might be ALS or a similar Motor Neuron Disease. It's like a view from a roller coaster. A repeated blur of imagery that turns your stomach on its side. Especially when it's black and white.

I am hoping Monday isn't black. That light flickers in and the doctor shakes his head in a way I'd prefer.

Right now I cannot sleep because my heart is riding a wind it cannot deflect. Life is surreal. As though angels have built a forcefield around my heart; Protecting me until we know what the neurologist has to say.

I said the words out loud. The what-ifs a husband should never hear. When his eyes swell with a future of emptied thoughts. Of one pillow on his bed.

I accidentally suck my soda through the paper wrapping left on top of the straw. An attempt at sterilizing our meal. A straining of carbonated words I cannot say. The table tips with un-leveled heels. The perfect setting for such a meal. We smile through the moment. Grateful for a pause in what we know. That Monday means too much.

We pay the check. He wheels me out. I look up. He looks down. His lips are mine. I love their shape. His chin. His jaw. I fall up into his eyes. He says he cannot lose me. My chest pulls to his heart. I answer that I do not want to be lost. Our hands fold into one another on the way to the car. We can live with this - the chair. But not an empty one. Not that.

We are in the eye of a storm we thought had passed. But no matter what the doctor may say, we will one day look back in awe - at when our life was left in balance at an un-leveled table for two.

My Doctor Explains CRPS (Previously Known As RSD)

Today Is SCS Surgery

Today is my official Spinal Cord Stimulator Implant surgery (SCS). A device will be implanted in the flank of my back. Cords, or "leads", will be attached to it and they will be carefully inserted up through the epidural space of my spine. Half way through the surgery, I will be woken up enough to tell the doctor if the electricity is covering my lower pain areas properly. Then they will knock me out again and finish up. The device will be operated by a remote I will control that sends commands for electrical impulses that will be conducted through the leads to block pain signals from my lower body from getting to my brain. I underwent a trial surgery that resulted in 60% reduction in lower body pain. It will take six months for the device to seal within the tissues of my back.

Don flew home from production in Memphis. The greatest gift of all.

What is CRPS or Complex Regional Pain Syndrome

A gradual loss of mobility can put a girl in denial. Mine is accompanied by the most blinding pain. And the decline continues to progress.

I was injured, but how did the loss of mobility and progressive paralysis get to this point?

Upon my neurology appointment this past Friday, the doctor asked me if I was diagnosed with the condition CRPS... and I knew it sounded familiar.

My new spine surgeon, as well as my pain management doctor, have diagnosed me with CRPS or Complex Regional Pain Syndrome. The symptoms are exactly what I have. So we will now be leading the treatment phase with this in mind. Unfortunately, there is no known cure. It began with the concussion, was compounded with the upper and lower spine surgeries done at the same time, etc. So, it seems there may be an answer here as to the "why". Now we need to figure out "how" I can live as normal a life as possible with this. "What", besides my next surgeries of Spinal Cord Stimulator and Rhizotomies, will improve my quality of life? Is it possible to ever walk again? Will I ever be free from debilitating pain? You know, little things like that. If my current in-home physical therapy does not help, I will have a fusion of levels C7-T2 as well as other possible levels not being helped by current surgeries or treatments. Also, how do we calm the tremors? How can we stop the progression of this condition as it continues to spread throughout my limbs?

Here is information I pulled from WebMD.

Complex regional pain syndrome (CRPS), also called Reflex Sympathetic Dystrophy Syndrome, is a chronic pain condition in which high levels of nerve impulses are sent to an affected site. Experts believe that CRPS occurs as a result of dysfunction in the central or peripheral nervous systems.

There is no cure for CRPS.

What Causes Complex Regional Pain Syndrome?

CRPS most likely does not have a single cause; rather, it results from multiple causes that produce similar symptoms. Some theories suggest that pain receptors in the affected part of the body become responsive to catecholamines, a group of nervous system messengers. In cases of injury-related CRPS, the syndrome may be caused by a triggering of the immune response which may lead to the inflammatory symptoms of redness, warmth, and swelling in the affected area. For this reason, it is believed that CRPS may  represent a disruption of the healing process.

What Are the Symptoms of Complex Regional Pain Syndrome?

The symptoms of CRPS vary in their severity and length. One symptom of CRPS is continuous, intense pain that gets worse rather than better over time. If CRPS occurs after an injury, it may seem out of proportion to the severity of the injury. Even in cases involving an injury only to a finger or toe, pain can spread to include the entire arm or leg. In some cases, pain can even travel to the opposite extremity. Other symptoms of CRPS include:

    • "Burning" pain
    • Swelling and stiffness in affected joints
    • Motor disability, with decreased ability to move the affected body part
    • Changes in nail and hair growth patterns: There may be rapid hair growth or no hair growth.
    • Skin changes: CRPS can involve changes in skin temperature -- skin on one extremity can feel warmer or cooler compared to the opposite extremity. Skin color may become blotchy, pale, purple or red. The texture of skin also can change, becoming shiny and thin. People with CRPS may have skin that sometimes is excessively sweaty.
CRPS may be heightened by emotional stress.

How Is Complex Regional Pain Syndrome Diagnosed?

There is no specific diagnostic test for CRPS, but some testing can rule out other conditions. Triple-phase bone scans can be used to identify changes in the bone and in blood circulation. Some health care providers may apply a stimulus (for example, heat, touch, cold) to determine whether there is pain in a specific area.

Making a firm diagnosis of CRPS may be difficult early in the course of the disorder when symptoms are few or mild. CRPS is diagnosed primarily through observation of the following symptoms:

    • The presence of an initial injury
    • A higher-than-expected amount of pain from an injury
    • A change in appearance of an affected area
    • No other cause of pain or altered appearance

How Is Complex Regional Pain Syndrome Treated?

Because there is no cure for CRPS, the goal of treatment is to relieve painful symptoms associated with the disorder. Therapies used include psychotherapy, physical therapy, and drug treatment, such as topical analgesics, narcotics, corticosteroids, antidepressants and antiseizure drugs.

Other treatments include:

    • Sympathetic nerve blocks: These blocks, which are done in a variety of ways, can provide significant pain relief for some people. One kind of block involves placing an anesthetic next to the spine to directly block the sympathetic nerves.
    • Surgical sympathectomy: This controversial technique destroys the nerves involved in CRPS. Some experts believe it has a favorable outcome, while others feel it makes CRPS worse. The technique should be considered only for people whose pain is dramatically but temporarily relieved by selective sympathetic blocks.
    • Intrathecal drug pumps: Pumps and implanted catheters are used to send pain-relieving medication into the spinal fluid.
    • Spinal cord stimulation: This technique, in which electrodes are placed next to the spinal cord, offers relief for many people with the condition.

This is all both enlightening and disheartening at the same time. We now have a name, but what can we do about it?

And the journey continues...

Out of Ego's Way

The gloved hand holds down my calve. I feel the tip of the needle enter its tenderness. My face buried in the pillow. Electromyogram (EMG). A synonym for water-boarding in the world of neurological testing.

EMG's can tell you whether nerve issues are coming from your spinal cord. But mine pointed in the direction of a neurological disease. The kind with letters as names.

Something happens when you hit a wall. You're chin digs in. Your eyes point to the sky. And you are forced to see something new. A sky with a sun shining down on lost hope.

Then I met a doctor, who I hope will be, the final stage in what has been an exhaustive journey of discovery.

My ex husband has wanted me to see him for months. But my ego got in the way. Perhaps it was the Taurus in me. Stubborn. But my two older children were persistent. They would come back from their dad's house and tell me that he asked about my progress. Another time he sent a message through them as to what he thought I should do next. But I still wasn't ready to bend. Even though he was in one of the most highly acclaimed practices in the nation. I couldn't get out of my own way.

Last Friday my phone rang. The voice was professional yet kind. She was calling from this new doctor's office to set up an appointment. That my ex had requested. With every test result possible sitting in a Brookstone bag in the corner, I gave in. They fit me in for 10am Monday morning.

Ego affects some when we're conflicted. As though it is the last string tied to our identity. I was resisting my ex husband's help because of our history. When history was perhaps the one thing that could finish this puzzle as to the loss of mobility in my leg and weakened limbs. My neck that collapses like an egg timer at twenty minutes. If you ever want to cook something just sit me in a chair and as soon as I whimper, it's done!

I am a difficult case. He listened. And I was heard. He nodded. And his thoughts were full. He pulled it all together, and placed the final piece of the puzzle into place, a piece of the sun.

The goal now is to attempt to calm my nervous system. At the moment I resemble a pixie chick with Parkinson's. Tweettt.

There is rarely a cup of coffee that doesn't end up on my chest. Applying lipstick has become an Olympic event. My left leg drags like Quasimoto. And I have night sweats. I am so hot.

If they can calm my system, we will attempt to regain muscle and stability in my neck and limbs.

If this does not help, we will be looking at another neck surgery to stabilize C7-T2.

I don't know where I will be six months from now. My goals are simple. To hold my head up. And be the girl I was before.

I will have weathered a storm the last year and a half only storm chasers have seen. And I will know that it is not only the body and mind that must be tended to, but a healing of the self. The ego. I am humbled. And grateful for being shown how blessed life can be if you let down your wall, lift your chin to the sky, and see something that before, you never thought could be. The letting go, of me.