Coming Back from Guillen Barre

Nearly a year ago, I began a relationship with Guillen Barre. Guillen Barre is not some handsome Frenchman, but a debilitating neurological illness that happens to 1 in 100,000 people. It is an immune reaction, usually post viral, or immunization, in which your body mistakes your nerve cells for a virus and subsequently sets out to destroy them. Picture the old video game where the ships are destroying aliens little by little until they are obliterated. My nerves were being obliterated little by little by my over active immune system.

My outcome was good because it was recognized early in the acute phase, and being a nurse, I could rudimentarily diagnose my illnesses and knew enough to seek medical attention. I must admit, this took time to figure out and I played a rousing game of Denial. Basically I learned, if things seem off, listen to your body and take action.

The day my affair began, I had just gotten back from a walk. My body seemed tingly, like my nerves were angry. All very subtle and wasn't given much thought. I got busy preparing dishes for a party I was catering. My legs felt heavy and I started to get a lower back ache. I blew it off as residuals from my earlier walk. My arms and hands started to weaken. I was extremely drained, and was near exhaustion. I couldn't open the cap to a carton of whipping cream, and had to stab at it with a knife. By the mid afternoon, my back was so excruciating I couldn't stand up strait. I had to rest in-between preparations and was perplexed as to what was happening. I was able to finish the job and deliver the goods, but it sapped every last minutia of my energy. Now, still deluded, I believed it was because I had thrown out my back.

The only relief was to lay prone with the heating pad on my back. I had to hold onto the wall, hunched over, to get anywhere in the house and was left ready for a long nap after a short trip to the bathroom. This went on for two days, forcing me to call in sick to work. My self diagnosis, after letting go of the back injury theory, was post-viral syndrome. I remembered I had a viral illness two weeks prior. Viral syndrome can cause similar symptoms as those I was experiencing. On day three, I attempted to go to work. I almost passed out in the shower and laid back down crying to my husband, "What is the matter with me?" By now, my back felt like it was going to crack in two, I had no hand grasp strength and when I coughed, I could not get my abdominal muscles to assist with any productive effort. I asked my husband to take me to the Emergency Room.

Upon arrival to the ER, I was triaged, and I must not have appeared in too bad of shape, or at least stroke was ruled out, so they sat me in a wheelchair in the waiting room. Since it was the middle of the night, I was forced to watch a repetitive info-mercial for three hours. I think it was about dental restorations or something as banal. I had sent my husband home, still not thinking this was anything serious, and as an ER nurse myself, there was no point in both of us having to wait and for me having to endure being stared at by a worried spouse.

At change of shift I was taken back, helped to the exam table and met with a Nurse Practitioner. I told my story and then she mysteriously disappeared. Things began to intensify and move, and I was whisked off to the CT scanner. "This is weird," I thought. Still oblivious to my pending diagnosis and thinking some steroids would do the trick and anticipating discharge, I was dually surprised when there was a Neurologist waiting, and in a matter of fact voice and demeanor, she informed me she thought I had Guillen Barre. That was a light bulb moment as all my symptoms finally made sense. "Wow," I said shocked, but yet sensing peace at finally knowing what was wrong.

After blood work, an IV, and a spinal tap, I was admitted to the hospital. Then began a several day litany of testing perplexity. Trying to explain Guillen Barre to your lay family proved to be about the most challenging obstacle. Unable to comprehend the name of the disease, let alone the pathology, my sister finally came up with this rendition. "My sister has Gilligan's Island. She is on the island, and Ginger and Maryann are fighting with each other and getting on the nerves of Skipper and Gilligan." "Close enough," I thought. I knew a smattering about Guillen Barre, and knew the outcome could be dreadful. I didn't want to go to that place in my brain, until another high strung sister pointed out, with her quivery phone voice, and after her Google education said, "This is really bad...." "Um, I know..." I said, almost laughing about this being possibly the worst comforting attempt ever.

One of the residents was unconvinced it was Guillen Barre as my lab results weren't that significant. I literally had to make a case that it couldn't be anything else. This was not who I was. I was active, involved, and now I was broken and couldn't walk without assistance in a matter of days. I couldn't believe I was having to beg for a diagnosis! The final test was a nerve conduction study where the Doctor explained it by pragmatically saying, "I will be sticking needles into your muscles." "What? Really? Okay then." I had given up. "Do your worst," I mumbled with complacency.

Finally the Medical team was convinced I had the disease and the skeptical resident chimed in saying, "This can lead to paralysis and eventually death." "Again, you need to work on your delivery buddy." "You ain't no Marcus Welby," I mused. Keeping a sense of humor kept me grounded and gave me some control over the uncontrollable.

I received five days of immunoglobulin therapy. This is where they flush out your hyper active antibodies with more reasonable, mellow ones. During that time period I received Physical and Occupational Therapy where I had to practice with a walker and try and pick up beads and put them in a jar. They made me some adaptable pieces like a pen stuffed into a pool noodle and gave me some therapy clay to work on strength. I got to read about it in a pamphlet called: "Know your Clay." The hospital stay was almost pleasant, the food was good. The worst part was the night, trying to sleep on the small, caged, plastic, sweaty, mattress, and being left alone with my racing thoughts. I was grateful to the Medical team (sans Marcus) and Nursing staff for their knowledge, kind care, and for those who offered up prayer. I truly felt encompassed by support and love.

My body was fairly devastated and I had to work hard to recover. Exercise, eating well, taking supplements, to help with nerve repair, all assisted my recovery. I was always exhausted and slept 10-12 hours a night. In six months I no longer had to see the neurologist, and am now, almost a year later, almost back to baseline. If I am quiet at night, I can still feel the tingling, imagining my body playing the video game but at a lower volume and intensity. I feel lucky as my onset and diagnosis were caught rapidly, and my treatment was timely. I have heard of cases where symptoms go on for weeks before being diagnosed leading to devastating outcomes. My two pieces of advice? Listen to your body, if something seems wrong, take action and number two? If you have to do something that is 1 in 100,000, win a lottery.