Installment II

When we left NYC and ended up in a small town in the mountains of North Carolina, my son was six months old. By that time, I was experiencing pretty severe cognitive decline. I had no ability to sequence; I couldn't plan or finish anything. I wasn’t able to concentrate and was often over stimulated. I became easily flustered and had trouble recalling words; I even started stammering. Eventually, I had no short term memory and had lost huge chunks of my long term memory. The worst part was that I was completely aware of just how bad things had gotten. 

Things would get worse, much worse, before I had any idea of what was wrong. I got close to the answers but was easily derailed and gave up. One of the first people I met in North Carolina suggested that I may have gluten intolerance. She told me that she discovered her own Celiac Disease after adopting her daughter who had many health problems, including a persistent and mysterious rash. When doctors could not help her baby, she began her own research and eventually discovered that her daughter was suffering from Celiac Disease. Through her research, she recognized many of the symptoms in herself. While her daughter's symptoms first presented in the skin (dermatitis herpetiformis), hers manifested as neurological problems, some of which she recognized in me. She suggested that I ask my doctor for a celiac test, a simple blood test that my insurance company would cover with a referral. I immediately made an appointment with my doctor and felt a tiny sliver of hope that I might be close to an answer. 

That hope was demolished when my doctor scoffed at my request for a celiac panel. "Celiac is a wasting disease," he said while glancing up and down my body, "and clearly, you are not wasting." I still hadn't lost all of the weight from my pregnancy and was easily 20-30 pounds overweight. He refused to refer me for the blood test, referring me instead to a psychiatrist. I was furious for a while but soon became consumed by hopelessness. I don't remember much of the next two and a half years, only that I was sinking deeper and deeper into despair.

What's Wrong With Me?

In my mid twenties, I lived in NYC and worked as an office manager at a psychotherapy center in Chelsea. It was my favorite job. I loved my boss, the therapists, the clients, the deli guys next door, the Debbie Harry sightings; I loved everything about that job (except having to deal with insurance companies).  

During my time there, I became fairly familiar with the DSM-IV and seemed to recognize parts of my struggles in many of the codes: 314.00 (ADD) , 300.02 (Generalized Anxiety Disorder), 300.3 (Obsessive-Compulsive Disorder), 296.30 (Major Depressive Disorder, Recurrent). One of the therapists, my friend, L., got very annoyed with me whenever he would see me perusing pages and considering criteria. "Stop pathologizing yourself," he'd say. "There is nothing wrong with you!"  

But there was...  

Something was very wrong with me. I always knew it even if I couldn't name it. A decade would pass before I began to figure things out. It would take having a baby (and consequently, losing my mind) and finding a good neurologist to learn that most of my struggles originated with having undiagnosed Narcolepsy since early childhood. Later, I would figure out that most of my struggles with Narcolepsy may have been exacerbated by undiagnosed Celiac Disease.  

My intentions are primarily to collect, organize and make sense of my thoughts and experiences living with Narcolepsy and Celiac Disease both before and after diagnosis. Even with my super hero neurologist, I had to figure out most things on my own. It has been a difficult journey, and the internet continues to be my most valuable resource. Through online forums and blogs, I have been able to make connections that I could not have made alone, which is my main motivation for starting this blog.