I consulted with a Specialist who was now primarily treating pediatric patients. I had seen him a few years back for pseudo-anaphylactic episodes and difficulty conceiving. Little did we know those would eventually become extremely important clues to my ultimate final diagnosis. He recommended that I learn to accept the hair loss and treat myself to some beautiful “HERMES” scarves, buy myself a pair of big hoop earrings and basically call it a day. He really did not believe it was anything related to his specialty area. In my mind, that was the beginning of some totally ludicrous comments made. In retrospect, I often wondered if many doctors would have had the same laissez-faire attitude if this was perhaps their wife, daughter or any other close family member.
My eyebrows and eyelashes began to shed, and I visited a dermatologist in NYC who diagnosed alopecia universalis explaining that I will ultimately lose all body hair. I was so embarrassed when I had to expose my scalp to him in front of my husband for an extended period of time. Remember, this was still a relatively new radical appearance change.
I was at a pool party with my son on an extremely hot day. I remember wearing my wig with a bandana wrapped around my head and some of the women were complaining about how hot it was. I turned to someone and just replied “If you think it’s hot try wearing a wig on top of your head and then you will really know what hot is.”
My health began to deteriorate, and the rounds of hospitalizations began. I began to develop serious symptoms including muscle pain, muscle weakness, fatigue, heat sensitivity, photosensitivity, blood pressure fluctuations, nail clubbing, nail pitting and lethargy. I was hospitalized for 5 days in August and evaluated by a team of Rheumatologists. The team diagnosed me with undifferentiated autoimmune disease and wanted to trial an anti-malarial drug that was ultimately decided against.
I dreaded the start of a new school year in so many senses. Just when I was becoming comfortable with the teachers from last year, it was time to start anew. That meant that once again, I had to alert complete strangers to our home situation and all of the possibilities of the so many unknowns. It was nothing to be ashamed or embarrassed about but nevertheless was still such a difficult task to complete. I was however always comforted in the thought of knowing that the Principal always ensured my children were appropriately placed with teachers who were kind, caring, compassionate and most of all had big hearts.
My condition stabilized, and I returned to work. Some newly hired staff members complimented me on my hair not knowing my health condition. I openly told them it was a hair piece. C, one of my saviors, decided she wanted to begin filling in my eyebrows with make-up, and we began experimenting during lunch hours. I ultimately liked the way they looked, so I began purchasing some Clinique eye shadow packs and the stencils to apply eyebrows. It was very hard to get them even at first, but I eventually got the gist of it.
The steroid dosage and Cyclosporine A dosage were rapidly increased. Not only was I completely bald, but my face started to become disfigured from the large doses of steroids. My assistant principal would always tell me I looked so cute. During my darkest moments, he would always know how to brighten my day with a ray of sunshine and a barrel of laughter.
My health began to take a radical downfall. I began to develop extreme fatigue, muscle pain, weakness, light-headedness, dizziness, numbness, tingling sensations, extreme heat sensitivity, pulsating headaches, tinnitus, facial discoloration and on many occasions, I was on the brink of passing out. On Thanksgiving Day, I had to stop serving dinner and stretch out across my wooden kitchen floor, as I almost passed out in my kitchen, because my body began having trouble regulating temperature changes. I believe at that point a third drug was added to the mix.
I was hospitalized two times. One time, I was on my way to work, and I began to flush. I remembered opening my window to get some fresh air then suddenly have a very strange sensation overcome my body and just said to myself “Oh Shit”. It felt as though I had blacked out for a second. I then started to tremble all over. I got off the highway and pulled into a Burger King parking lot and immediately called 911. An ambulance arrived and took me to the hospital. My blood pressure was pretty high, and I was being evaluated for a possible heart attack. I remember being solely in a Cardiac Unit of the Emergency Department and noticing the tremendous amount of cold steel all around me.
My family was scheduled to go to Disney World over the Christmas vacation. I think I was hospitalized until December 23rd, and once again our trip had to be cancelled. My health continued to decline, and I was taken off of all my medication in order to try to get a better handle on what was going on. Needless to say, I never went back to work after the Christmas break and went out on a Health Care Leave. I also stopped driving from that point on which completely altered our lives. My husband now had the added responsibility of cramming all of the errands into very short weekends often accompanied by the kids. By some miracle, we always managed to find a way.
Written by Tara Notrica