How I felt when I first lost my hair. And how I feel now.
Installment II by Guest Blogger, Asta Cardinale

by Admin, 3rd August 2015

I had succeeded once in overcoming alopecia areata. For the better part of a twelve year recovery period I had a beautiful, healthy head of hair. During this time I met my husband and changed careers. I became a certified Pilates instructor and landed a great job at a private health club. I started out teaching groups classes. As my experience and reputation grew, I took on private clients as well. I found teaching so rewarding. My clients would say that because their core was stronger, they no longer had back or neck pain. Others said that because of my classes, they felt taller or looked better in their favorite jeans. It didn’t take long before my schedule maxed-out. Regardless, I always tried to find time for new clients who ask me to squeeze them in. I thrived on feeling that I was indispensable. For several years I left the house by 7:30 in the morning and wouldn’t return in the evening until after eight. I taught most weekends as well.

Eventually I became chronically tired and stressed. Most nights I had trouble getting to sleep, with the previous day’s activities playing over and over in my mind. Several times, I woke myself in the middle of the night cueing exercises. I was teaching in my sleep! Then my hair started falling out again. I called my dermatologist to make an appointment but, he had a wait list. It would take months to get in to see him. Instead, I was referred to another dermatologist.

At my first visit, the new doctor gave me injections in the obvious bald spots. I showed him other areas where I had burning and itching, a sign that hair would start to fall out (this only happens to some alopecia patients.) He examined those areas. “No, there’s no hair loss there” he said putting away the syringe. I told him that the injections along with prednisone had worked for me in the past. He refused to give me a prescription, explaining that alopecia wasn’t a disease serious enough to warrant prescribing such a drug with all its potential side effects. He told me to come back in six weeks, but, when I tried booking my next appointment with the receptionist I was told there were no openings for two months!

Those two months seemed like two years, with my hair falling out by the handfuls. Thankfully, my husband was very supportive, but even still I was embarrassed for him to see my bald spots. I became increasingly self-conscious and withdrawn making it harder to leave the house each morning. I started wearing sports caps to teach. A client once asked jokingly if I was having a ‘bad hair day?’ If only she knew. I learned that I was the topic of the rumor mill the day a woman came up after class and whispered “It’s not cancer like everyone is saying, is it?” I smiled and said no, while fighting hard to push back tears.

One afternoon while I was waiting for a client, the head of the fitness department pulled me aside. “Is everything okay?” he asked. It took me a moment to realize he was talking about my hair. I felt my eyes well up as I tried to explain that I had an auto-immune disorder, but that otherwise I was fine.  “You don’t have to explain. I just wanted to know if you were okay.” I could tell he felt bad that he’d embarrassed me. I assured him that I was okay, but, what I really wanted was for the ground to open up and swallow me whole.

The more I tried to forget about my hair, the more people wanted to know about it. It’s as though they wanted to figure out what I had done to cause the alopecia, thus ensuring it wouldn’t happen to them. Everyone close to me offered up possible solutions such as going to a naturopath, reducing my stress, and cutting gluten out of my diet. I felt so frustrated and hopeless. I was already doing all that and more, yet nothing was working. Then I got the email that circulated through the fitness department. Some of the trainers were practicing holistic therapies which involved group meditation. In an effort to help me ‘heal’, I was chosen as the weekly subject of their meditation! It was all done out of genuine caring and concern, but I was so humiliated.

After a couple more rounds of injections, I’d lost more than half my hair. It was clear that the cortisone was not going to work this time around. At my next appointment the doctor didn’t bother taking out the syringe. Instead, he suggested I go to another clinic for Diphenylcyclopropenone (or DPCP) which had reported some success in treating alopecia.

I started the DPCP the following week. The doctor introduced himself and explained how he was going to put an irritant on my scalp to encourage the immune cells on the surface to go back down into the dermis. Then he smeared this stuff that smelled like nail polish remover all over my head. I was to leave it on until the evening. I did get some itching later that day, which meant the irritant was working.

Stopping the cortisone treatments rapidly exacerbated the hair loss and what was left had the consistency of straw. When I went back for my next DPCP appointment, the doctor walked in again, introduced himself, and explained the process. “I know,” I said “you explained it all to me last week.” The doctor looked puzzled. Then it occurred to me that he didn’t recognize me. I suddenly felt a loss of identity. I begged the doctor to put me on prednisone because it was what had worked for me in the past. He told me that if I went on prednisone, I would have to stop the DPCP since it would cancel out the effects. Sensing my desperation, he wrote me the prescription. I knew it would take time for the drugs to kick in, but, at least now I felt I had a chance.

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