I continued visiting the dermatology office for PUVA treatments about three times a week. Shortly after treatments began, my scalp began to burn and become extremely sensitive and irritated. I then had to be prescribed with a topical cream for what was like a bad sunburn. I also visited another dermatologist who reconfirmed alopecia. The dermatologist performed a scalp biopsy, which was quite painful, to determine whether my case was scarring or non-scarring alopecia. The good news at that time was that it was non-scarring and did have the potential to regrow. Somewhere on the top of my scalp remains a small scar from the punch biopsy, one of many to come to mark the evidence of the evil course and inflicted damage of this disease process.
I visited another dermatologist and began using topical steroids and other chemical agents to try to stimulate regrowth. My bathroom was transformed from a display of hair sprays, gels, mousses and other feminine hair products to topical creams, boxes of Rogaine for Men (as I needed the 5% solution) and immunomodulator topical creams, all in an effort to try to regrow my hair. Not only did the bathroom display the absence of pretty, packaged products, but now left behind the odors reminiscent of strong, harsh chemicals. It was a very daunting and painstaking process.
In mid-April, I was scheduled to go to Florida during my spring break with my children but could not make the trip. By that time, my scalp lacked any traces of even a single strand of hair and was highly irritated from treatments. I began shopping for cotton bandanas, Doo-Rags and other scarves to wrap around my head. My dresser drawer became filled with head covering articles that were so uncharacteristic of my suburban neighborhood. I always wore my head covered, even to bed, and never exposed my bald scalp to my husband or children. It was just too painful.
I took my son to the park during the vacation, and we ran into a little boy who Jared liked very much. Unfortunately, I had never met his mother before, and here I was wearing a baseball cap and a Doo-Rag wrapped around my very irritated scalp. My appearance was quite awkward. Talk about making a first impression! My dear friend E had asked me if I had ever asked her what she thought. I never did.
Sometime during the spring break, I began to develop muscle pain, muscle weakness, back pain, lethargy, and fatigue and felt as though I was sleeping on rocks. I was not able to return to work following the break and took off some time.
I had a consultation with another internist who was the internist to my elderly grandparents that they had used for many years. He detected some abnormalities in my blood work related to Parvo B19 virus and other autoimmune markers. The systemic course of steroids and immunosuppressive drug regimen began. If I only knew what I was in store for!
I returned to work and continued visiting with my new internist for what would be the beginning of constant blood monitoring. I felt somewhat better during the months of May and June, and things remained status quo. I purchased a new long, straight wig that I was actually complemented on, as my story was not completely public. After receiving that compliment from a mother of a child on the little league team, I remember turning to her, thanking her, telling her it was not my hair but a hair piece and beginning to just weep, barely able to contain myself. J had no knowledge of what was happening at the time.
Written by Tara Notrica