March 31, 2006
This was the first damp, dreary day that was the onset of what would be a series of unfortunate and catastrophic events.Â I awoke earlier than usual, as I was assigned to a special project with the Department of Education and was not traveling to my regular school building.Â I went into the shower and noticed clumps of hair shedding and falling onto the shower floor.Â I proceeded on with my usual routine not really thinking it was anything really serious to worry about. Â After all, your body could sometimes go through extreme hormonal changes after having a baby. As the day progressed, I noticed tons ofÂ brown hair strandsÂ stuck to my red sweater and black jacket.Â I completed my work day and phoned a dermatology practice that I had visited in the past and begged for an emergency appointment.Â Since many of the doctors in the practice were religious, there were no appointments that Friday afternoon. The next morning I awoke to find probably hundreds of strands of hair on my pillow case and the surrounding area by my head.Â I began filling Ziploc baggies full of clumps of shedding hairs and felt something was going terribly wrong.Â Sunday morning could not come soon enough.
On Sunday, I visited the dermatology office, and I was told I had the onset of alopecia.Â The doctor and the nurse gave me about 20 steroid injections into my head to try to halt the process and had me schedule for return visits to try PUVA treatments and more steroid injections.Â I went alone to many of my appointments.
After the weekend,Â I immediately called myÂ Internist on Monday morningÂ and asked to be seen right away.Â I got an early morning appointment and brought my Ziploc baggiesÂ with me.Â MyÂ Internist did not really know what was happening and suggested I buy a wide tooth comb and very gently comb my hair.Â I regretfully and painfully discarded my Ziploc bags full of probably thousands of strands of hair at the doctorâ€™s office, as my InternistÂ did not think it was worthwhile to save my hair.Â I believe I saved one strand of hair which I wrapped into a tissue and rested inside the top drawer of my dresser.
On Tuesday, I spoke to my hairdresser and scheduled the last appointment of the dayÂ and asked him about my past hair dye appointment to see if any products had changed, but nothing had.Â I went in for my appointment when the shop was nearly emptyÂ and begin cutting whatever long strands were left, as I knew what the inevitable would be and now have experienced the dramatic physical change that so many women experience with morbid disease processes. I left the shop with a baseball cap so saddened, as back in November 2005, my hairdresser put my long, thick hair in an updo for my sisterâ€™s wedding.Â What was happening?
Within five days, I went through a radical transformation, and by Wednesday,Â my scalp was basically bald.Â My husband and I took off from work and visited a wig shop in Franklin Square.Â I found some wigs close in color to my former natural hair and length.Â I went into a private dressing room and began trying on a few wigs with the saleswoman. I remembered not wanting to walk out to show my husband until I found something that looked like the old me as much as possible.Â I walked out with my head bowed down at first.Â At that moment, I did not have the courage to stand tall fearing his reaction. We all kind of initially stood silent until the silence broke, and the three of us agreed my new appearance was fitting.Â This was probably one of the hardest things I have ever had to do in my life.
I returned to work on Thursday with my new hairdo.Â I walked into the main office to sign in with my head held down, made my visit as quick as possible and scurried along to my office.Â Some of my colleagues immediately noticed, and we began talking about this distressing disease process.Â Walking into that office was probably the second hardest thing I had to do with such feelings of insecurity and shame.
During the following weekend,Â I attended my mother-in-laws 80th birthday and had to begin explaining to my husbandâ€™s relatives what was happening.Â It took all of my might to put on a happy face and celebrate that day.
Written by Tara Notrica
No words just know that even if I can’t understand your personal experience I can understand on a very small level the hair loss (in my case hair shedding/loss due to medications on/off and much distress over it but I’ve been able to find small ways hopefully to slow it down) – I wish I had something better to say that would help you to know your surrounded by people who truly understand even if it is b/c of other rare issues.
Hugs, welcome to the Team!
MPS I H/S
For Tara’s first two posts in the series, see the links below:
Thank you for taking your time to comment on my blog. I have been writing for several years. I just write about the things I have experienced as I battle a rare disease. I hope this helps you.