Moving Forward

Unfortunately it is official that I will not be participating in the clinical trial for an alopecia areata treatment.  I reached out to a different medical office participating in the trial to see if they would have better success, but after two more unsuccessful blood drawing attempts, I decided that I was done.  Over the course of four appointments at two different offices, I have been stuck ten times, and only one of those produced any blood at all (although even that was not enough).  It was a difficult decision to make, but the study would have required continuous blood testing.  I might hate my hair loss, but my life is about so much more than my hair, and I will continue to live it.

In the meantime, I had not been sitting idly by, I have stuck to my commitment to start living now instead of waiting for some moment that isn’t guaranteed.  Some of my plans include making some changes in my wardrobe, getting out more, and finally mastering makeup, but that is not easy to do on my budget.  Like many millennials, I have student loan debt.  Additionally, I am a substitute teacher, which means my summer income is nonexistent.  Essentially, I want to do this while not using any of my savings.  This means utilizing gift cards and store credits that I have left unclaimed, and I am planning to go thrift store shopping for the first time.  I am also searching no-cost and low-cost venues to explore including the local library and using restaurant gift cards that I have accumulated.  My first goal is to work on dressing nicer, and going out at least once per week, even if it’s just to get coffee.

I put this plan into motion by meeting up with a friend that I consider fashionable.  This was a perfect opportunity to try a new dress that I bought, and I threw on a simple black headwrap to conceal my hair loss.  I also brought a red scarf in my bag just in case I decided to make a bolder choice, and with her encouragement, I did.  Although I haven’t worn the red scarf again, I have made sure that my outfit choices for the past week have been more fashionable than usual, and no more saving good outfits for a possible special occasion.  It has been a good start, but I know that I still have a lot of work to do if I want these changes to become permanent.  Week #2 is when the real work begins.

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A Disappointing Day

 

Hello everyone,

Today I am writing my first post with a bald head, a sore arm, and more than a little frustration.  For the past five years I have lived with alopecia areata, an autoimmune disease that causes my immune system to attack my hair follicles.  Alopecia areata, which is often simply called alopecia, causes patches of hair loss and can progress all the way to alopecia universalis, the complete loss of body hair.  In the past year, my hair loss has progressed into alopecia totalis, which means I have now lost almost all the hair on my scalp.  My hair has gone through many periods of regrowth and active hair loss over the years, and I have tried many different treatments to help with hair growth, producing varied results.

Recently, my dermatologist told me about a clinical trial for an experimental medication and put me in contact with one of the local offices conducting the study.  I came in for a consultation on June 26th and was told that I appeared to be a good candidate for the trial.  Of course, some initial testing was required to confirm this, and to serve as a baseline for any other tests throughout the study period.  During this initial visit, they wanted to collect urine and blood samples, and to conduct an EKG, but after three unsuccessful blood drawing attempts, I decided to schedule an appointment to try again the following week.  During the next visit, the EKG was performed, and the urine sample was collected, but there were more problems when it came to collecting blood.  On the third attempt some blood finally came out, but not enough to fill all seven the tubes completely.  I let the staff try a fourth time with no success, and finally decided to submit what had been collected, and hope that it would be enough.  Finally, the office called me last week to confirm that I would need to try a third time.  I came back today for the third appointment, but after another failed attempt, I decided not to let them try again.  Bloodwork is required for all appointments related to the trial, which means I would have to deal with this issue every time.  The staff gave their apologies, and I left their office for the last time.

This is a particularly painful setback for me, because I allowed myself to dream that I would have a full head of hair in just a few months, and now I am not certain that this is in the cards for me.  Furthermore, one of the requirements of participation was to discontinue all current alopecia treatments, which means I have not taken any other medication for a month.  I am currently in a treatment limbo and will have to soon reevaluate what my treatment plan should be.  However, this experience has also made me feel more determined than ever to not put my life on hold.  I have spent too much time putting things off until my hair looks acceptable, but if I am waiting to have perfect hair, I might be waiting forever.