My Polka-Dot Story

For those that know me, I have been a psoriasis fighter for a large portion of my life. With a few spots here and there, and the occasional scalp treatment as a child, it all seemed very manageable. Life was essentially normal.

As my age increased, so did my number of spots. Things were still never too terribly awful though. Again, it was manageable. Lotion, shampoo rinses. Nothing that prevented me from living my life as a normal teenager or early years college student.

In March of 2010, thanks to the request of my then boyfriend, I tried to get myself into the gym. To be more active, to lose weight, to make him happy… the true reason, I’m still not sure of. But this particular visit to the gym changed my life without me having a clue that it had. You see, I developed a callus-type situation on both of my hands from lifting on one of the machines. Having figured it would heal like it always did, I didn’t have a second thought. Come to find, I should have. My hands didn’t heal, leaving open patches of sensitive skin.

After about a month, my parents and I looked into scheduling an appointment with a dermatologist in Columbia – where I was going to college. I was scheduled to leave for a 7-week study abroad trip to Italy at the beginning of May, so the timetable became tight. The dermatologist gave me a cream to use while I was gone, but things continued to get worse while I was there.

Over the course of the next months, I met Ben. Having to explain my circumstances really took a toll. At this point, diagnosis and treatment were unclear and not helpful. Some days were more difficult that others, but at this point, it was only affecting my right hand.

Sooner, rather than later, I was given the official diagnosis of Chronic Pustular Psoriasis for the condition that I was enduring. This came in addition to my “normal” Psoriasis, and a condition known as Dermatitis.  I was put on a drug called Methotrexate after a slew of different topical and light treatments did not work. This medication left me sick most of the time, while not fixing the problem it was meant to.

In 2011, my CPP erupted on my left palm as well. I was heartbroken. Life became unmanageable for the first time. I had a hard time dressing myself, eating… every day tasks that 23 year olds shouldn’t have to think about. It was around this time that we made the decision to switch doctors. It was then that I started seeing a dermatologist in Kansas City, and making the trips.

In the spring of 2012, a ray of hope was presented to my family and me in the form of a customer at my part time job. A woman with exema came through my line and asked me about me about my skin. Giving her an extremely shortened version of my story that I had told about a million times, I told her. The next week when I wasn’t working she came by to drop of a paper bag full of lotion and vitamin E oil with a note telling me the benefits of doing oil baths on dry skin. We tried to this method for a while.

Like all of our other treatments, this one’s effectiveness soon faded as well. I felt very stuck, and started to believe that I would never have the function of my hands again. I would never change a baby’s diaper, I would never cook a full meal for my future husband, I would never be able to do a lot of things. By this time, my CPP had spread to both of my feet.

Despite all of my problems and obstacles, I still managed to graduate from college. A week later, Ben proposed to me with a ring made of a special metal so that I would be able to wear it.

We went back and forth between medication options. I received cortisone injections, tried a number of different topical treatments. I even went to see a specialist at KU Med Center’s dermatology office – one of the “best in the region.” Nothing was working the way that we wanted it to. Nobody had any solid, specific answers as to why things were happening the way that they were. Not only was I baffled by my condition, but also so were the number of doctors that I was seeing. For the first time in my life, I did NOT want to be an individual; I did NOT want to blaze the path. I just wanted somebody to fix me.

After conferring with my doctor regularly, he decided it was time to try an injectable in combination with Neoral.  Our first option did not go as well as we had hoped it would, but we trudged on, finally finding a winning combination in the combination of Enbrel and Neoral.

For a few months, things were manageable again. I was able to live my life, as well as work full time at a Before and After School program in Lee’s Summit, MO.

In November, my world was turned upside down when my hair started to fall out. Being a 24 year old female, I didn’t know what was going on, what I had done wrong, or how to fix it. All I knew was that I had bald spots on my head. I did what any normal girl would do and I tried my very best to hide it. Headbands and hats became my new best friends.

After having a biopsy done, I was diagnosed with Alopecia areata, a hair loss condition that effects 0.1-0.2% of all humans. As my Alopecia areata spread, my diagnosis was changed to Alopecia totalis (affecting the entire scalp). Alopecia is said to be an autoimmune disorder heavily impacted by stress.

With the added stress of losing my hair, my plaque psoriasis flared like nobody’s business. Things progressed, it got infected, and for a time I couldn’t wear shoes.

In January, I asked Ben to rush and have our engagement pictures taken before I lost what hair I had left. At this point, I’d lost about 50% of the hair on my scalp. Being the gracious, understanding, and loving man that he is, that’s what we did. Hat and thin hair in tow.

On February 10, 2013, I looked at myself in the mirror and decided that it was time. That evening, in a Sports Clips barber shop, I made the courageous decision to shave off of what hair I had left on my head. At this point, my main concern was getting my scalp healthy to increase the chances of my hair growing back in time for my wedding.

I chose not to get a wig, although my aunt offered to buy me one. Being in the midst of this fight, I didn’t want to lose sight of who I was, and this was who I was. I turned to bows.

Over the past 9 months since cutting my hair, I’ve experienced growth. Not only in terms of my hair, but also in the sense of being a human. I have grown to accept, love, and even be thankful for my conditions. Sure, they may have torn me down to the bare minimum possible of being a woman, of being a person, but I have come out stronger. Even though there are bad days, my skin still breaks out some, and it’s still hard to cook over a hot stove, I know that I am not alone. Not only have I grown, but also the people around me have grown to love me in a different way as well. I am a survivor, and my story doesn’t end here.