My last blog didn't give you any details of who I am and how I got to the point I am at. It all started 7 years ago with a bump on my neck that I presumed was a pimple. The bump grew into a lump, the lump into a golf ball and after a couple months of being teased by my peers it burst. I assumed it was an infection and would go away now that it had burst. It did go away, but then it returned with a couple of friends that took residence on my scalp. Little did I know that soon the 2 would become 4, the 4 become a cluster and the cluster would propagate a colony spread down my neck, face, chest and groin. I was horrified and I made an appointment with a dermatologist who happened to be booked 2 months ahead.
When the day of my appointment arrived I arrived early and sat anxiously in the waiting room. My doctor was a very friendly Jewish man with a warm smile and cowboy boots. Immediately upon hearing what had taken place in the past year he asked me to remove my clothes so he could get a good look. After poking and squeezing for a few moments he declared "you have very aggressive cystic acne, You will need to start an antibiotic course" At the same time he pulled out a green book and handed it to me stating "you will want to think about this as the next step if the antibiotics do not clear this up" I immediately recognized the ID# and waivers of liability. "ACCUTANE!? I have heard about this stuff. It's horrible, it could kill me" I exclaimed.
After discussing the matter in depth my doctor was happy to hear that I would rather try and fight this battle with methods other than isotretinoin, but offered little advice outside of standard western medicine. So I took my prescription for a lengthy regimen of tetracycline's and made a follow up appointment.
My skin cleared and when I arrived for my 3 month follow up my doctor was pleased to see the progress I had made. He decided that I should switch the class of antibiotic I was taking and lower the dosage to minimize the risk of harm a daily antibiotic. I agreed and gladly began my new prescriptions as advised. Things were going as planned until my life suddenly turned tragic when I began dating a girl who's home life was a complete mess. At the age of 17 I began a 'way too serious for my own good, live in relationship' My life was turned upside down and I spiraled out of control like a jet plane that's lost a wing. After about a year I was jobless, in credit card debt to my eyeballs and my relationship with family and friends was ruined.
After moving back home and cutting all ties with the ex girlfriend, I fell into a deep depression. I hated myself and everyone around me and I was angrier than I had ever been in my entire life. I sat in my room for 14+ hours a day, only leaving to somehow continue going to work. Punishing myself became a way of life and soon I had starved myself out of 40lbs and my skin grew worse as the days passed. Before I knew it I was sitting on the floor of the shower, crying and starving as I pulled out clump after clump of my hair. The "cysts" had gotten so bad on my scalp that wherever they decided to grow, I went bald. My life became a sick and twisted game consisting of lonely nights crying myself to sleep or sitting on the bathroom counter with a needle trying to open sores and get just a moment of relief. The pain I felt was unbearable, only surpassed by the defeat I felt when looking in the mirror.
Moving forward about a 6 months we had lost our house, moved into a rental and I was still living a miserable existence. After consulting with my doctor about the turn my skin had taken, the hair loss and the unbearable pain, he decided to put me back on stronger antibiotics and again recommended Accutane. After a while I began to realize that the antibiotics weren't going to fix me. Still depressed and uncertain about what I was going to do I quit my job at OfficeMax and found one with UPS with better compensation. I visited my doctor and told him the news and brought in my signed waivers allowing me to start a course of Accutane. Within a week I had spent my entire paycheck on a doctors appointment, a blood test and my first box of Claravis at $262. The decision to spend all of my money on this treatment was difficult, but I was certain this was it, the cure I needed.
Move forward in time again through a horrible initial breakout, lots of bloody noses, bleeding lips, another doctors appointment and another blood test. Things at the lab checked out okay and my doctor was happy to see that the acne on my face and neck was drying up quickly. Add another month to the timeline and my face was clear and even the scars left behind began to fade. I felt like a human again and I decided that maybe my life could make a turn for the best this time. The cysts that were previously all over my body began to shrink and dry up, leaving behind pits in my flesh. At that point the scars were welcomed and I was overjoyed to feel the burden I had carried all of this time, lifted. My life began to reach a point of stability and I started to come out of the thick shell I had been hiding in. I spent more and more time with my best friend and slowly started to venture out of the house as I had kept myself locked up for such a long time. I gained my weight back and even began to run and workout, gaining fitness and sense of confidence. I completed my 6 month course of Accutane and although my skin had not cleared 100% I was ecstatic with the results I had achieved.
During the next months I felt great and my skin was clear and felt perfect compared to what It had before. After 3 or 4 months however, I began to feel cysts forming on my scalp and my face got oilier. I started to break out on my chin, scalp and groin again, this prompted me to see my derm for a follow up. He explained that this was a common occurrence and I may be a patient requiring a second course of 4-6 months to achieve a full remission. I followed his advice and went for a second course of treatment. Again I suffered an IB, dry skin, bloody noses and all the other side effects I had grown accustomed to. In fact I welcomed the dry lips and eyes as they brought about perfect skin and self confidence. After my second course my skin again looked and felt great, I wasn't 100% cured, but I was pleased enough.
After a good amount of time, another new amazing job opportunity and loads of stress inducing occurrences in life I found myself in the same broken out boat. After a third failed course or Accutane, extreme pain and a trip to the hospital I sat on the floor of my apartment crying my eyes out. Receiving little to no care or concern from the hospital I returned to my dermatologist who decided to request the treatment records from my hospital visit. After looking over the lab results from the ER and my complete treatment history under his care he uttered the words "Hidradenitis Suppurative" He continued on to say "it truly is a curse. This disease is the one disease that makes me feel incompetent as a DR because there is nothing I can do"
How is someone supposed to feel when their Dr. basically tells them there is no hope for a normal life, ever? It has been a very long road since that day 2 years ago. Needle after needle, scalpel after scalpel, here I sit, 23 years old and still desperately looking for the answer to this very difficult problem I have been handed. As I mentioned in my last post, my life has taken a 360 degree turn. I now live in the city with my boyfriend of 2.5 years, I drive a brand new car and I have a salary almost double what I was making in my small hometown. All things I have always told everyone I would have (well besides the boyfriend ) and they all told me I needed to get real, it could never happen.
I grew up very poor. You, yes YOU are only the third person I have ever told. Growing up I hid it from all of my peers. I was already tortured on a daily basis because my name was "Casey" and everyone decided that must mean I was gay. I have also never admitted that to anyone. I never told my family what was happening to me at school. Anyways, here I am today 23 years old and in a relationship with a man(guess I am gay by societal stereotypes) I like to keep my distance from gay culture and labels. My boyfriend and I like to lead a normal life as two normal guys. But back to a point I touched on in my last blog post, I am unhappy. The city life, the money and the material objects I have always longed for didn't solve any of the issues I face. I still struggle on a daily basis with my identity, my relationship (due to my lack of self esteem) and the recurring issues I have with my skin. Currently I take Claravis once a week to control superficial acne, it does nothing to control the HS anymore. My goal in all of this is to lay it all out and make some sense of what has happened and where I need to go from here. Carrying all of this around with me on a daily basis is literally eating me alive. My work performance, relationships, health and very existence are at the hands of this disease at the moment. I struggle to find balance and a sense of control over my emotions and day to day responsibilities. I figured if I explained it to people who share the same struggle with identity and pressure from societal ideals, that I might just make some sense of what I am going through. I am hoping to let go and move on with my life, while learning from others and hopefully inspiring someone to keep pushing forward.
Thank you for reading.