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#1 Flybykp

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Posted 09 October 2013 - 09:02 PM

I have posted this as a blog too, but decided to post everything I blog in a forum also...

 

 

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I have posted this as a blog too, but decided to post everything I blog in a forum also...

 

 

A long ways back I used to be a member of this community as flyBOYkp.. Seeing as I no longer have access to the email address attached to that username, I have created a new account.
 
A lot has transpired since my postings from 4 years ago when I began a daily regimen of Accutane for "acne"...
 
Long story short; Accutane failed once, twice and then a third time. Why? Accutane is successfully used to treat acne, not HS AKA "Hidradenitis Suppurative" If you are not familiar with this ailment, it is an inflammatory disease of certain glands within the skin, there is no cure. This disease has dictated the better part of my life for the past 7 years.
 
I came back to acne.org because I felt that of all places I've ever blogged, it is here I would be understood most. I believe that what connects everyone in this community is not acne, dry skin, oily skin, peroxide, proactiv, Accutane or any of the various remedies on the market. I believe that the way we feel about and the things we tell ourselves is what we have in common. I have recently realized that one large part of my life that has been missing the past couple of years is writing. I used to come onto this website and blog about the way I felt and what I was having a hard time with or even how I was progressing. During the past couple of years, a lot of tremendous change has happened in my life. Having moved from my hometown, to a large city and landing what seemed to be an impossible job, I should be happy. The problem is, I seem to have lost connection with the very things that kept my feet on the ground.
 
Living paycheck to paycheck in my crappy apartment didn't seem all of that great a couple of years ago, but I felt a lot happier and secure than I do now. I have everything going for me, yet I fight it. Why? That is what I am trying to sort out and it is proving a lot more difficult than I ever imagined. As a last resort I started seeing a therapist and after 3 months I stopped going because I had turned it into another burden for myself to juggle. It isn't easy to talk to anyone. Even a therapist cannot begin to imagine the physical and emotional anguish I have survived in the past 7 years. I have become so numb that expressing anything besides anger has become nearly impossible. I used to cry almost every night and beg God to have mercy and relieve me from the pain I was feeling. I spent hours online blogging about the pain I felt and trying to get anyone to understand where I was coming from. Unfortunately, I just looked like an ass.
 
The one thing I do miss is having an outlet for the intense emotions I feel due to my struggle. High atop my shoulders I carry all of the stresses of day to day life, as well as the feelings of worthlessness and shame that come with having this skin disease. This blog will not just deal with skin, treatments and progress I hope to make. I hope to find an audience of people who can relate, share and hopefully find some inspiration in the journey of my life.



#2 mrsrobinson

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Posted 10 October 2013 - 06:17 AM

your skin looks great in that photo, very cool with the plane in the back

 

yes writing can be good for the soul, and you are right, there are kindred souls here- so blog away

 

I was one of the rare ones that accutane didn't work for, so I know how you feel, even on this site it works for EVERYONE, they may or may not suffer through the one month initial breakout and then the miracle occurs......for the handful of us in the outlying fringe, it can be a very depressing place to be.  I just kept pushing, journaling and documenting what I needed to do to get my acne to a very manageable state...took longer and it's very hard to stick to the routine but I do it.

 

I look forward to reading your blog



#3 Flybykp

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Posted 11 October 2013 - 12:29 AM

your skin looks great in that photo, very cool with the plane in the back

 

yes writing can be good for the soul, and you are right, there are kindred souls here- so blog away

 

I was one of the rare ones that accutane didn't work for, so I know how you feel, even on this site it works for EVERYONE, they may or may not suffer through the one month initial breakout and then the miracle occurs......for the handful of us in the outlying fringe, it can be a very depressing place to be.  I just kept pushing, journaling and documenting what I needed to do to get my acne to a very manageable state...took longer and it's very hard to stick to the routine but I do it.

 

I look forward to reading your blog

 

Thank you for your kind words. As you will read in my next blog post, Accutane wasn't exactly a miracle for myself either. I am glad to hear of your tenacity and that you were able to maintain a manageable point. That is what I strive for in my skin.


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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 tongue.png) 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.



#4 Flybykp

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Posted 14 October 2013 - 01:43 AM

I know that almost every over emotional person says this at one point but I'm being serious..
 
There was a point in live where the only thing I had was music. From the depths of me, music was able to extract every difficult emotion that was I was otherwise unable to feel. Sometimes that was sadness, sometimes I needed to cry, and sometimes music was the only part of my life that could bring about the last of my happiness.
 
Yesterday during a long drive up north to visit home, I flipped through most of the music on my Iphone and was reminded of a few songs that play a large part in the soundtrack to my life. I thought I would share a couple of them because I feel that the majority of people who have had painful circumstances to deal with have felt the same way about certain songs.
 
For the first blog I want to talk about the song Eastern Glow by The Album Leaf
 
I first heard this song when I was 16 while watching an episode of The OC. The scene entails Marissa sitting on the beach with a bottle of liquor, calling Ryan and when he picks up she says nothing. She just sits and listens to him say "hello" Here is a clip with the song if you would like to watch: http://youtu.be/9iJrdPjfxyI
 
When I hear this song, It always reminds me of pain and change. Sometimes this song was the only reason I was able to feel what I needed to, which was usually pain I bottled up and eventually went numb. This song brings it back to the top. I see Marissa on the beach and I can feel her heavy heart. The pain she feels when Ryan answers the phone and the resignation she felt with each swallow is something I can relate to. It reminds me of what pain looks like and all of the times I didn't realize the amount of pain I was carrying around with me.
 
The pain and sorrow I felt every day that I woke up me. The way if feels to clutch your chest because the pain you feel makes it seem as though a broken heart is actually possible. The way it feels to starve yourself sick and watch your body disappear. The way it feels to die on the inside and be a useless being on the outside. The way it feels to look in the mirror and see your body being defeated and feeling like there is nothing that can help. Drinking yourself into a stupor in an attempt to forget the pain. Walking through your empty house for the last time, not knowing if you will ever find home again.  Walking on the wet pavement with the heavy clouds so low you could almost touch them. Telling your mom that you hate her because she has never understood the pain you've endured. Buying every product on the shelves and being crushed when It doesn't change any of the ugly you see in yourself. Wondering what you did to deserve such a fate and trying to place the blame in your own hands. Constantly developing a new disclaimer for people because you want to make sure they know it isn't your fault. Trying to be anyone, anything besides what you are. Loving you, but being afraid that you could never love me and all of this.
 
 
Sitting outside on my driveway looking up at the moon as if it were the face of God and begging for a different life is what this song means to me.






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