Spring is officially here. It is currently 61 degrees.
This is a time of year when most people celebrate and look forward to the warming weather. I on the other hand can only moan and dread what lies ahead for the next 6 months or more.
Living with HS affects all areas of your life, including how you react to the weather. Warm/hot weather to me is HELL! While I do love warm weather, HS does not. And HS always wins! HS cares not want I want or what I would like to do or wear, HS is the most selfish beast!
I cannot dress in cute tank tops or sleeveless shirts, no summer dresses for me. I must remain covered to hide the boils that are constantly draining, the scarring that is hideous to look at and to minimize skin friction that causes even more boils. When I sweat more boils develop - so begins an endless cycle in the spring/summer of trying to stay cool, but enjoy the weather.
What a wonderful world it would be to be normal and enjoy summer.
Tuesday, March 22, 2011
Saturday, March 19, 2011
March 19, 2011 - Background
Living with HS (http://en.wikipedia.org/wiki/Hidradenitis_suppurativa) has become a living hell. There is not a day that goes by in my life that is not in some way affected by this disorder. Simple things that most people take for granted are not always so easy for me. Enjoying life is not easy for me.............. What enjoyment is there in being in pain everyday, and worse yet, knowing that there is no cure and will most likely never get better.
I first noticed signs of HS when I was a teenager. Of course, I had no idea what it was and hid it for years from everyone. My mother is the type that you did not talk about certain things or body parts - no matter what. I was actually 40 years old before I told my mother about it. That's 26 years of hidden pain. I remember thinking is everyone like this?? Do other people's thighs look like this?? Is there something I am doing wrong?? Do I not keep myself clean enough? A thousand questions and no answers or anyone to discuss it with. And so began my self-medicating and trial and error period.
During this time I tried every acne medicine, cleaner, scrub etc, that hit the market, hoping something would work. I tried peroxide, witch hazel, rubbing alcohol, bleach everything imaginable, all to no avail. I showered 2 and 3 times a day, thinking it was a hygiene issue. Nothing worked.......
The older I became the worse the HS got. At the age of 26, I became pregnant with my son. My ob-gyn did a physical exam and diagnosed me with venereal warts because of the numerous bumps, warts as he called them. I argued with him that it was not possible as I could squeeze them and get discharge to come out and that was not the case with warts. Of course, he was the Doctor and knew more than me. He than wanted to perform laser surgery to remove the "warts". We agreed that it would be done after I gave birth. Needless to say I never returned to have it done.
The next Doctor that performed a Pap Smear on me, stated that I needed to keep myself cleaner and to use over the counter acne medicine. How much cleaner?? I was already taking 3 showers a day. I then began my regimen of washing my pubic area and thighs every time I went to the bathroom. 6-10 times a day. Again, all to no avail.
After that instance I began avoiding go to the Doctor's. I hated the way they looked at me. The mis- diagnoises, the inability to get anyone to help.
After my HS had spread to numerous other places on my body. My thighs, labia, breasts, underarms, my stomach where my pants rubbed and buttocks, I began researching on the internet for what the hell this could possibly be. That's when I finally discovered a name for what I had been suffering with for over 20 years. HS!! HS!! Hidradenitis suppurativa. Finally, someone other than me had this, someone else could identify with the hell I had been living. I cried tears of joy at the relief that it was not me, not something that I was doing wrong, not a hygiene issue. I cried that others were suffering too. I cried at the pictures of others that had endured more years and more pain than myself.
I then printed the information I found and took it with me to see my doctor, Selena Roberts, the most compassionate doctor anyone could hope for. As soon as she looked at the information and then at my lesions she diagnosed me with HS. I was the first case she had ever encountered and was not sure how to treat it. She began researching for information as well as myself. We tried a course of antibiotics that lasted for over a year, but to no avail. I then began a course of Turmeric, that I took for over 6 mos, again to no avail.
We, Selena and myself, have admitted defeat and I am now being sent to a Dermatologist.
Fingers crossed and many prayers that he may have an answer.
I first noticed signs of HS when I was a teenager. Of course, I had no idea what it was and hid it for years from everyone. My mother is the type that you did not talk about certain things or body parts - no matter what. I was actually 40 years old before I told my mother about it. That's 26 years of hidden pain. I remember thinking is everyone like this?? Do other people's thighs look like this?? Is there something I am doing wrong?? Do I not keep myself clean enough? A thousand questions and no answers or anyone to discuss it with. And so began my self-medicating and trial and error period.
During this time I tried every acne medicine, cleaner, scrub etc, that hit the market, hoping something would work. I tried peroxide, witch hazel, rubbing alcohol, bleach everything imaginable, all to no avail. I showered 2 and 3 times a day, thinking it was a hygiene issue. Nothing worked.......
The older I became the worse the HS got. At the age of 26, I became pregnant with my son. My ob-gyn did a physical exam and diagnosed me with venereal warts because of the numerous bumps, warts as he called them. I argued with him that it was not possible as I could squeeze them and get discharge to come out and that was not the case with warts. Of course, he was the Doctor and knew more than me. He than wanted to perform laser surgery to remove the "warts". We agreed that it would be done after I gave birth. Needless to say I never returned to have it done.
The next Doctor that performed a Pap Smear on me, stated that I needed to keep myself cleaner and to use over the counter acne medicine. How much cleaner?? I was already taking 3 showers a day. I then began my regimen of washing my pubic area and thighs every time I went to the bathroom. 6-10 times a day. Again, all to no avail.
After that instance I began avoiding go to the Doctor's. I hated the way they looked at me. The mis- diagnoises, the inability to get anyone to help.
After my HS had spread to numerous other places on my body. My thighs, labia, breasts, underarms, my stomach where my pants rubbed and buttocks, I began researching on the internet for what the hell this could possibly be. That's when I finally discovered a name for what I had been suffering with for over 20 years. HS!! HS!! Hidradenitis suppurativa. Finally, someone other than me had this, someone else could identify with the hell I had been living. I cried tears of joy at the relief that it was not me, not something that I was doing wrong, not a hygiene issue. I cried that others were suffering too. I cried at the pictures of others that had endured more years and more pain than myself.
I then printed the information I found and took it with me to see my doctor, Selena Roberts, the most compassionate doctor anyone could hope for. As soon as she looked at the information and then at my lesions she diagnosed me with HS. I was the first case she had ever encountered and was not sure how to treat it. She began researching for information as well as myself. We tried a course of antibiotics that lasted for over a year, but to no avail. I then began a course of Turmeric, that I took for over 6 mos, again to no avail.
We, Selena and myself, have admitted defeat and I am now being sent to a Dermatologist.
Fingers crossed and many prayers that he may have an answer.
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