Let me introduce myself. My name is Tammy and I live in Delaware. I have had HS for approx. 10 years. I have only been diagnosed for about 5 years now. I am a mother of three children, a wife, and a Stage 3 sufferer. I will have to admit, for the longest time, my embarrassment of this condition kept from being active in voicing and trying to find a cure. I was always told that basically this is a self inflicted condition due to poor hygiene habits and becoming over weight. I now know different and I will do everything in my power to help all of us that are suffering.
HS is a disabling condition and is considered disabling through Social Security. If you have it in your axillae (underarm) or perineum (groin area), and have had surgery and it still has come back, then you qualify. So if this sounds like you and you are battling with HS and your ability to work with it, apply now. You can find social security info at http://www.ssa.gov/disability/professionals
/bluebook/AdultListings.htm
This is the opening summary of my bio book and will also be one of the short stories in the book of chronicles. Please send me your story and permission to put it in the book of chronicles. Maybe if the doctors could see how this condition really affects us, maybe we could get more compassionate-educated doctors to treat our HS.
Have you ever felt like you are watching your life through a TV screen. I do, everyday. I have three babies 10, 7, and 2. Three of the most perfect people you could ever meet. My world began the day they were born, and ended the day I had to sit back and watch other people with them. I have a condition called Hidradenitis. I know, you probably never heard of it. I know I didn't until 1999. It scared me, but it was only in my stomach. It hurt bad, but I had a good doctor and he was going to take care of me. He turned to me seeing my fear, smiled and said, "It will be alright, nobody has ever died of it." I went home feeling relieved. I had an operation and everything was going to be okay. I always try to think positively. At this time, I only had my son and my middle daughter. She was a baby at the time. This condition slowed me down, I was putting weight on left and right and couldn't figure out why. But it was not going to get me. Well, I woke up one morning with blood coming from my breast. I screamed and my husband ran me to the hospital. I just knew it was cancer. The doctors were worried, I could see it all over their face. They didn't know what it was. They were testing me for everything. At one point a doctor came in and said we found an elevated chemical that usually indicates brain tumor. My heart broke, my grandmother died of a brain tumor. He said,"We still have to run more tests. I know you are in your young twenties, but we would like to do a mammogram." I was petrified. When all of the tests came back, the doctor told me the blood was coming from my glands in my breast. It was Hidradenitis. I told them no it can't be, I was cured. I had an operation. They then told me that there is no such cure that operations only prolong the symptoms. I had no idea that was the day I died. Lesions were sprouting out all over my body. I would struggle to get up in the morning, and go to work, but by noon, I smelled, not like body odor, but like rotting flesh. My boss would pull me aside, and tell me they were writing me up for hygiene issues. How humiliating. So I took a job close to home. At lunch I would go home and scrub, not eat, scrub. Believe it or not this fat lady eats very little. It didn't matter. It was there, the stench. But I am a stock broker. I am intelligent. I am good mom who coaches little league. Not anymore. I am a person who died inside from Hidradenitis. I am now home watching other people play with my children outside, swimming, coaching little league, and rolling on the floor with my baby. Do you know how hard it is not to cry in front of your child who is begging you to hop in your pool. My thought is ouch, chlorine, heat from the sun. I can't! Mommy, why aren't you coming too the beach with us. Mommy why can't you come to my game. Mommy, play with me. I can't. I can't I can't. Mommy loves you so much, but I hurt. The pain is blinding. Forgive me. I can't. I have to watch someone else with my babies from a TV screen, a window. It hurts. Not only on the outside, but the inside too.
One of my latest operations was in 2003, it was under my left arm, I had home IV in the other arm and HS under that arm too. It was the most trying time of my life. It was the holidays, and I could barely do anything. I had daily visits from home nurses and several visits to the hospital. I have deloped an immunity to alot of antibiotics, so it takes more and more heavy duty antiobiotics to kill the infection. Then I develop horrific yeast infections from the moisture of the draining and the yeast compound in the antibiotics. That usually lands me in the hospital too. There are so many compications that HS causes. Esspecially if you are like me and your incisions open up immediately after surgeries.
Thank you for taking the time to read my story. If you need help with your HS, please don't hesitate to contact me.
