I grew up on a farm in South Central Tennessee with my Mom, Dad, and my sister Beverly. I had a very exciting childhood living on a farm, working on a farm, and led a normal childs life. I always helped my dad in the fields and always was on the tractor with him, I would sit for awhile, get off and run for miles behind him up and down the rows of whatever field we were in, and had enough energy to conquer the world. Went from 5:00 in the morning until 9:00 or 10:00 at night. All of this started changing when I hit puberty, and I believe my body aged 10 years at that time, and hasn't stopped.
All through my grade school and high school years the very high part of my bottom would hurt when I sat in the chairs at school. I came home complaining everyday. Since nothing could be seen and you didn't go to the Doctor unless blood was pouring, I continued to hurt with this until 1979. I woke up one morning and went to get in the shower, and as I stepped over the edge of the tub I thought someone had shot me in my butt. I felt, and I had a goose egg right in the top point of my behind where your tailbone is. It was a Pilonidal Cyst . I had it surgically removed and that is no vacation but he went down below the tailbone and at least 2 inches out on each side and cleaned it out good. I was left open with tons of packing for it to heal from the inside out.
Three months later in 1979 I awoke to painful underarms. Upon arising I finally lifted my arms and I had these huge Knots (my term for them) under both arms. I went to the Doctor running and he tried to count them, and got to 110 and that was enough for me. He said he didn't know what it was, but to not let anyone ever do surgery on me or they would end up reaming me out like an old hog, and from what he had seen it always came back or in another place. And that has stuck with me until this day. (NO--HS surgery for this girl), unless life or death. He gave me antibiotics told me to go home and rest and said that was all he could do.
For the next 20 years I went to numerous doctors of all kinds searching for a name of what I had, help of any kind for what I had, an explanation of why I always felt so bad, felt like I had the flu, itched, ran fevers, wanted to sleep, and the list goes on. I was called lazy, a good for nothing person, sorry, and other words I wouldn't want to mention here. I was talked about and called names by my family, friends, co-workers, and most of all little words or gestures by my husband. I worked everyday, five and a half days a week, and sometimes I had good days, while battling between 3 to 30 HS Aliens all the size of a quarter or bigger. At this time they were under my arms and under my breasts, and working and taking care of my daughter was all that I could accomplish. It wasn't laziness. How many nights and days I have cried because I didn't feel like doing anything else. Silently, Alone, and Hiding with a disease that no one else had and no one around me knew I had except my close family. My heart carries many scars from the words that were said that can't be unsaid, looks that were given to be mean and hateful, and new scars are added each year even now from people who don't know who I am. Over the years my HS spread to the lower abdomen, ears, groin, buttocks, and all areas in between there, legs, and back of hair line, and one on my face.
In 1998 my son wanted a computer from Santa Clause, and in the spring of 1999 I went online. The very first search I did was for knots, lumps, bumps, aliens, anything of the skin in hopes to find my disease. The very first website I went to I read for a little while and on there it said, "What you think may be boils, may in fact be HS, check this site out" And there it was Hidradenitis Suppurativa. I had spent many dollars, on many doctors, and not one of them had a clue of what I had. I went online and found what I had in 20 minutes. I was to see a new doctor that week and I printed off all of the info that website had to offer and took it with me, I was ready for the doctor when he came in. He asked me what was wrong, and I lifted up my blouse and said "I was wanting to see if you thought this could be" and before I could get it out of my mouth he said Hidradenitis Suppurativa. This Doctor was from Canada and he had seen it in a teaching hospital up there. I now had a name, but he told me there was no cure, and that there wasn't anything to do for it except antibiotics and surgery. Well surgery was out, and I had already taken so many antibiotics that my body was immune to them, so he sent me to a dermatologist, the derm couldn't help either.
This disease is a trial and error disease, we have to try it and see if it works. And we have to be our own advocate, teaching the Doctors about our disease. What works for one of us may not work for another.
I searched for 20 years for a name for my disease with Doctors that were professionals in their field, I found my disease in 20 minutes on the net. I found also on the net that there are thousands of us and I am not alone, and I will never have to be alone again.
bravenet.com