Hello, my name is Charlotte and I’m a 37 year old woman who has lived for 25 years with HS disease. It has made me the strong, determined and positive person I am.
This is my story:
I don’t let HS have control. I am a determined person that will not let it get to me. There could be a lot worse things in life. I try to stay very positive, but it’s hard some times. If I had a redo on life would I take it though? Of course!
I was 12 when I started getting these abscesses, but I was always told they were nothing major. My mom and dad use to sit me down and use a sterile needle to break them, it was very painful. It was not till I went to my dermatologist that I was diagnosed properly [another Doctor had said I had Job Syndrome].
I wish people just being diagnosed could receive the right treatment for them from the get go. Most HS-ers need to try a pile of different meds that just ends up getting them discouraged. I personally have tried many different kinds, like Remicade, but they all worked for a bit before stopping.
PICC lines are something else that I have had. It’s a permanent IV inserted into my arm so I could give my own meds at home. I use to have them delivered every week and every day for an hour I would sit down and pump them in. I had this line in for 9 to 10 months each time.
Life was a bit difficult, but I had a loving boyfriend that did not mind helping me out. He would saran wrap my arm every day so I could take a shower, and would help me break bumps and clean them up. With the pic line in I could not lift anything over 5 pounds and sometimes it would slide out and I would have to go to the hospital again and get it weaved into my arm again. A nurse would come in every 3 days to make sure the line was clean and the area not infected. She would also have to change out the cap.
Dr. Gulliver wanted to try the one I’m currently on, called Stelara, and it’s working very well for me!
Once, when I was going to my dermatologist for my Stelara injection, I had a huge abscess on my chest. Even though I knew I would not be able to get it, I went anyways. Sure enough, he looked at it and said”be right back”. He returned 5 minutes later to say I had to go to the emergency room and that there’s a surgeon waiting for me to get rid of it.
When I got there, they admitted me right away and I had emergency surgery done at midnight. I was in the hospital for 3 days, and was off work for 16 weeks after.
The amount of pain I feel from HS is different every day. For the most part, I’m in pain all the time but don’t realize it. Instead of the pain, I try very hard to focus on my life. That can become a challenge when it comes to working though.
I’m a home care worker, which means I look after people who need and depend on me for a better quality of life. I work full time, occasionally working 60 to 80 hours a week. Sometimes I have to work in pain, but I don’t let it get to me.
Rarely will I call in sick, but when I do; my company knows that I really am ill. I have a strong work ethic and feel guilty if I do call in, even though my work completely understands. They have no problem giving me time off when I need it.
I had another big surgery last March 2nd, 2015 when I had the sweat glands in my armpit removed. I was supposed to be hospitalized for 3 to 4 days, but ended up staying 13. The skin graft they gave me had a 95% chance of taking, but guess what? It did not work on me. I ended up having my wound left completely open because it had to heal from the inside out, leaving me off work again for 16 weeks.
The opening that was left was about the size of your hand, but I am happy to say that my armpit healed and I no longer get abscesses there at all! It was a long and hard road but I did it and would even do it again. As a matter of fact I’m currently looking at getting my other arm done. I’ve even found there was an extra benefit to having no arm pit; I don’t have to shave it anymore so I save money on shaving cream and razors.
I believe all the choices I have made brought me to this point in my life; even if I did not have HS I would still be here in this moment.