What is tHiS

HS...Hidradenitis Suppurativa. It sucks! It's painful, embarrassing, can be debilitating and just plain and simply disgusting! It's a condition of the apocrine glands (sweat glands) and skin. There is no cure for this "disease" (I personally hate that word!) It will only worsen over time. There are few treatment options that actually work. What causes HS? Some say it's genetic. I can tell you that it's NOT poor hygiene, it's NOT being overweight (which I am but that's another story). It's NOT caused by smoking. These are things that have been proven. There is NOT however, any proven cause. It's not, typically, a fatal condition. Secondary conditions brought on by HS can be.

HS presents itself as cysts or boils on the skin in the axillary (arm-pit), groin, under the breasts, where ever apocrin glands are, where ever you sweat the most. You will hear me refer to them as "bumpies".  They cause horrible scaring. They cause horrid pain and restrict movement some. My right arm pit is where it started for me. I have had this condition for over 10 years. In that time I have had such bad scaring that it's not only unsightly, it's caused me to not be physically able to completely extend my arm over my head. When I'm having an outbreak the extending is even more limited. I also get bumpies in the southern region of my body. This causes pain when standing, sitting, walking, laying down. There is NO comfortable position. I have to adjust my weight when I sit or stand. Walking is brutal as each and every step sends a pain beyond measure shooting through me. The good news / bad news is one in the same statement: I'm between stage 1 and stage 2. Good news for now because I'm not in as MUCH pain as I will be as it progresses. Bad news because there is no cure, there is no true treatment, it will get worse. It's a scary, depressing thought!

I've posted on facebook about wanting to try different "remedies" that are out there. I've tried a lot of different things, (I'll post about those individually later), and as of now there have been few things that have offered minimal relief.

For me, having HS means that I can't always do the things I want to do. We live in a very hot and sweaty area. Did I mention I can't use antiperspirant? Yep...it's true. I can use regular deodorant, but only if I am not in the midst of an outbreak. So if we run into one another and I avoid you, or back away from you during the conversation please don't take offence. I'm probably having an outbreak and don't want to offend you(r) (nose). 

I smile through the pain as much as I can but there are times when, despite my smiles and laughter, I'm in all out pain. I've gotten used to hiding it. My boys don't need to see it, and I don't want anyone to feel sorry for me.

My main reason for blogging about this is for my own personal research. Like I said, I'm going to post about things I've tried and the results (if any) of those things. I'll be posting about things that are going on in my world around the outbreaks. Since there is no real HS research to speak of in the US, I'll do my own. With any luck I'll be able to find something that will help me and maybe even be able to help someone else in the process.  If you're a survivor of HS, please leave comments as you feel like it. Tell me things that you've tried and how they work for you. Make suggestions.

I would also encourage readers, weather you have HS, you have a friend or family member with HS, or you're just curious about it; to help increase awareness. Maybe we can eventually get some research going. I'm hopeful. I'm tired of being in pain, I'm tired of bumpies, and I'm seriously tired of the crap I've had to put up with through this.  So...I've tried to explain it the best I can. If you have any questions please don't hesitate to ask me. You can either post it as a comment or send me an email or facebook message me. I'll do my best to answer it.

WARNING:
SOMETIMES THE POSTS WILL BE GRAPHIC AND / OR PERSONAL IN NATURE. I'LL MAKE NOTE OF THAT IN THE BEGINNING OF THE POST IF THERE MAY BE INFO YOU WANT TO SKIP. I DON'T WANT TO OFFEND ANYONE BY ANYTHING THAT I POST, BUT THIS AFFECTS MANY MANY ASPECTS OF MY LIFE, AND I WILL PROBABLY TALK ABOUT IT. IT'S A RELEASE THAT I NEED!