If you have read my blog, you know most of my coming out story. Today is National Coming Out Day and I want to write about a different kind of coming out. It isn't about my sexuality or my gender expression, but it is something very personal to me and in some ways even more private than my sexuality. This morning I posted on Facebook that I hurt and that I was having a pretty awful flare up. I had a couple of folks ask me about it. (Which was not my intention, I really just needed support in that moment.) I have been thinking about it all day and decided that I would write a blog post about it and let you all in on what is going on.
It all started long, long ago. In high school I would get large boil like sores on my face. (Let me tell ya, for someone who was already feeling out of place, that little addition was priceless!) They would come and go, I was put on acne medication and told to keep my face clean. I did and they persisted. I chalked it up to teenage hormones and was the target of plenty of harassment because of them. Eventually they stopped forming on my face, but they were not forgotten. My cheeks bear the scars their presence. For years after high school I would get little isolated sores on my legs, groin, and occasionally in my armpit. Again I figured it was just acne and tried to keep things as clean as possible, hoping they would just go away. Sometimes they would get big, like in high school, come to a head and pop. I didn't go to a doctor about them because well...who really wants to draw attention to sores in your nether regions? Plus they didn't really hurt most of the time, so I figured they were just a part of my life.
Over the years I have had a couple of scares with the sores. I had one form on my breast. (For someone with a family history of breast cancer, finding a lump is a little scary.) It turned out to be nothing, but when I had another one form in my armpit, I again got a little worried. And when is grew to be the length of a baby carrot and extremely painful I decided to go to my doctor. I did a little research before my appointment (I don't suggest self diagnosing yourself, but a little research to open the conversation up with you doc is perfectly reasonable.) I came prepared with a print out of what I thought it was, really truly hoping I was wrong and that my doc would say, "Oh no, that's not it, take this pill and it will all be better." Alas, that was not the case, instead, she took one look at the sore asked me a couple of questions and said, you have Hidradenitis suppurativa (HS). My heart sunk because the paper folded neatly in my pocket was all about HS and I knew there was no cure. She went on to say she had seen one other case, a woman who had come to her to get a doctor's finding for a disability claim. Her HS had progressed to a point where she was in chronic pain and unable to work. I wanted to cry.
So what is HS? The long and the short of it is this, it is a skin disease. (No it is not contagious, thank god. I wouldn't wish this on anyone!) It generally appears in regions of the body where skin touches skin, like the arm pits, groin and bum. It also forms under bra and underwear lines. It can also form in other places, like the face or near hair follicles. Sweat glands get blocked and form lumps, sometimes they hurt, generally they really hurt. If they remain blocked fluid can form behind them and can become infected and give the appearance of being a boil. When they become inflamed is when the pain really starts for me. The one in my armpit got so bad I could not put my arm down. I am in stage I, thankfully. My sores are isolated and have not formed tracts below the skin. In Stage II tunnels form between sores and it spreads across a large area. Stage III is beyond my comprehension of pain and I pray that I never, ever, ever, progress that far.
Why am I sharing this with you? The first reason, I need your support. I am going gluten free in an effort to reduce my symptoms and hopefully reduce the impact on my life. I am not making this change lightly and it has caused a fair amount of frustration and tears. I love sammiches, french toast, and a beautiful crusty baguette every now and again...oh and desserts, don't get me started on pastries, pies, and cakes on special occasions. But I also love not being in pain, I love being able to sit in a car and not want to cry because it hurts to sit from Palouse to Moscow. (20 Minutes) I have done some experimenting with food and research on what others have tried to combat their symptoms and eliminating gluten has been a major factor in relief. And right now, I am looking forward to a little relief. There may be other things that I try, but for now gluten is leaving my life.
The other reason I wanted to share is because I don't want to hide this anymore. HS is a disease that most people want to hide. Really I would rather not be talking about this, I would rather not have it, but I do, so I will help educate and reach out to others that may have it. There is little research being done and there is no cure, it is does not have big bucks coming in to study it. Most of the time doctors throw drugs at the problem and hope it goes away. But HS doesn't go away with pills, sometimes it flares bigger and badder, sometimes the symptoms are reduced to bearable. I don't know about you, but living a "bearable" life is not my idea of awesome. I am going to do what I can to live a full, awesome, pain-free life. If you have HS, HS like symptoms, or know someone who does, know that you are not alone. I would love to connect with you and we can walk down this path together.
I am sparing you the gory details of this disease, if you want to see photos or know more about the experiences there are plenty of sites out there for you to read. If you want to ask questions about how it has progressed for me, or you want a little more detail, I will happily share it with you via email. I wrote this to reach out, to connect, and to continue to live an open and honest life. This is not intended to be a "poor Mo" post. HS is a part of who I am, I am learning what it means for me, and how I can control it. It does not define me. I will not allow it to hold me back from the person I want to be and the amazing things I have ahead of me.
