Wednesday, April 10, 2013

The Ugly Disease - Hidradenitis

I finally went to the doctor. I had an open lesion on my inner thigh and one on my rear end. None in the armpits for once. I've had so many there that my armpits and the skin just below are a mass of scars and pitted skin. Not to mention the blackheads that no amount of scrubbing gets rid of. My inner thighs are almost as bad. Friction from walking generally makes those boils burst quicker so I don't have to deal with it as long. I also have some light scarring under my breasts from some popping up there ocasscionally as well.

This disease, what it does to me, is not new. It's just newly diagnosed.

I didn't know what it was for years. It started slow. I had a blister or something under my arm. Oh well, my bra just rubbed me wrong. It healed. Then I'd get these boils that felt like there were little peas under my skin. Oh well, I need to lose weight so my skin won't rub together like that. Bring on the baby powder until I realized I couldn't use it at night without waking up with a sinus headache from breathing it in. No sleeveless shirts and must have a skirt on the swimsuit. Whatever you do you mustn't raise your arms in public.

It started getting worse. It got to the point that I pretty much had an open wound at all times.

I still didn't go to the doctor.

Then I had a conversation one night at the bar. Chatting with a friend, she told me about her skin condition that she was going to have to have surgery for. Hidradenitis Suppurativa. It all clicked. I asked lots more questions and did some online research. Then I went on Google and did an image search. Trust me. It is not pretty. But one of the moderate cases looked exactly like what I had going on. She gave me a bunch of helpful hints on using special cleanser and bodywash and of course told me to get to the doctor.

I still didn't go to the doctor for 2 more years.



Fear of embarassment. It's ugly and raw and there is puss and blood. It's gross.

Fear of it being true. Hidradenitis is incurable. Treatable but incurable. If I went to the doctor and it was true then I would have a "pre-existing condition" What if I switched jobs? Would I be covered? What if I have to have surgery? I'm too young to have a disease I have to deal with for life.

Fear of the unknown.  So much of what I read about it was vague. They don't know what causes it. They don't have a solid treatment plan. Worse case scenario is they would have to remove sections of skin that are too infected and scarred to be saved.

Fear of worse down the road. Hidradenitis is often paired with some other fun diseases. Crohn's, Hashimoto's thyroidosis, and a few other immune disorders.

So what finally made me go to the dermatologist? 

My butt. I'd never had a boil there before. It was spreading.

No more excuses. No more delays. No more giving in to the fear.

March 21, 2013- I went to my appointment.

I have Hidradenitis. It's confirmed. No samples, no cultures were needed.
Since I haven't had any treatment ever for this, they started me on a 10 week course of antibiotics, two topical creams, and a high dosage of Zinc. They hoped that it would shock it into remission for awhile. Remission. That's a scary word. It means they hope to buy me some time away from the pain and infection. But that it'll probably come back. Just wait and see.

There is more of this tale to tell but it'll have to wait for another day.

If you want more info on what I'm dealing with, this link is a decent one to check.

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