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By Gary Llama
I'm going to talk about something here that I rarely talk about. It's a disease I suffer from, and apparently it's pretty common, about 1 percent of the population, actually higher than Multiple Sclerosis, but you may have never heard of it. Why? Because people whom have it generally do not like to talk it. Partly because it's embarrasing, and partly because once you are done dealing with a flare up of it, you do not want this disease to take up any more of your time.
There are a variety of names for the disease: Verneuil’s disease, Acne inversa, but the technical term is Hidradenitis suppurativa. It's chronic, hereditary, and debilitating. And while there are steps to treat it, there is no cure.
The disease works in the sweat glands around hair follicles. They clog up, and begin to abscess. The abscess is essentially a pimple, but much much larger, and instead of coming up through the skin, goes inside the skin. Hence the name Acne inversa.
I first discovered the disease the day after a 12-hour continuous drive back from Chicago in 2008. I felt a little hard spot on my butt check. "Odd", I thought. And over the next eight to 10 days, I really can't remember the exact length of time, it grew into the most horrible thing I had ever experienced. I sat in the ER on that throbbing, painful abscess for five hours waiting to be admitted to find what in the hell was going on. I had never experienced anything like it. Upon being finally taken back, I found it burst when I moved my leg to hop on to the exam room table. They sat me there for an hour to let it drain, then gave me morphine, and proceeded to give me 12 antibiotic shots in the area. It was then packed with gauze and I was told I would have to change the packing every day. They assigned me a nurse to visit me and change it, but on weekends I was on my own. Luckily, a friend at my school knew a person at the free clinic and referred me there to have the dressing changed.
I think back to this time with a smile, for two reasons: 1. That my wounds were being packed, which is painful, but it's also good care. And 2, the horror of my roomate's face when I asked him to help me change it.
The only thing I took solace in was that this would never ever happen again.
And then two months later, another one happened. And a month or so after that, another. And it kept like that for about a year, then went to one every three months and stayed like that for a while.
But through this, I had no idea what the disease was. Doctors told me it may be MRSA, and so treated it as such, but it still came back. And every culture they took to check for infection came back negative for anything. So no bacteria, but still it acts like it's infected. Some doctors said I should take more regular baths, which was laughable if you know me, 'cause I'm pretty damn clean. But still no clue what it was.
Then one day I went to a new doctor, and poof!, I had a diagnosis. I asked her how to treat it. She said there was no prevention of it, or cure, but that surgery could be arranged to remove the area that was effected. However, she told me I should wait until it's absolutely necessary, as these abscesses tend to come back, even after the skin is removed. So one would wonder why even bothering with the surgery? Well, as the area never fully heals, leaving a bit of raised skin, it can fall prey to Squamous-cell carcinoma, and that can kill you.
So why am I writing about this today? Because I am in the 'Care' stage of a 'flare' up right now. Here is how it progressed.
Day 1: Felt a hard spot on buttock. Fuck. No pain.
Day 2: Hard spot increasing in size, about size of quarter. Fuck. Feels numb.
Day 3. Still increasing in size, now about size of silver dollar. Fuck. Pretty painful.
Day 4. Now size is about 1.5" by 1.5 to 2" long. Fuck. Sleeping is now difficult as it's throbbing. Start popping Ibuprofen.
Day 5. Still growing. Horrible Pain. Sleeping very difficult. Walking with a limp. Spouse having to help me around house. Size is now around 1.5-2" wide x 2.5-3.5" long on average, as best as I can tell. If you happen to go to an ER during this time, they will tell you 'It's coming along good' and send you home. You have to let it go its course.
Day 6. Wake up at 6:30 a.m. to find it has opened and while the pain is now gone, replaced with a rawness, find myself soaked in blood. Spend time cleaning wound, lay on floor to avoid passing out from blood loss, then put on pair of pants that I don't care about. Spouse gets me things I need from store and cleans blood off bathroom floor and bed as I can't stand more than a minute before lightheaded, or pain of standing from wound. Sitting still hurts but not as bad. Change pants and bandages a few times.
And from there on, it's a one to two time daily bandage change. Use the bathroom? Change it again. Changing bandage involves washing area with soap, then putting alcohol on wound. I'm not the type to pass out from pain, but I've actually almost passed out, full tunnel vision, static in ears, from just putting on the alcohol. After about five to six days, you don't need to put a bandage on it. But it never fully heals. And sometimes, about a month after, it will fill up with blood and, without much pain at all, decide to open up randomly, wherever you may be. Sitting on a nice sofa? It's doesn't care. Walking into 7-11? No better time to open.
Dealing with this has really forced me to question how I spend my time when I'm not dealing with it, which can be a pretty positive thing. But ultimately, I wish I had never heard of it.
If you have this, or know someone who does, my heart goes out to you. I once overheard a fellow patient in the ER be told of his diagnosis with this, and my heart sank, not at the extremity of the pain he will feel, but in how much work will be involved in his life from this point on, nursing and caring for, something that, if taken care of will not kill you, but will really never get better.
#Illness #Sickness #Medical #PersonalEssay #Surgery #Disease