God is an alien and put alien babies under my skin – Rare medical condition woes

God is frackin with my debut of becoming a Vampire Ninja Kitty

I really think that God looked at my life, saw it was too easy 10 something years ago, and decided to press a button “just to see what happens”. Some people just want to watch the world burn, but God wants to see if he can drive you as insane as I believe he is.

So today was my birthday. Instead of enjoying that I had 2 huge problemos: my monster teen’s meeting with juvenile services, and a rare disease that showed up in my life about 10 years ago.

For the MT: he received some hours of community service and an essay for punishment. I told him he should be thanking the crazy man upstairs because that would’ve been waaaay worse. The rare disease though, I can blame no one but God and the faulty body he gave me.

Hidradenitis Suppurativa. Sounds weird and foreign and disgusting. Weird it is. Disgusting… Well, you google that and see some pictures and tell me what YOU think. Don’t worry, I’ll wait for the dry heaves. We good? Ok.

For those not brave, pffft, HS is a weird disease that doctors still are trying to figure out. You get cysts, or abscesses, in folds of your skin that are painful and start to swell. They can be the size of a dime, or the size of a baseball. There’s no tried and true treatment for it, as I’ve been on almost every antibiotic known to the US. Stress, heat, and weight can play a factor. I get these bundles of hell every couple of months. Sometimes a flare can be just a small knot under my arm, or behind my ear. Other times I may have 4 all in the creases of my groin. Seriously… There’s no telling how many doctors around the world that have seen my giggles and bits.

I don’t have as bad a case as others. Many friends of mine that I’ve met through support groups have it so bad that they’ve had multiple skin grafts from the skin getting thin after flares have ravaged an area. I was close to it at one point, about to lose half of a lip – not on my face. Luckily the skin thickened to where it stopped tearing constantly.

The problem as a whole is the new doctors who seem to lose their sh*t… Excuse me… Seem to lose their knowledge of how things work when an HS sufferer comes in. I was told to bathe more today. Dude, I take at least 2 showers a day. I’m sitting in the frackin bathtub right now as I write! HS is not a hygiene issue! I was treated today like I was overreacting to a needle going into the area between my front bits and my back bits. I dare any of you to be calm cool and collected when getting first a needle shoved in there, and then, because lidocaine NEVER numbs the whole area, feel as your skin there is cut open. And then packed with gauze so it can heal from the inside of. Oh, and that gauze that was stuffed into that gaping hole in your skin, it has to be changed daily. I’ve had this happen so many times that I’ve lost count. And let’s not talk about the idiot nurse who talked of removing this cyst being a cure. Chick, this disease is like Freddy and Jason, it ALWAYS comes back.

Of course, other than the docs and a few close friends, you don’t want to talk about a medical condition like this. Its embarrassing! It’s also embarrassing to limp around and people constantly asking you what’s wrong while you’re just trying to keep from “rubbing the wrong way”. Its depressing, to know that this disease may never end. That at times, when you have a significant other, you can’t be intimate with them because either you’re oozing or just in pain.

But you deal. Because for some reason God wants to frack with you. And even through the pain and tears, you know you are strong. Heck, I’m going into work tomorrow bright and early. I just may stand up all day.

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One thought on “God is an alien and put alien babies under my skin – Rare medical condition woes

  1. Pingback: Tales of Growing Up: The Wacky Tobacky Trials and Why I Can Never Smoke Even When Legal | dimensionthe5th

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