How Rare is Rare?

When every medical diagnosis I have is considered rare, I want to know how rare is rare? Ehlers-Danlos Syndrome, Raynaud’s Syndrome, Celiac Sprue… the entire list is much longer than that and as of yesterday has a new contender. I found myself laughing when my doctor said, “Well, It is rare… but there is a name for the skin condition you have.”

I wasn’t even aware I had a skin condition. I always thought I was just dirtier than the other girls, and that my skin just sucked. I used to shower up to six times a day, though that made little to no difference in the quality of skin. I have lesions, blisters, boils and abscesses constantly. I thought this was normal, and that everyone got them at least sometimes. The name of this condition? Hidradenitis Supprativa. This condition is considered an actual disability according to the government.

I know why personally. For one, there are days when I can barely move my arms and walking, beyond the agony of the broken bones and hip issues I already have can be made worse by the damaged skin in my groin. Psychologically some of my most depressive days are the result of being infected, sweaty, and often worrying over spreading infection to others. Now that I know the name of the disease and have some knowledge I am aware that I am not going to infect anyone with it. It is rare. It is genetic.

I want to know what the mortality rate is with this disease. Some might say zero but I remember just wanting to die when I had my first really bad abscess. I was at work, and my nice shirt was ruined by the pus and blood because the boil burst before my break. I hid more shame, and beyond wanting to hide, run, or just cut my breasts off I considered killing myself. The never ending work of trying to get everything done, trying to be clean enough? That day I could not fathom selling anything, hefting the heavy boxes of dishes, and what about the smell?

Infection is not a clean smell. Neither is sweat. Being a teenager I never felt pretty. It took me becoming an adult to start seeing past the little things. Still, attending a friend’s wedding my thoughts were how to make certain my formal wear would not retain the odor of my sweat, on how to make sure that no one could tell. I am now entering the mourning stage of a new diagnosis. I mourn the times when I cut out my own abscesses. I did that last week. I have never once considered seeing a doctor when my breasts split open. It happens so often, that it is normal to me to self care.

This brings me to another point where I was accused of Self Mutilation as a teenager. Beyond having actual issues with that due to the severity of my depression, there were times when I was told I had to have cut myself in order for my body to be so gory. I was sent to a therapist for it. My body has scars, open wounds that have been around longer than some of my siblings, and my mind has been shaped by this disease.

The other effect of more rare diseases that are incurable is this. Can I escape being disabled? How inevitable is it for some of us to wind up with our bodies breaking us down? My body is out to get me. How can I function like this? What is next? Is breathing going to become a forbidden act because of something rare and genetic?

How can something like this really be rare too? Some of the research I did today indicates it is related to acne, though it is not acne. What if it is not as rare as all that? What if more people have it, undiagnosed and are losing out on their quality of life?

At this time there is no treatment. I will be updating my disabilities page, and I will find ways to help others like me. The more people who know, the more the odds of a treatment being created increase. I currently treat the breast area with a steroid cream, though, this is dangerous to do for your genitalia, and therefore half of my effected area is untreatable.

There is nothing that relieves the pressure, beyond bursting the abscesses. There is nothing that relieves the burning sensation, and there is nothing I can use to cut down on the sweat. Sometimes saline solution helps to dry me out, but, there is nothing that has a permanent or even reliable effect. Antibiotics have helped some, during the worst part of the cycle, yet not for me.

I am tired of being rare. I am tired of waking up in the middle of the night and squeezing puss out of my breasts. I am tired of denying myself sex, when I truly want it, because I fear being disgusting or the pain is too great. Sex is important to most people, me included, but my body is attacking itself and eventually my genetalia may be scarred so deeply that I can no longer function sexually.

In a long term relationship, this has an effect. It is not positive. As a woman, I have had a lot of challenges facing my femininity, partly because of this disease, but this adds another facet. If I cannot pleasure my partner, and vice versa, what are the long term side effects psychologically?

I am rare. I am one of the rarest people you will ever meet. My pain is rare. My skin is rare. My eyes and hair, and my entire body is a rare example of surviving despite it all. So is yours. So is the man on the street corner in the business suit. So is the single mother. Rare is not rare at all. For every diagnosis of a rare condition, countless others are never discovered. Statistics are faulty, when not every case is discovered, so how can we truly understand rare?

Info Links on Hidradenitis Supprativa:

http://www.hs-foundation.org

http://www.hs-usa.org

Why You Can Never Thank Your Caregiver Enough…

Once upon a time, in a land not so far from here, when my legs worked without pain and I could dance I did not need any help in the world. I was blissfully unaware of how much harder things could be. Now, when I am hungry I have to debate if I should risk trying to microwave that bag of popped corn, or if I should hit the buzzer (obtained via Freecycle) and ask Ye Olde Caregiver to feed me. Usually it is the latter. The apartment is not accessible and that means hauling myself out of bed and to the kitchen. By the time popped corn is ready, I am out cold.

Yesterday he wasn’t here and being that I have yet to really buy groceries in the new apartment, I had to fend for myself. It has been six months since that was the case, and at first I was stumped. I couldn’t cook, standing and cooking is too dangerous and the chairs make me burn my arms up, which leads down the road of scars and infection.  In my fridge there were a total of three options. Beans, a rare blend with cheese and some secret but gluten free sauce courtesy of Del Taco, eggs, and a lot of drinks. So I piled the beans on a paper plate, put it in the microwave and had myself a feast.

That got me thinking, and first I asked permission before writing about him on the blog, that my caregiver takes a lot of crap, just by default. When we go out he fends for me, when I cannot reach something or if I am so low on energy that I do not see the predators coming. he is a shoulder to cry on when my pain meds fail to make it all better. He fights for me, he cooks for me, he moves me around the world, and he even helps me get in and out of the shower.

Without him, I would likely be trapped in an abusive environment. Someday I will list all of the abuses I have dealt with, but, this is a joy. Yes he is a paid caregiver, yet he works four times as much as he gets paid for. Not only does the state refuse to offer overtime, but, I cannot seem to get an extension on his hours. He deserves to get paid, as he does duties not listed by most. He even cleans out the dreaded litterbox.

Some people might wonder why a woman with such a dark past would want a male caregiver. I initially was resistant but he is the right man for the job. Not only can I trust him but my personality detecting cats both adore him as well. I have never felt endangered by him, and that is not true of anyone else in my life. If you have a caregiver or a service animal, how much do they do for you that goes unseen?

Sometimes when I am napping and kick the covers off, he tucks me back in without waking me. He feeds my cats, he even helps them get dressed when my hands are too swollen to work the velcro. He finds my missing pills when the faeries hide them (or I lose them). He does anything I ask of him, including running around town picking up furniture via freecycle. Today he has picked up a couch, a bookshelf, and a desk. I now have actual furniture, which he will dust. Yesterday he moved a TV into my room, cleaned up cat barf, and did laundry. Plus his daily chores which include three meals a day, two meals for the cats, and anything else I can dream up.

He even invents things for me. He is a technological wiz, and he enjoys making things. His hobbies include making games, that’s right, video games and woodworking. I have yet to run into anything he cannot fix or improve. He is one of the dearest people I know.

So thank you to all caregivers. Without you the world would be a dreadful place full of hunger, pain, and without the light you bring. May you never be taken for granted.

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