Warning: This one might gross you out

This entry is about medical issues.  Specifically, medical issues I’m dealing with.  This post is NOT for the “faint at heart.”  I’m going to be talking about some gross stuff here.  What is important is that if I’d had access to my birth family right from the start, it would not have taken me over 10 years to find out what is happening with my body, why I have to suffer with pain all the time, why my body seems filled with poison and why it won’t go away – ever.

I have a rare chronic disease called Hidradenitis Suppurativa.  Say that three times fast.  I can’t even pronounce it despite a pretty extensive medical background.  It is also known as Acne Inversa.  Wait, before you go “oh, acne, big deal” and click off the page.  Believe me, I wouldn’t be bitching if we were talking about a couple of zits or pimples.

Want to know what Hidradenitis Suppurativa looks like, and why it is not “oh, acne, big deal”?

Go ahead – click here – I dare you.  Or here.  Or here.  How about this?

Does that look like a couple of zits or pimples?  Nor is this just a cosmetic issue – if it was, I’d ignore it.  I’m just not that wrapped up in my appearance. 

What it all boils down to (pun intended) is multiple boil-like inflammations on the breasts, underarms, abdomen, back, thighs, buttocks and pubis which become so inflamed, swollen and filled with poison (pus) they can literally pose a life-threatening risk.  I had one so bad last year it had to be cut out of me.  I spiked a fever to 104.  I had a massive infection flowing through my body, poisoning me slowly, and antibiotics weren’t touching it.  Not to mention the fact that the ER gave me MORPHINE and that didn’t even begin to alleviate the pain.  It wasn’t until they administered a local anesthetic that I was able to be even remotely comfortable.

I get several of these a month – painful, gross, disgusting, poison-filled bumps on my body.  They leak, ruining clothing, sheets, towels, etc.  They sometimes smell – it’s like my body is rotting.  Would you want to have sex with your husband when you had a few of these near some of your “intimate areas”? 

For years, I was too embarrassed to mention them to my doctor.  I thought it had to be a hygiene issue.  Something I was doing “wrong.”  That somehow, I was causing this to happen.  The few times I was forced to seek medical treatment for one which was so severely infected I couldn’t get it to go away, I felt immense shame.  As if I was somehow failing to take care of my body.  That was usually reinforced by the doctors – “bathe more,” or “change your soap,” or “lose weight,” or other comments which laid the entire fault for this at my feet.

Well guess what?  It’s not my fault.  It’s not that I don’t bathe enough, or that I don’t use the right soap, or that I need to lose weight (though that might help reduce occurances because these pop up wherever skin rubs skin, so the fewer places of skin on skin, the better), or anything of the sort.  I will continue to get these my entire life and there’s not a damn thing  I can do about it except finally start treating them pro actively when they do happen – which will hopefully keep it from killing me as a result of an infection raging unchecked through my body.  And maybe I can stop having chunks of skin surgically removed, but with some of these, that is going to be the only option available.

There has been almost NO research done into Hidradenitis Suppurativa in the United States.  Most of the research has been in Europe.  It does seem to be more common in those suffering from hashimotos thyroiditis.  Guess what I was diagnosed with at 18?  However, since there are only a handful of doctors in the US who have become educated about Hidradenitis Suppurativa, finding a doctor who actually knows what they are looking at and knows how to treat it is rare.  Fortunately, there’s a doctor about 35 miles from me who knows all about it. 

Did I mention that these little bastards like to build tunnels (“sinus tracts”) between them, thus spreading them even more?  Yup, invasive fucking disease.

10 years of pain, guilt, shame, fear, ruined clothing and sheets, useless medical treatments, thousands of dollars wasted on useless medicines and soaps.

All of which could possibly have been avoided if I’d been allowed to know my birth family.  Oh, did I mention this is genetic?  Yup, which means it’s a near certainty that others in my family have had to deal with this.  But then, the law says I’m not entitled to know about that.  No, no, better that I die because most doctors don’t know shit about this disease than -gasp– actually consider giving me access to my records and, through them, to those who might have experience and answers for me.

As far as I’m concerned, adoption has proven to be dangerous to my health.  Fuck that shit.  I’m really leaning towards the “outlaw closed adoptions entirely” camp.  I am coming to believe that a closed adoption is entirely rooted in selfishness – whether that be the selfishness of an adoptive family who doesn’t want to have a “spooky first mother intruding” in their lives or the selfishness of a first mother who wants to “do away with a problem.”  Fuck both groups as far as I’m concerned.  And fuck the agencies and legislators who allow this to continue, who fail to encourage openness, who fail to make sure all parties are fully informed.  Your crap is now endangering MY life – unacceptable.   I don’t want to hear arguments about crack-addicted sluts.  (Anyone catch the episode of “Desperate Housewives” where that stereotype was used as a joke?  Not much outcry, was there?) You can maintain a semi-open relationship with them or their family, even if it just means keeping informed about where they are in case your child – you know, the one who is supposed to come FIRST in all of this? – needs information from them.  Quite frankly, I don’t care if it is a hassle for you – tough shit.  You made a choice, now take responsibility for it and move heaven and earth to keep the lines of communication open.  Don’t fuck your child over because of your issues.

Right now I’m sitting here in pain.  It is difficult to type.  I use a laptop.  My hands have to be fairly close together to type.  That means my upper arms press against the sides of my breasts which pushes my breasts against one another which causes pressure on one of the six poison-filled sacks I’m currently trying to battle off.  Since these come up several times a month, I have two options:  deal with the constant pain or risk becoming addicted to something like percocets to kill the pain. 

Lucky me.