Heartened

The whole kit & doodle!

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.

 

 

 

 

 

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March 15, 2006 - Posted by | General

4 Comments »

  1. Hi. I have the same disease. Yes it is painful, disgusting, and yes I have had to have them cut out as well. My general surgeon prescribed some gel clindamycin phosphate gel, 1%, that seems to be helping to control the outburts and also prevent some new ones from coming. I have a constant supply of it. My brother has the same disorder and when he gets back from Iraq he is really flared up. Anyway, I feel for you as well as being an adoptee, although both my birth parents died and my brother and sister were adopted with me. My family got as much information as they could and now we just look to each other for answers. Hang in there

    Comment by Bee | March 16, 2006 | Reply

  2. hi, it’s me again. did you check out the rod mckuen website i posted?

    that disease looks like it would be awfully painful and difficult to live with even if it weren’t painful.

    i agree that under most circumstances adoptions should not be closed. (there are some times that being in contact with the birth family could be a danger to the child. there really are some crazy folks in the world.) at the very least, the birth parents should be required to allow medical records to be forwarded to the adoptive family.

    before i was in contact with my daughter, i worried that she would never know her medical history. heart disease runs rampant in my family. (all of my ancestors, but one, have died from heart attack or stroke.) my father died at 47 from his third heart attack. i had a heart attack when i was 36 years old. had 5 bypasses, needed 6, but they didn’t want to open my other leg, in case i need those blood vessels later. 9 years later, one of the bypasses needed a stent.

    anytime i posted an ISO message, i always wrote that she should take care of her heart so that even if she didn’t ever want to know me, she would know that much of her medical history. small blood vessels, along with low good cholesterol is a dangerous combination. it is also hereditary.

    Comment by Anonymous | March 16, 2006 | Reply

  3. Incredibile Journey you have been on! sounds like you have been on an insande journey! I too have Hidradenitis and I want you to know it is not hopeless. I have wend from a Stage 3 ti a stage 1, Feel free to call me at the HS USA help and information line anytime at 928-279-0833/ There is hope out there for it. There are spme great studies going on out there for youl I dont konow our location or what you have been through, but wanted you to know it isn’t hopeless. ‘there is even an HS clinic in place in the HS now. If you have any questions, please call me, I will more then gladly do all I can to point you in the right direction. Dont hold back, thats what I am there for, oh, we also have a genetic study being done on it at this time. again, feel free to ask questions and call anyime.l I have free long distance for this fromn the organization. Peace, Hugs, Prayers and Pain Free days, Tammie Ferris
    928-279-0833 HS USA Help and Info line

    Comment by Tammie Ferris | May 13, 2006 | Reply

  4. Heartened….

    I had no idea that this condition exists and appreciate you sharing this with us.

    As I read your story and how you suffered and thought it was something you did wrong, I felt so sad, to know that such a huge piece of your medical past was unknown to you. I thought of what it would have been like to grow up knowing about this condition and having communication with others in your genetic family that have the same condition as you. I am sure, it would have made a bad situation, somehow easier to deal with to know you are not alone and that you are not at fault for this condition. To have others around to tell you what helps or what aggravates it. To give you moral support.

    I’m so sorry you suffered so long. It’s stories like yours and others I have read on line that makes me feel good about open adoption. I don’t say that word very often because it seems everyone has an opinion as to why it doesn’t work out but I know in my heart, to be able to give my children their biolgocial roots and still offer them the wings in which they would be able to take care of themselves in this world, gives me more pleasure then any fear any forum can brew in me. It gives me peace to know that my children know exactly who them came from and why.

    Thank you for sharing this with us and bring to light how much you suffered and how you felt knowing about this at a younger age could have helped you.

    Thank you for your honesty!

    ((hugs))

    Comment by AMom2Two | June 20, 2006 | Reply

  5. Heartened,
    I just read your blog that I guess was the fuel for the attacks on you in the clearing the air stuff. First let me share that I used to sell wound care products, and I have seen, and smelled it all. I understand what you mean my tunneling, or fistulas. This disease you are battling must be horrible, and I hope that you have at least found some dressings that are comfortable. I you are only using gauze, let me know and I will share some ideas.
    Secondly, we got off on a rocky start because of the concerns of others on Soul regardin my relationship to my agency. But, I will share with you, that I found that you were fair, and that you were in the end a very kind person. Regardless of what you may have done to anyone, no one with any class should have used your disease to make fun. I hope you get your wounds, and I use that word, because from what I see in the photos, that is what they are, under control. And know that I have also read Coversations With God, AND would highly suggest Eckhardt Toole to you, as well as Myrtle Filmore, and a Course in Miracles. Let’s just say…. I too believe that we are souls in a body. I also beleive that adoption is a soul deicision. I have an incredible story that I will share if you would like to pm me.
    Good Luck and take care of yourself.
    Diana

    Comment by Diana | June 24, 2006 | Reply


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