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Glanding Along And BOOM

Post Published: 15 November 2009
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Category: Patients for a Moment Blog Carnival
This post currently has 7 responses. Leave a comment

Glanding Along and Boom, Patients for a Moment Blog Carnival, Dear Thyroid

How do I spell my disease? Fucked; emotionally, financially, physically and mentally, ongoing blows to my face reminding me that I have Graves’ disease and Graves Opthalmopathy. No matter what I do, my lover dedicatedly serves unspeakable shame, paralyzing guilt and systemic fear.

I don’t commit easily. Marriage is off the table. Weddings make my gums itch, my knees weak and gift me with hives; yet I was forced to commit to Graves’ without my consent. Traversing through the loins of my family and skipping a generation, came Graves’.

Mired in denial, incapable of admitting that I had a disease, or uttering it aloud to someone with a pulse for 2-years, I took up residence in a self created thyloset (thyroid closet); even though I’ve had this disease for 10-years, I was diagnosed in 07′ after multiple misdiagnoses and mistreatment, and of course, mistreatment post diagnosis. Worse, I still can’t tell people in my “Other life” about it. I don’t know how to. I can’t find the words. I’m not yet ready to field questions with articulate answers. Shit, I can’t even finish a fucking essay about it.

My mind and body morphed into an unrecognizable stranger, so yes, I felt like a monster. I went from 145 pounds and a devotee of outdoor exercise, to an obese, unfit, freak of nature (or so I felt, feel?), with crazy swollen eyelids. From 20/20 vision to I’m fucking blind, viewing the world through a murky, unkempt aquarium. I couldn’t recognize anyone, though they were standing less than a foot away from me.

Undiagnosed and with no knowledge of what a thyroid was, much less its whereabouts in my body (it could’ve been in my vagina for all I knew), and even less knowledge about the power of the mighty gland, a gland, seriously?, life as I knew it was forever changing, and did change.

Post diagnosis, I got sicker. I became thyroid psychotic (mental illness in my family is a punch line, not an option for diagnosis), thyrotoxic, and had multiple thyroid storms. On the precipice of death, but too insane to realize it, my mother and my sister staged an intervention to save my life. Guilt aside, I would have been dead 3-4 weeks later otherwise.

How do I learn to live side-by-side with that and accept it?

How do I forgive the doctors who mistreated me, misdiagnosed me, and lied to my face, assuring me that I was fine and there was no cause for concern, though my life was being derailed? How do I begin to forgive when so much of my time was lost to a disease I couldn’t control? I lost time with my family and friends. I lost time to flourish as a person and in my career. Upon diagnosis, my insurance company dropped me, to the tune of 24-hours later. This, I should forgive? Am I expected to forgive the medical debt I have, and continue to incur, to treat and manage a disease I never RSVP’d for? The stack of medical bills laying in wait won’t, why should I?

I am angry. Life isn’t fair—I get it. I see a psychiatrist (shrinktail) once a week because I am committed to finding my way back to myself. The business of disease, and disease giving me the business isn’t easy, none of it is. ,  The one change I’ve made, is that I no longer say “How do I begin to forgive myself”. Progress, to be sure. Still. It’s not enough.

I never wanted to be a bride or to be married, but here I am; the bride of Graves’, shacked up to a ball and chain I loathe with every ounce of my being.

To this day, I can’t spin my entire thybacle, as mentioned. However, at the many heights of my disease, I wrote numerous hate letters to my thyroid, beginning with Dear Thyroid. I founded DearThyroid.org, a place for fellow patients with thyroid diseases and thyroid cancers to write letters to and from their thyroids, among other literary things.

I believe in the power of the written word. I believe there is strength in numbers. I believe that we can achieve healing through camaraderie. I believe we all have the power to invoke change if we’re willing to do the work. However, while doing that work, knowing that there is a place to go and a community to celebrate my successes and catch me when I fall, well that’s just fabulous. Eventually, in time, I’ll get there, wherever there is.

Even if I can’t file for divorce, at least I can practice thylygamy.

*Patients for a Moment Blog Carnival hosted by Chronic Babe (love this dame, she’s committed to giving chronic illness a beautiful, unique lifestyle, very healing).

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7 Responses to “Glanding Along And BOOM”

  1. Lolly says:

    Katie girl I fucking hear you load and clear. Graves sounds like something you serve with veg leave off the meat. I thought I had my foot in it when I had a storm.

    And what’s with the fucking eye disease bad enough you get Graves but the eyes, windows to our souls now all others can see is WTF are you looking at are you talking to me.

    You practice thylygamy divorce takes too long and they might take more than you bargained for.

    Did I ever tell you “I love you” and most of all I love the way you express yourself through creative witty writing. Even though I know it is witty, I know deep down it’s how you feel about the whole thing. Fucked is too nice a word to describe your disease So don’t be soft find me a word that really describes your disease and don’t hold back.

    Lollyxox

  2. Zari says:

    Katie although I was never as gbadly misdiagnosed as you were, I’ve had a couple of interactions where the doctors were way off. My favorite was the doctor who thought the swelling on my gums was an STD. After the dentist said it was an abcessed tooth and gave me a root canal I went back to the doctor and very pleasantly let him know what it had been. He thanked me for letting him know, while no doubt feeling pretty stupid. He probably won’t make that mistake again.

    I’m an architect. Compared to the human body, buildings are very simple. And I make mistakes all the time. Ask any building contractor and they will tell you that making mistakes is what architects do best. So why should doctors be different?

    Oh here’s another one. Years ago a worm crawled out of my mouth one night. That was when I learned never to make sushi from cod…….I brought it to the doctor in the ER who was baffled. he sent it somewhere where it was sent somewhere else. For a couple of weeks everyone who saw it was confused, and everytime I saw the doctor he brought all his medical students into his office. Finally it was identified as a “fish worm” Here’s the thing. Everyone had this inch long worm to look at and they still couldn’t figure out what it was. It had apparently been living in my lung and when it got hungry and took a bite, it hurt! And that also mystified everyone. And it wasn’t some hormone not completely understood, it was an inch long worm!

    Anyway, I forgave myself for being stupid. I forgave my wife for refusing to french kiss me for a week. (I can hear shudders of disgust over the computer now….)

    You didn’t choose to have Graves. So why feel ashamed of something you had no control over. It’s just a disease.

    Of course as you know, I get just as angry, just as bitter, just as outraged over my other disease. And that one wasn’t my fault either. It’s what I like about DT, the expression of disgust and rage at how we sometimes feel betrayed by our own bodies. Which after all are just warming up to their final evil plan of dying on us all together…

  3. thy_r88gous says:

    OMG u took the words right out of my mouth. right off the paper i wrote my letter to my thyroid on. Seriously FUCKED! Thats what i say when i look in the mirror. Fucking monster. Fucked! Fucked! Fucked! Ill have to send my letter in soon so you can read it. You are not alone katie girl. I feel ya dear.

  4. yodat/Jody says:

    Katie,
    You took what I have beent thinking all along and put it on this wonderful website. I stand up and applaud you! This shit is hard. I wanna be free again to run around and eat Swiss cake rolls by the dozens. It’s amazing what different people we become after our diagnosis. I am SO thankful that you thought to write letters to your thyroid and start this little site. It gave us all a home away from home and a place to feel comfortable.

    I appreciate you and all that you and Liz do for us Thyriodians. 🙂

    Lubs!

  5. Cyndi Woodruff says:

    Katie,
    I just read this. I’m a bit behind due to homework, but trying to get caught up.
    Honey, I am so sorry for all that you’ve been through. I have hashi’s, but to me, it seems like nothing compared to the shit you’ve experienced….and still are.
    Please know that you are so loved….albeit, we’re “internet” buddies and have never met—-but that doesn’t make the love any less real.
    You are an awesomely strong woman! I am so glad that you and Liz work to make sure that we’re all heard and have a safe place to go and scream a bit.
    I love you, sweetie. (((HUGS)))
    Cyndi
    in North Carolina

  6. Kathy says:

    Katie..YOU are why I am still here. When I am at the bottom of my well, you reach down and pull me up, make me open my own eyes to see even the tiniest beam of light. YOU are why I can be brave and write the words that I do..You listen, don’t judge and care about me and all the others right where we are. I feel safe with you. Thanks for all you do for me and everyone else. We do love you!

  7. lori says:

    Katie,
    It took me this long to respond because except for the eye’s, I think there may be lot more in common than I realized, and I have yet not been able to put my story on paper and your’s made me face it more (it’s hard but it’s a good thing really). Reading that you also experienced the hell’s of not only years of misdiagnoses but more damaging to the phyche, “mistreatments”, well, those are the demon’s I have not dealt with yet myself, but they fester and you have no choice but to let them rise to the surface and hit you cold in the face. When someone mistreats you, especially someone you trusted to “do no harm”, it’s too surreal and then you suffer, not them.

    It’s just not fear, but Katie Darlin, we got your back too!!!

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