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Thyroid Support Ireland

News, information and support for people with Thyroid conditions who live in Ireland

The  Story of Dear Thyroid.com

 About.com's Thyroid guide  Author Mary Shomon has been a Dear Thyroid fan since the start.

Founded  in 2008 by two thyroid patients, comedy writer Katie Schwartz, and writer/editor Liz Schau, DearThyroid.com is a fresh new voice on the thyroid scene. It's a  US web site about thyroid disease, where the onset of a thyroid condition is referred to as "Hurricane Thyreena".

Dear Thyroid images are all of perfect 50s pinups and housewives, and where thyroid-related weight gain doesn't make you "fat," it makes you "thyluptuous," you know you're not going to find run-of-the-mill thyroid discussion. And the web site Dear Thyroid does not disappoint.

Alternating between raw honesty and feisty sarcasm, the site/blog was launched in the summer of 2008 as a place for women to write letters to their thyroid glands. The result is an irreverent, funny, and sometimes painfully honest look at the emotions patients go through as we grapple with the impact of thyroid conditions.

Mary says:"I've been a fan of the site from the start. There's incredible honesty in the letters, and in the approaches both Katie and Liz are taking in their unique brand of thyroid outreach. Katie brings laser-sharp wit and self-deprecating honesty, and Liz -- who is also interested in and knowledgeable about nutrition, food and healing -- is delving into thyroid-related topics of interest, including a great piece on going gluten-free. Both are terrific writers, and each has her own unique voice at the site.

Thyroid Advocate and author Mary Shomon  conducted an email interview with Katie and Liz, who shared a great deal about their own personal thyroid struggles, what brought them to the Dear Thyroid project, and what plans they have for the future.

MARY SHOMON: Can you tell me a little more about each of you, and your thyroid histories?

KATIE SCHWARTZ of DearThyroid.com: I am from New York. I live in Los Angeles. I'm a dame in my 30s. I have Graves' disease (which is the deathiest sounding name for a disease) and Graves' eye disease. My type of Graves' eye disease, I am told, isn't common. I don't have bulging eyes. I have persistent swollen eyelids. At first, they were so swollen, my 20/20 vision turned into a murky swampland.

A year ago, I came to learn that Graves' disease runs in my family. I have a cousin with Graves' and we think my grandmother might have had it.

I refer to my thyroid story as Hurricane Thyreena because Graves' brought me to the point of near extinction. Prior to being diagnosed, I didn't know from a thyroid; what it was, or where it was, much less the power it had over a person's mind and body.

I've had this disease for nine years. During that time, I have dealt with flagrant medical maltreatment, blatant negligence and improper treatment. Graves' caused irrevocable damage to my mother, Link and my sister Kerri -- not to our relationships, but to their spirits and the extreme lengths they had to go to, to quite literally save my life. Graves' robbed me of time, a value I have always treasured. Graves' ravaged my mind, body and soul, turned me inside out and upside down until it became me and I became it. Graves' gifted me with shame, never wanting to be touched, embarrassment, exacerbated self hatred and a notion that I was and still am damaged goods. The desecration of trust for the medical community I have is systemic and malignant. I have a visceral reaction when I need to see a new doctor, or if an issue comes up with an existing doctor. My fear of losing more of my life, more of my time, more of me, to Graves' or any other disease, is emotionally paralyzing.

I am no wiser; no more appreciative of life than I was before I got sick. I learned nothing. I gained nothing. I didn't ask to get sick. I didn't invite this disease into my life.

I will try to abridge my thyarn (thyroid yarn) as much as possible. In my forthcoming book, a dark humor essay collection about my life, titled Emotionally Pantsed, there are three essays featuring painstaking detail about my disease.

Three years pre-diagnosis, I began experiencing erratic mental symptoms of Graves', waves of depression, slight paranoia and irritability. Concerned, I asked my doctor what he thought it might be. Of course, he chalked it up to PMS, stress-related PMS, or hormones (who knew my "down there" had so much authority over my mind?) He took my blood. He did not check my thyroid levels. My white blood cell count was insanely high and continued elevating annually.

Year four – I woke up with swollen eyelids. My healthy menstrual cycles diminished, I had excessive hair loss, diarrhea, sporadic rashes and weight gain worthy of an award-winning carbivore, hand tremors and muscle weakness all RSVP'd to the Graves' party. Slowly, I began extricating myself from my life. I couldn't explain what I didn't know was happening to me. I went to see an infectious disease specialist. He emptied my veins and did a full exam. A few days later he said, "Everything came back normal, you're fine. I have no idea why your eyelids are swollen, but we'll figure it out." Okay, I thought.

I spent that year seeing more "gists" than I'd ever seen in my life – dermatologists, ophthalmologists, allergists, et al. Each eagerly whipped out their scrip pad to treat me for a disease they didn't know I had with prescription cocktails. Each scriptail exacerbated my symptoms...or perhaps they were side effects of the medication. They didn't know and neither did I. At the end of the year, I saw a wonderful ophthalmologist at the Jules Stein Eye Institute. Thanks to his brilliance and genuine desire to help patients, he explained that I probably had Graves' disease. That lovely doctor spent over an hour with me explaining Graves' disease, Graves' ophthalmopathy, thyroids, parathyroids, endocrinologists – even better, a few days later, I received a detailed three page report.



 

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