Dear Thyroid^TM

Martin Bosworth has died. He was 35-years-old and had hypothyroidism, among other health issues. However, he died of a pulmonary embolism caused by deep vein thrombosis. “Both DVT and PE may be asymptomatic and difficult to detect.” (Cause of death found on his memoriam page.)

I met Martin via Mary Shomon. She had written about him, “Martin Bosworth: One Man’s Thyroid Journey” regarding his post “Who’s Gonna Take The Weight”, which inspired a Dear Thyroid letter, “Who is Thysponsible”, written by Misti.

This was quintessential Martin—inspiring others.

He was a fierce advocate for health care reform and blogged often about it on Boztopia.com, his website.

Martin and I frequently spoke about his health and insurance issues, among other things. During each conversation, Martin’s scathing wit and sarcasm were ever present, replete with snappy wisecracks; clever, neurotic, funny, engaging and unabashed expressions of his feelings. Honestly, I wish I was as in touch with my emotions as he was. Often, I felt like the proverbial guy in the relationship (though I don’t buy into those gender assignments, I needed to make the point). On a serious note, I envied his ability to feel his way through his life versus sitting on the emotional sidelines of it.

With health issues plaguing him, he wanted to take an aggressive approach to healing, and did. Without health insurance, getting proper medical treatment was, as we all know, fucking impossible! Pre-existing conditions don’t make us prime candidates for private insurance. Having walked the mile, I’m keenly aware of this (as we all are). When diagnosed with GD, my insurance company dropped me within 24 hours. I’ve never been able to get private insurance since. In fact, the only way you can get insurance with a pre-existing condition (when deemed uninsurable) is if you work for a company, have a significant other, or buy into it via marriage, or procure it through other means that I can’t discuss because if I do, I risk losing my own shitsurance.

When last we spoke, Martin told me that he wasn’t afraid to die. I remember asking him why; being terrified of death it seemed apropos. Martin stated that he was proud of what he had accomplished and continued. Of course, I kept hocking and interrupting him to stop with the deathversation, assuring him that he wasn’t going anywhere, not with so much left to accomplish—“You will get well. You will find your way, you will, Martin.” I said. I believed with every ounce of my being that he would be fine…

If we are to learn anything from Martin’s passing, a gentle reminder that life is short, is a given. Of equal importance, fight to reform health care. Never stop fighting for what you believe in. When the system is failing you, when we rest on our laurels and don’t fight back for our basic human rights, than we’re failing ourselves.

In Memoriam articles, etc: Mary Shomon, Thyroid Patient Advocate/Award Winning Author: A Tribute to Writer, Advocate and Thyroid Patient Martin Bosworth,  The Seminal, Managing Editor, Consumer Affairs, NPI Advocate and Martin’s Memoriam Facebook page created by his friends and family.

Martin, you have been a dear friend and we will miss you terribly.

Love,

Katie

The idea of writing a letter to a body part or an MIA body part seems… well, odd; at least it did to me until (at the many heights of my disease) writing to my thyroid was one of a handful of things that saved me.

Our tales of life in the Gland Canyon need to be told in as many letters as we feel it takes.

We spend so much time talking about our glands, to our doctors, friends, family and ourselves.

We never actually talk to them, and let them know what they’ve done to us—good or bad, regardless of incident; telling our gland, essentially our disease what it has done to us or for us, or taken from us, or given to us, is both cathartic and healing; for ourselves and our fellow members of the Jacked Thyroid Club.

We learn from each other. We realize that we’re not as alone as we thought we were. Our symptoms, though frightening and isolating to us, are removed from the closet and dropped into the world where they belong.

When we share our comments about each letter and when authors of letters respond to those comments, we grow as a community.

Letters and comments remind us of our strength, our ability to persevere and engage about something that has forever changed our lives. Additionally, our letters and comments create awareness for thyroid diseases and thyroid cancers.

When we share our stories, we put our doctors on notice; by extending gratitude for the good work they’ve done, or telling them where they’ve failed us. Similarly, when we come together, we are that much closer to attaining a greater good; hopefully lobbying for funds for a cure for thyroid autoimmune diseases and thyroid cancers, as well as funding for research and education to improve OUR QUALITY OF LIVES and educate those who don’t even know they have a thyroid problem, but are barely surviving, desperate to figure out what the hell is wrong with them.

As Mary Shomon wrote on Thyroid Awareness Month: “59 million Americans have thyroid problems, it turns out that the majority of you who have a thyroid problem don’t even know it yet!. You haven’t been diagnosed. You’re not being treated. You may not even know what or where the thyroid is!”

On that note: Write your hearts out! Submit Dear Thyroid Letters, poems, haikus, songs, paragraphs, whatever you want, and as many literary things as you want to submit. Bring us together. Fight for change and drag yourself kicking and screaming out of the thyloset. If you’re not ready to write a letter, share your thyroid story in pictures.

Update: As a community, we have written over 80MM words. Keep writing and let’s hit another 80MM words and more. WOW… That took my wig off.

Love,

Katie

Dear Thyroid is a literary support community written by and for thyroid patients and their families. Our goals are: online support, offline support, empower each other by sharing our stories, create awareness and find our way through life in the Gland Canyon. By sharing and reading each other’s letters, we learn from each other, feel less alone and connect.

As we say, our thyamily vs. community is outspoken, brave, funny, irreverent, smart and beautiful. Our thyamily continues to grow. We have many types of thyroid patients; Graves’, Graves’ Eye Disease (TED), Hashimoto’s, hypothyroid, hyperthyroid, thyroid cancer patients, thyroid cancer survivors, thyroidectomized, nodules, goiters, and patients born without thyroids, what fun!

Thyroid patients write and submit love and hate letters to and from their thyroids; poems, haikus, songs and rants. Of course, we’ve thyroidized those names to, thyetry (poetry), thykus (haikus) thyongs (songs) and Thyrants (rants). Similarly, families of thyroid patients are encouraged to write their love and hate letters to their loved one’s thyroid.

For our visual storytellers, we have a Flickr Pool. Every month, Liz comes up with a theme. Patients tell their story through pictures. January’s theme is “Before the Disease”. Previous themes can be found here, Dear Thyroid’s Flickr Pool.

We also have two columns:

1. Sundays, we publish “How To Kick Your Thyroid’s Ass”, by Liz Schau. HTKYTA is a nutrition column for thyroid patients. We love this column because it empowers us to look at our respective diseases differently by considering new approaches to managing our symptoms and so much more.
2. On Wednesday’s we publish “Going For The Throat”, by Robyn Davis Hahn. Why yes, we love this column too, and find it very empowering. GFTT is a health care column covering a broad spectrum of issues that thyroid patient’s face and much more.

We have Dear Thyroid Forums for patients to connect, rant, and share personal stories, health care stories, ideas, news and information, among other things.

Our health podcast is called “Tales from Thyietnam”. We interview renowned thyroid patient advocates, doctors and folks with a deep understanding of thyroid diseases and cancers from the patient perspective.

We also offer thyroid humor T-shirts at our store. We have wonderful resources for thyroid patients as well.

Dear Thyroid endeavors to become a non-profit organization, so we do not accept revenue or donations of any kind. When you buy products from Dear Thyroid, which we encourage you to do; you’re loudly and proudly saying, I am “Wearing My Disease On My Sleeve™”

Find out more About Us! Click around the site. Share your story with other patients by submitting a letter. Participate in offline support. Wear your disease on your sleeve. Get involved in the forums. Connect with other patients. We’re here to un-isolate ourselves and we’re in this together.

With Love from Dear Thyroid,

Katie

Last month I wrote an article called,  Full Lips, Curvy Breasts And The Tightest Little Thyroid You’ve Ever Seen.

Aside from supporting each other as we find our way through the Gland Canyon to reinvent ourselves; another core goal we have as a thyamily, is to create AWARENESS.

Thyroid diseases and thyroid cancers do not receive the kind of funding for education, prevention, or awareness, much less a cure, which they so rightly deserve. Similarly, we want better treatment, improved health care, and for our doctors to be held accountable for their actions.

We do not have celebrity endorsements. We do not have major sponsors backing our endeavors. Therefore, the onus rests with us to spearhead an unprecedented grassroots campaign.

Collectively, our voices are heard on Dear Thyroid. Every time we write letters to and from our thyroids, we scream at the top of our lungs, This is what my thyroid is doing to me. This is not working. This is what I have endured as a patient. I have been through 15 doctors and I still don’t have a diagnosis. I can’t get the medication I need because my health insurance won’t cover it, and so on and so forth.

A good friend of Dear Thyroid, @Greetums nominated Dear Thyroid in the Health Category for a Shorty Award. Though, it’s under my name, it’s irrelevant because it’s not about me, it’s about us. This award is an opportunity for us to continue our grassroots effort to invoke change and make people aware of thyroid diseases and thyroid cancers.

If you’re on Twitter, vote. If you aren’t on Twitter, create an account, it takes a minute, and vote.

Your answer to the question, “#Health Because…”

• You want funding for thyroid cancer.
• You want a cure for thyroid cancer.
• You want a cure for thyroid autoimmune disease.
• You want funding for education.
• You want your doctors to treat you as more than the sum of your numbers.
• You want improved health care.
• You have Hashimoto’s.
• You have Graves’ disease.
• You have Graves’ Opthalmopathy.
• You were born without a thyroid.
• You had a thyroidectomy.
• You have thyroid cancer.
• You had thyroid cancer.
• You want preventative education for thyroid diseases and thyroid cancers.
• You want to create awareness for a disease that is perceived as the step child of the endocrine system, and you have fucking had it!

Whatever your reasons, vote; for change, for hope, for awareness, for a new beginning and for possibilities.

You can vote every day. Here’s the link to vote: http://shortyawards.com/katieschwartz. Pass it along to your friends and ask them to vote today and every day. Speak up and out about your because.

Together we can do anything!

Love,

Katie