Full Lips, Curvy Breasts And The Tightest Little Thyroid You’ve Ever Seen
Nothing screams sexy like disease. Having Graves’ disease, the deathiest sounding name for a disease–I mean, really, why not just call it the coffin?! When I was at my sickest points, my hand tremors would make a Parkinson’s patient envious. Explosive diarrhea, a la, will my intestines be sprinting out of my ass for an encore. Raven locks replaced with a ginger halo and clumps of hair falling out, devoid of any prompting, like, oh, I don’t know, looking at it?! A heart beating so fast, I thought it would pound through my rib cage and jump through my skin, march over to my face and bitch slap me with its valves. Sweating like an Olympic athlete just from getting out of bed. Weight gain worthy of an award winning carbivore. Painful, hemorrhaging like a stuck pig menstrual cycles or menopausal symptoms, depending on how my gland chose to swing me. I’ve always wanted to be a butterfly’s bitch.
And the Graves’ Opthalmopathy, what a fucking delight that is. I don’t have buggy lady balls. No, I have persistent swollen eyelids that topple my eyelashes. Make-up has been replaced by vagina gel for my, you guessed it, eyelids. Extreme sensitivity to light is such a treat, I can’t be indoors or outdoors without wearing specially made, glare cutting, $3-500 a pair sunglasses and I still get blindy-blind spots if there’s even a smell of light. Living in Los Angeles, this isn’t an issue at all. Chronic blurriness, akin to viewing everything through a murky aquarium. Double vision, having never wanted twins, I have them in people and things. I’m my own Double mint commercial, provided you think I’m hot enough for the viewing public.
Looking and feeling like a monster, is it any wonder I ran like a dog without passing go into the Thyloset (seclusion)?! After waking up from what felt like a coma, thyroid psychoses, I looked in the mirror at a chick I’d never met and had no interest in befriending, and haven’t looked in the mirror since, that was 2-3 years ago. Having Thymentia, a side effect, which better not be permanent, of Graves’ disease, I really don’t remember, or too much of anything else for that matter.
The cost of treating my disease with insurance is over $2,500 a month. When issues arise, the cost goes up to $3,500 + per month. I’m not rich. My family isn’t rich. I am working my ass off to pay for a disease that I never asked for. Oh, believe me I know I’m not alone. This is a systemic problem for too many people, no?! Just thinking out loud for a minute.
Still. My disease is sexy, right?
Normally, our Dear Thyroid community writes hilarious, irreverent, angry, sad, happy and always brutally honest and smart letters, to and from their thyroids. I know this post is a bit of a departure. I’m just so angry, I could spit twice and die. Wait, I almost did, twice. My bad. I can’t stop circling back to a few issues, funding for a cure, sexiness, education, awareness and cost of treatment and maintenance of thyroid diseases and cancers.
AIDS, Diabetes and Breast Cancer deserve every single penny they receive and more. I wonder though, how did they become sexy? Sexy enough to fund, to find a cure for? If sexy is what it takes to get funding, that is. The affects of the aforementioned diseases are as devastating to the patients as they are to their family and friends. Too many lives are lost as a result of said diseases or as a consequence; similar to thyroid diseases and cancers, no? Yet there is still little to no funding for our diseases.
Why, because our diseases aren’t sexy? Because we haven’t been endorsed by celebrities willing to attach their names and voices to our diseases loudly and proudly? And by the way, intellectually I understand why they don’t. This disease is severely isolating and humiliating to the majority of patients. If I’m struggling with coming out, how can I expect them to?
What is it? Because I REALLY NEED TO KNOW why those diseases are allocated funds for research for a cure, and deservedly so, but our diseases aren’t.
To treat and manage our diseases, with or without insurance, the cost is astronomical. Some of us can’t afford treatment, or can’t afford to maintain a job because we’re too sick, and others, well they lose everything, and, or they go untreated, and eventually lose their lives. There is no financial assistance as readily or generously available to our diseases as there are for other diseases, why? Are we not sexy enough to subsidize?
13 Million Americans have a thyroid disease and don’t even know it. In my experience, as part of an annual check-up, most practitioners don’t check thyroid function. If they do, or if a patient winds up at a doctor’s office complaining of can’t-connect-the-dots-glaringly-thyroid-related symptoms and their results are normal; that is, if our doctors haven’t lied to us, or if our doctors feel we aren’t hyperthyroid enough, or hypothyroid enough, we aren’t treated. Similarly, many of us have to beg for ultrasounds of our thyroids, even if we complain of unrelenting tightness around our throats, choking us, or if we’ve found a lump. Frequently, after detailing a laundry list of symptoms, doctors “there-there” us, and sends us on our merry way with a prescription to the nearest psychiatrist.
Women of a certain age or with a history of breast cancer get mammograms regularly, with or without insurance. When running a metabolic panel, screening for diabetes is par the course. When visiting a gynecologist, the regular blood work-up includes AIDS testing. Speaking for myself, pre-diagnosis, my thyroid could’ve been in my elbow for all I knew. I had no idea what a thyroid was, or what it did, so how could we possibly expect 13 Million undiagnosed Americans to know?
Where are the funds for education about screening? I see billboards, ads and thousands of websites, shit; I even receive mailers about the importance of screening for AIDS, Diabetes and Breast Cancer, including places to go who will screen me for FREE (yes, yes, yes, this is great!). Yet, I’ve never received or seen anything like this for thyroid diseases and thyroid cancers; have you?
Hundreds of colleagues at a hospital got together to create the below video for breast cancer awareness and while I celebrate and commend their endeavor with enormous gratitude, a little voice inside aches and whispers “Where are the doctors, nurses, patients, janitors, cooks and staff, rallying to create a video for thyroid diseases and thyroid cancers?
If they, the government, celebrities, doctors and the health care system aren’t going to give us what we need to find a cure for our diseases and treat us properly, than the onus rests with us.
We deserve better, so let’s make it better! When we are silent, our diseases win.
Why should you care about our thyroid, be it cancerous or diseased, with Papillary and/or mixed Papillary/Follicular Cancer, Follicular and/or Hurthle Cell Cancer, Medullary and Anaplastic Cancer, Graves ‘ disease, Hashimoto’s, Thyroiditis, Hypothyroidism, Hyperthyroidism, Thyrotoxicosis, Thyroidectomized, Thyroid Psychoses, or if we were born without one? It’s all so “treatable” so “insignificant” so “doableÃ¢â‚¬; so anything but synonymous with death or a severely impaired quality of life.
And, it’s so unsexy.
- 50 Million Americans (women, teens and men) have a thyroid condition. Funds per year?
- 13 Million Americans have Graves Disease. Funds per year?
- 1.5 million Adults and 205,000 children have Hashimoto’s Thyroiditis. Funds per year?
- 37,000 new cases of thyroid cancer are diagnosed each year. Funds per year?
- 13 Million People have an undiagnosed thyroid disorder. Funds per year (for education and awareness)?
(If you have the statistics, by all means, please send them my way because I couldn’t find them and I scoured the net trying.)
- 1 Million Americans have AIDS. Funds per year 2.9 Billion
- 23.6 Million Americans have Diabetes. Funds per year 1 Billion
- 205,000 Americans are diagnosed with Breast Cancer each year. Funds per year 716 Million.
Though our diseases isolate us, we can change that. If we have each other, we aren’t alone anymore. If we band together, if each one of us gets more involved, thousands, maybe even hundreds of thousands of people will listen. They will hear our voices and see our faces. And one day, sooner than later, they’ll be making videos like this for us.
Please feel free to take this post and embed it in your blog or send it to someone who you think would benefit from reading it.
“When we are silent, our diseases win” — Mark Davidson
“Full Lips, Curvy Breasts And The Tightest Little Thyroid You’ve Ever Seen” — Tony Deconinck
Tags: lack of awareness and education for thyroid diseases and thyroid cancers, no cure for thyroid patients, no research for thyroid patients, thyroid health care issues, thyroid health insurance issues, thyroid news