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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 Make-up has been replaced by vagina gel for my, you guessed it, eyelids.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 “doableâ€; 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.
Love,
Katie Schwartz
—
Footnote:
“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
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18 Responses to “Full Lips, Curvy Breasts And The Tightest Little Thyroid You’ve Ever Seen”
Leave a Reply to Tobra
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Jody – *standing next to Katie with a pitchfork and a torch*
GREAT POST!
I am crying over these numbers and feel rage over these numbers. Thank you for your hard work and posting this. I will link/post this on FB. No one ever reads anything I post about this subject but I will not stop, i’m wearing it on my sleeve now.
I FEEL YOU KATIE
I HATE WHAT THIS DISEASE HAS DONE TO YOU AND ALL OF US
I WISH I COULD GIVE YOU A HUG RIGHT NOW
I LOVE YOU KATIE SWARTZ, YOU ARE A BELLA DAMA
I’ll always be in your corner for the bar fight, with a broken bottle and a shot o’ moonshine, ready to take on all comers. My new job is this fight–for you, for me, for all of us.
I’m there with you too, never mind wearing my disease on my sleeves I do that anyway and anyone who wants to listen or is in the least bit interested there gonna hear it… i will be wearing my thyoobs on my knees maybe that will be sexy enough to raise enough funds.
while I was impatiently waiting at my docs surgery I scanned the boards around the walls and I saw everything other than thyroid information there used to be one I think they saw me coming and removed it so next time I go in I’m going to ask to put up one.
Katie You know we are so similar only I never hid from my disease i wanted to tell the world I got this f-ing thing called Graves and the GO … so I decided to research research and meet others in the same position as myself and thank heavens I did because if I’d left it up to the medical profession I would have had one foot in the grave.
I love you too Miss Katie.
woman, i have grown to love you more with each passing communique. you are like a hurricane of truth. and this article is amazing. it’s an odd dichotomy for me to feel so sad that you have to go thru this, and happy to have you to represent so vehemently. more than that, you make me think. you make me aware. you make me want to act. you are a success and i applaud you.
Katie, you pulled me to safety with your strength. I admire the raw uncensored way you attack this disease and the way that you keep calling to me when I start to fall back down my deep dark well of depression through all of this. You ask the ‘write’ questions..the ones that wake me up at night and get my pen moving. It’s time for me to put on my pink Thylicious hoodie and decorate my bandaid for thyroid healing and help make this disease ‘sexy’, so others will know and want to act too. I hate that you and all of us have to go through this crap, but if we have to, I’m glad we can do it together. I’m so glad I met you!
katie… you have put into words what my body feels. it’s been almost a year since i found out i had GD and the whirlwind i have experienced was something i’ve always considered “normal life” for me… after years without a diagnosis, i never realized anything was wrong… you get to a point where you just accept all the symptoms and explain them away with other reasons… the Dx was a blessing and a curse. at first i was scared. “graves?” OMG. it does sound “deadly”… then i was relieved… “oh good.. now they can fix me!” then frustrated… “what do you mean there’s no cure and it’s a lifetime of ups and downs?” then depressed “so my husband, my kids, my friends, everyone thinks i’m crazy… ok i am butterfly nuts” when i went in july for labs my dr said i was so extreme that i was unable to make an informed decision about my own treatment. luckily her husband is a psychiatrist and i was referred to him… their only other common patients? you guessed it- graves pt’s. i was out of my mind. and the ups and downs of anti-thyroids and anti-depressants and anti-anxiety, and heart meds, and sleeping meds, i felt like a senior citizen. the decision to have the RAI after i had a fun run in with agranulocytosis while battling bronchitis was super duper groovy. and now it’s a waiting game. yesterday was 30 days post RAI. i don’t even know how i feel. numb really… labs next week should tell something but i learn more from other thyroid pals than any blood test. i am BLESSED beyond words to have a great endo who has really taken great care of my body, and her husband who is trying desperately to fix my mind. i am blessed that they work as a team… but it amazes me that nearly no one understands this disease. when i first was diagnosed, i had to explain it endless times to every friend, family member, person, and colleague i encountered. maybe 2% even had a clue what GD was… education is key. how many undiagnosed people are out there, floating around like the lunatics we are suffering from thychosis and victimized by their own body?? a simple blood test could unlock the healing process. and while it will never be easy.. knowledge is power. at least i can be treated instead of keeling over from a heart attack at 30.. which is what she said would have happened if i had gone on much longer. resting pulse of 150 will do that to a girl.. so many could prevent liver damage, cardiac damage, eye damage, the list goes on, if they were able to catch this monster earlier. i’m on that list. they “think” it started 7 years ago with my last pregnancy. i lost 27lbs.. (but my OB didn’t check my thyroid…) it’s possible i had it prior to then. if i would have known then what i know now… if SOMEONE had informed me, a billboard, a tv spot, a magazine ad… anything! “hey check your thyroid… it’s a stupid little gland that can mess you up pretty bad but you’ll never really know!” continue to spread the word. continue to fight. you represent those of us in the know, and those who don’t yet know…but need to so badly.
Tobra if you had the RAI a month ago the next couple of months are going to be critical. Your thyroid will die and you will briefly feel normal. Then you will become hypor and they will begin the synthroid or other thyroid replacement medication. But it will be difficult because they will be trying to avoid over medicating you while your thyroid is continuing to die and you continue to become more hypothyroid. There will be a period of probably a few months where the right dosage 2 weeks ago may likely be the wrong (not enough) dose now. You will need to keep your endo current with how you feel and if you feel like shit be a pain in the ass.
It’s difficult to find the right dosage. It’s different for everyone even when things like age, weight, gender, and general fitness and so on are taken into account. Often the endos are happy to avoid the more egregious effects of undermedication and may not put enough effort into fine tuning things. And although I usually, 4 years post RAI, feel pretty good, I’ve never felt quite the same. On the other hand I have to consider the idea that I don’t really know what normal actually was.
Katie I remain by turns confused and outraged by the posts I read here like yours. You see, I went to my MD one day because he’d told me to watch my BP and it had gone up a bit. I commented that I was having one of those periods I sometimes have of a lot of energy, feeling REALLY good, and not needing much sleep. Nothing at all serious. He said that maybe he should check my thyroid, and when he got the results said I should see an endo and gave me a couple of names. I wasn’t that bad and was having surgery for something else so this took a while. The endo did a lot of tests which took a couple of months but my symptoms didn’t get bad until a few weeks before the RAI, about the time the test results came back.
He did a pretty good job of explaining things to me with a few lapses. My main complaint was that I think, as noted above, that he was a not quite aggressive enough in dealing with my subsequent hypothyroidism, as I said because I think he was pretty concerned about overmedicating me. Cost of all this was a few copays for office visits and a copay on the medication which comes to a few hundred a year. it remains a mystery to me why so many doctors are so ignorant about all this, most of the ones I’ve talked to seem quite knowledgable.
Maybe we should put out a list of doctors we like, if you can figure out a way around any legal issues that might entail.
Zari
As someone who is trying to get a definitive diagnosis, I can only raise my hand and say count me in.
I’m with you 100%. But I’m not out of the thyroid closet. Everytime I poke my nose out, I get stupid comments and go back in – my favorite is “oh now you will be able to lose weight” hello, there’s more than my weight that’s a problem. It’s that bone tiredness, the kind that makes you feel like you have the flu and have been run over by a trunk. The menstrual periods that occurred when they wanted to and made any room I was in look like a crime scene where there was a wholesale slaughter. The nuttiness – is that me? is it my hormones? is it my thyroid?
I got your back
We need some celebrity to come forward and _admit_ to a thyroid condition. Not like Oprah, where first she did and then she didn’t have thyroid issues. But if I’m afraid to stick my nose out the closet, I can’t imagine a celebrity that would be willing to do it…
Sobering. But, very good writing! I posted this to my FB page because it is part of me. I have hashimotos. That fact doesn’t change. It is just how I decide to deal with it that defines me. I really am grateful for this website. It is empowering! The more we learn, the better off we are!Thanks for the articles!!!!!!!!!!
You’re just amazing, Katie. Count me in with the people who love you. What a sobering and inspiring post.
Wow I was absolutely blown away! Could not agree with you more!
I don’t know what the issue is, whether TD is sexy or not, but we have to keep up the fight and raise awareness 🙂
such an inspiration!
I like the quote “When we are silent, our diseases win” because there’s so much truth in it. You’ve inspired me to do all I can to raise awareness.
BTW i made this video ages ago for thyroid awareness week
http://www.youtube.com/watch?v=TWfMw0cPXiE and hope to continue making similar videos.
Thank you x
Katie, you are the most wonderful writer, but as a woman – whoah, strong, beautiful (despite the disease) and much much more.
I hope that the policy leaders in your country get a load of what’s going on. Is there already a body that could help? Or that you could lean against?
xx
C
Hi Katie,
I live in the UK so I am incredibly lucky that my thyroid treatment is free. However, the doctors still don’t particularly care, they still dismiss my symptoms and aren’t interested in joining the dots. I was at the docs today as the optician has told me I have photophobia – the doc said keep away from light…. Reading your post I can see now that there is obviously a thyroid related connection here that yet again hasn’t been picked up on.
I utterly sympathise with your symptoms, my thyroid swings between classic underactive and classic overactive symptoms seemingly hourly which I always thought was all in my muddled mind but reading your post I can see that yours does it too.
I wonder when the world will wake up to this?
xx
Hi Lisa;
What you are going through in the UK is awful! We’re partnering with multi-national thyroid organizations. WE HAVE TO UNITE – all of us are going through such vile shite with this thyroid, which is so widely misunderstood.That is the saddest part, for patients. It’s just awful.
Check out this post re: UK call to action – http://dearthyroid.org/all-uk-and-multi-national-thyroid-patients-and-organizations-now-hear-this/
Dear Katie,
You make me count my blessings 100 times, since my own Graves’ has given me two prolonged remissions. We must FIGHT and keep it up!
Thank you a thousand times for this piece!
Much love and support,
Linda
Great post. I have Hashimoto’s. Like Lisa I am lucky to live in the UK and get free treatment, but I’m not costing the NHS a whole lot, because of the assumption that once the tablets are prescribed all that’s needed is an annual blood test. I even have to push quite hard to get the actual figures!