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Thyme For Some Literary Healing
As you know, we are a literary thyroid brand; hence the name “Dear Thyroid”. Patients write and submit Dear Thyroid Love and Hate Letters to their thyroids; thygraphs, thyrants and thyraves, among other things.
When we come together on DearThyroid.org to share our stories and comments, we grow as a community. Our voices are heard loudly and proudly, in our own words.
Sticking with our literary brand, let’s write together as a thyamily this afternoon and flex our thyliterary skills.
- If you could describe the look and feel of your disease in one sentence, what would it say?
- If you could say anything to your thyroid right now, what would it be and why?
- How many times were you misdiagnosed before you were correctly diagnosed?
- Do you have a doctor you love? Please tell us why you love your doctor?
- Do you feel your disease makes you want to become reclusive? If so, why? What is it specifically?
Please leave your answers in comments. Let’s learn from each other. Share our stories and thoughts, and see where this lovely afternoon takes us.
Tags: Dear Thyroid Letters, Dear Thyroid literary brand, hyperthyroid blog, hyperthyroid support, hyperthyroidism blog, hypothyroid support, thyroid cancer blog, thyroid cancer support, thyroid literary support
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18 Responses to “Thyme For Some Literary Healing”
Leave a Reply to Christina
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1) If you could describe the look and feel of your disease in one sentence, what would it say?
((a building crane that smashed my body so hard, I was pummeled through the earth and towards the ocean.
2) If you could say anything to your thyroid right now, what would it be and why?
((Fuck you and die))
3) How many times were you misdiagnosed before you were correctly diagnosed?
((2 dozen times))
4) Do you have a doctor you love? Please tell us why you love your doctor?
((I have two doctors I love, both are in BH, CA. If you want a referral, let me know. They rock.
5) Do you feel your disease makes you want to become reclusive? If so, why? What is it specifically?
((Yes! I have been reclusive for so long, I forgot that I used to be an outgoing, vivacious person. Not sure I can forgive my thyroid for taking that away from me.))
1. Yikes, looks gray somedays and bright and shiny others.
2. I wish you could have stayed with me because you worked perfectly fine but the cancer got a hold on us and it was decided you had to be left behind.
3. I had a lump in my neck for two years that my doctor told me was probably just sinus drainage because my thyroid levels were perfectly fine.
4. I love my endo because she calls me herself and more importantly she listened to me about my immune system concerns and ran bloodwork which showed that I had high red blood cell counts which explained my sleeping problems. My family doctor attributed my sleeping problems the same as I did, anxiety from the cancer.
5. Depends on the day and my energy levels. Once I push myself out the door I am as social as a butterfly (no pun intended) but if I did not push myself I could sit here and be perfectly content. Thank goodness I have obligations to my mama and my family!
Donna – I absolutely love, love, love your description of your disease, and everything else you wrote.
I can’t believe. Scratch that, I can believe that your doctor attributed a lump to sinuses. I am so sorry he did that. What lead you to figure out that you had thyroid cancer? What made you get a second opinion?
Your endo sounds endolicious. Love her, too.
Good for you. Pun or not, I love the attitude, kid.
xo
1) If you could describe the look and feel of your disease in one sentence, what would it say?
My disease is hard and encompassing, it divides and conquers me, it suffocates me, it robs me of life and living.
2) If you could say anything to your thyroid right now, what would it be and why?
Why you $%!#@#$%^&**(&%#)*^$@# AND #%()_^&&$#+@!%&( I am ANGRY and I am SCARED and I HATE feeling this way AGAIN. You took 21 years of my life (maybe longer) – too long, I got rid of you, your disease, your cancer; and now I swing from HYPO to HYPER and all that comes with that, but but but the real ass kicker — the lump that is growing in my neck once again;. WTF!?! I tried to ignore it, but it is getting bigger and it shouldn’t be there, and I am REALLY FREAKIN OUT ABOUT THIS!!! It will be 9 months April 15th; it’s bad enough to have the idea of “cancer†lurking around in the back of your head, but SON OF A $$%*(#)@)%^()@) THIS HAPPENS and you are thrown for a loop; once again! GAWD I HATE THIS!!! I JUST WANT TO BE WELL — I WANT MY LIFE — A LIFE — A GOOD LIFE;.
3) How many times were you misdiagnosed before you were correctly diagnosed?
Since 1989 — too many to count — began to get proper care and diagnosis, when doctor moved back to India — was sent adrift in a sea of “no it’s not†“well I believe it is this;†or “your fineâ€; til one day about 2 years ago;
4) Do you have a doctor you love? Please tell us why you love your doctor?
I found HER, the ONE, my endo who took one look at me and knew and moved like the wind to make whatever needed to happen to get to the bottom of what was going on with me, happen. And man she is not one to mess with or get in her way. She championed my cause, how I felt, what my symptoms were BESIDES what my body and blood work were telling her. She calls when she says she is going to — it might be 8pm at night — but dang if she isn’t on the phone giving me my results, asking how I am, how I am feeling, what we can do — Plan A and Plan B etc. She makes me believe I am NOT Crazy ;.. as for so many years I felt like I was.
5) Do you feel your disease makes you want to become reclusive? If so, why? What is it specifically?
YES YES YES — with little energy, low self-esteem, serious depression, I mean seriously why would I want to go out!?! Who would want to do anything with me? I didn’t leave the house for months — literally. And that became easier to do when compounded with back injury/surgery; ankle injuries (both of them), etc;. I mean my neighbors hadn’t seen me in over a year at one time; after my thyroidectomy I didn’t leave the house (except for doc appts) for almost 6 months. It takes too much energy to entertain and be entertaining (at that time, for me at least), I didn’t feel good, didn’t look good, just didn’t have the heart (or the guts) to face the world. Was easier to manage life from the safe confines of my home. It was my comfort zone, my safe place, where at least in that little segment of my world, I could control something. I mean – you had to have seen me… I didn’t want to “hang” with me!!
1) If you could describe the look and feel of your disease in one sentence, what would it say?
It creeps up on you like a thief in the night an robs you of your life, then it take most of your life to get back only part of what you lost.
2) If you could say anything to your thyroid right now, what would it be and why?
Why did you let me down, why did you confuse everyone even me, why don’t you come back and behave yourselfg this time you thyroid mother fooker, because your substitute is a crap shoot and could never take your place…..If Only?
3) How many times were you misdiagnosed before you were correctly diagnosed?
Lost count because I stopped going to the doctors took an optometrist to diagnose me I know she isn’t a doctor but I love her. And i will never forget what she did for me we have since become really good friends.
4) Do you have a doctor you love? Please tell us why you love your doctor?
In one word NO not at present but i have had in the past ones and ones I worked with for years And a few doctors who saved my life and for this I am eternally grateful
5) Do you feel your disease makes you want to become reclusive? If so, why? What is it specifically?
It did but not anymore no matter how i feel I have to be doing something I can’t be hemmed in.And my dog won’t let me be reclusive she demands her daily walks each day. My family make demands on me so I have no time to rest, no time for myself and no time to become reclusive.
1) If you could describe the look and feel of your disease in one sentence, what would it say?
It, ´s like a big dark shadow that is always right next to me.No matter where I go or what I do.
2) If you could say anything to your thyroid right now, what would it be and why?
The not so nice things I want to say to my thyroid right now would probably not be appropriate to post here.
So I am going to stick to the positive ones. “Thank you for making me realize that I have to put myself first,and for showing me who I can count on in my life.”
3) How many times were you misdiagnosed before you were correctly diagnosed?
I don, ´t even know how many times I, ´ve been misdiagnosed before.I really don, ´t want to think about it either.Way to frustrating.
4) Do you have a doctor you love? Please tell us why you love your doctor?
It would be great if I could say something referring to this point.So far my doctors were all morons.
5) Do you feel your disease makes you want to become reclusive? If so, why? What is it specifically?
What made me want to become reclusive was not the disease itself or the way it made me feel but more likely the ignorance from other people with which I had to deal on daily bases.
Chrstine – I AM SO PROUD OF YOU FOR VENTING AND RANTING AND EXTRICATING ALL OF THAT ANGER OUT OF YOUR BODY AND INTO THE WORLD. I know it doesn’t make what you’re going through any easier, Oh I know, honey child.
I am so sorry that you have to fret over a NEW LUMP; the terror you must be feeling, well I can’t imagine. I can say this, you don’t have to go it alone. We’re all here for you.
I love what you wrote. You will get through this, kid.
The reclusiveness — everything you wrote felt like razors to my heart because I relate that hard. I digress… I wish you didn’t feel that way.
The depression, the anger, it’s all consuming; thyroid related and as a result of desperately craving, yearning, pining for your life back. YOU WILL GET YOUR LIFE BACK, CHILD.
xoxoxoxo
Lolly — I absolutely love this: It creeps up on you like a thief in the night an robs you of your life, then it take most of your life to get back only part of what you lost. Speaking for myself, this encapsulates, so beautifully exactly what thyroid disorders and cancers do to us.
When Louie was alive, he anchored me to the world and demanded that I not remain as reclusive as I wanted, as your dog does for you. I do so wish that you had more time for you, to relax and take care of your sweet self.
Beautiful writing, Lolly – honest, eloquent and I’m thrilled to know that you’ve had good doctors.
xo
Christine — PS: So glad you have a great endo now. She sounds fabulous.
Christina – GREAT WORK, KID. I love your willingness and eagerness to stick to the positives. I adored your description of what your disease feels like to you.
Though you don’t have a great doctor now, hopefully soon you will find one.
When you say that going out isn’t related to your thyroid as much as it has to do with idiots; what do you mean? I’d love to learn more about this. Do you mean your friends?
Very proud of you!
xo
Hi Katie.
I meant people in general.Whenever you have to deal with people (new or friends) you get to the point where you have to explain yourself:Why you can, ´t eat certain foods,why you don, ´t have the energy to do certain things and so on.
I am done explaining myself.Staying at home sometimes just seems like the less stressful thing.
1)If you could describe the look and feel of your disease in one sentence, what would it say?
It feels like running head first into a brick wall and then having to get up and run a marathon.
2)If you could say anything to your thyroid right now, what would it be and why?
Screw you, you worthless piece of crap.
3)How many times were you misdiagnosed before you were correctly diagnosed?
Zero. I’m lucky. BUT, I think I had cancer for a LOOOOONG time before we found it. Once we found the nodule, I was diagnosed in three weeks.
4)Do you have a doctor you love? Please tell us why you love your doctor?
YES! Again, I’m lucky. He’s so very proactive in my treatment and he takes time to LISTEN to how I’m feeling. He ALWAYS asks how I’m feeling before he considers my blood work.
5)Do you feel your disease makes you want to become reclusive? If so, why? What is it specifically?
Yes. Sometimes it’s hard to be around people who don’t understand what I’m dealing with, so it’s easier to not be around people. I’m getting better at dealing with that, though.
Ah, Christina, I see what you’re saying. How do you/we eventually find a way to explain it so it doesn’t feel like a chore? This is something I ask myself all the freakin’ time.
Part of our collective journeys, I think, is to reinvent ourselves, which includes that. Like you, I haven’t found my way with it.
Joanna – The brick wall metaphor was spot on, thysistah. Just wish you didn’t feel that way. I get it.
How long, and what makes you think you had cancer long before diagnosis?
So happy you have a great doctor. I think having good doctors is so much a part of our healing process. Even though they are far and few between, the good ones should be celebrated, yes?
How are you getting better at dealing with it? If you’re comfortable sharing, I’m always up for learning something new.
Good work, kid.
xo
1) If you could describe the look and feel of your disease in one sentence, what would it say?
A hazy glob of mist waffting through the empty caverns of my brain!
2) If you could say anything to your thyroid right now, what would it be and why?
I miss ya(!), but I had to evict you!!
3) How many times were you misdiagnosed before you were correctly diagnosed?
It always seems to be a “harmless” cyst with me. Benign thyroid growth they said. Ha!
4) Do you have a doctor you love? Please tell us why you love your doctor?
My current endo listens to what I have to say! The old one did not.
5) Do you feel your disease makes you want to become reclusive? If so, why? What is it specifically?
So some extent yes. Crawling up for a nap is a way to withdraw, and to get the sleep I seem to need in the afternoons. Argh.
HD in Oregon
1) If you could describe the look and feel of your disease in one sentence, what would it say?
Evil, sneaky, destructive, life-sucking, fire burning entity, that can’t make up its mind what to do to me.
2) If you could say anything to your thyroid right now, what would it be and why?
I would ask it – Why did you take most of my life to choke me and make yourself known? You would have saved my body from so much destruction and suffering, and I would not have been kept from LIVING! Then I would tell it, fuck off…I’M IN CHARGE NOW!
3) How many times were you misdiagnosed before you were correctly diagnosed?
I could figure it out but I don’t want to because I have to see the consequences of all the misdiagnoses every freakin day and somehow, not acknowledging the number to myself is one less negative thought, but it was far too many.
4) Do you have a doctor you love? Please tell us why you love your doctor?
Oh yes, finally I do and I’m so relieved and grateful but I haven’t had her very long and I’m so afraid it’s a dream that I will wake up from! My new hormone specialist has Hashimoto’s like me. I didn’t know that before I met her. The first day I met her, she came into the waiting room herself to get me, introduced herself by her first name and drew my blood herself. I already loved her just for doing those things so kindly and sincerely, but she took 90 minutes listening and explaining things to me, and let me write everything down. She knew the right tests to do and never rushed me for a second. Pinch me, am I dreaming??? If anyone is in the Boston, MA area, and needs a great one, send me a message and I’ll give you info. My primary care physician is also very supportive.
5) Do you feel your disease makes you want to become reclusive? If so, why? What is it specifically?
Yes, I know it well, and it’s almost worse than all the rest of the crap this dis-ease has caused. I don’t like what I’ve morphed into and it’s painful to walk and do things from the joint and nerve destruction, but I still hate facing people and what they might say or just as bad, the stares. It just seems safer and easier to not put myself out there.
Katie–
Thyroid cancer is usually a very slow growing cancer. Most of the lymph nodes removed during my thyroidectomy were malignant. So for the cancer to spread to all those lymph nodes makes me think the cancer was in there for quite sometime. Also, I found a picture of myself that was taken seven years ago, and I can see my thyroid bulging out of my neck! How I missed it, I don’t know! So I think my thyroid was jacked long before I knew it was jacked.
I am doing better being around people because I’ve come to understand that they don’t understand. Does that make sense? I know that they don’t understand what I’m going through. And while I want my friends and family to understand, deep down I don’t want them to understand because that would mean they, too, have thyroid cancer. So now, instead of focusing on the fact that I am surrounded by people who don’t understand me, I TRY to focus on the fact that they are just surrounding me…they’re supporting me and loving me. And that helps me be less reclusive. It’s a work in progress.
xoxo
little late but…
1) If you could describe the look and feel of your disease in one sentence, what would it say?
I’d rather have an ugly scar than a lumpy neck.
2) If you could say anything to your thyroid right now, what would it be and why?
Right side, I don’t miss ya.
Left side, you were there for me all along-just keep on keepin on.
3) How many times were you misdiagnosed before you were correctly diagnosed?
How many grains of sand on the beach?
4) Do you have a doctor you love? Please tell us why you love your doctor?
yes! her name is Magheeda Mikhail and her practice is in Mineola, Long island, NY
She is thorough, she cares, and she answers all of my hysterical questions.
5) Do you feel your disease makes you want to become reclusive? If so, why? What is it specifically?
Not really-maybe my experience will help some other poor sufferer.