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The Floor Is Yours: Ask Each Dear Thyroid Team Member Anything You Wish
What would you like to know about Katie, Joanna, Melissa, Nicole, David or Tony? Anything goes – from disease to relationships, to favorite China patterns. The floor is yours, Dear Thyroid Community. You share so much of yourselves with us, that we wanted to ask you if you had questions about us.
Ready? Set? Write.
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44 Responses to “The Floor Is Yours: Ask Each Dear Thyroid Team Member Anything You Wish”
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I would, of course, like to know what thyroid disorders you all have and what you are doing to cope.
Hi Elaine!
I have papillary thyroid cancer. I was diagnosed in October 2008 and since then I’ve had two surgeries and two treatment doses of RAI. I’m still not cancer-free but maybe one day I’ll get to hear those beautiful words.
Until then, I’m learning how to cope with cancer. To do so, I learn from other people who have walked this road. I participate in online support (including Dear Thyroid, of course) AND offline support. Both are crucial for me. I read books about living with cancer. I keep a journal. I talk about my experience with cancer. I find people who I can relate to. I’m fortunate to have a wonderful family who supports me through this. I’m also fortunate to have a few friends who have stayed with me as I’ve dealt with cancer.
I have a wonderful endocrinologist. He and I are very much a team, and that makes coping with cancer, hypothyroidism (I no longer have a thyroid), and hyperthyroidism (I’m in a medically induced hyper state) a bit easier. Not easy, but easier.
Hi Elaine,
I have Graves Disease, I was diagnosed in 2008, and just recently had RAI done at the beginning of this year.
I’ve been to at least 5 endos, pissed off countless friends, and felt a range of emotions I haven’t ever felt in my entire life. The hardest part of this disease has been fighting the good fight alone, for the most part. I wish I’d heard about this community sooner, because I had no one who could empathize with my situation. People might have tried, but I was still *blamed* for situations that arose out of my erratic behavior. It sucked, and it still sucks to find out people you trusted to have your back actually don’t.
I cope today by writing, being a photographer and living life honestly. Because I’ve been through this disease I have less fear than I did before, especially when it comes to expressing myself artistically.
Thank you for your question,
Nicole
Hey Elaine!!!
hashimotos and thyca.
Everyone else does so well with coping that I sit around wearing brass knuckles and shank people with skivvs. PURE UNADULTERATED HOSTILITY AGGRO STYLE. Occasional flying side kicks to the unaware back of the head.
aka sense of humor. Crying fits. Going to counselors. Going to way to many doctors.
Why don’t you tell us a litle about your favorite kind of music, to your hobbies and your fasvourite sexual positions you did say anything goes:-)
Have I missed someone who is David tell us a little about yourself like are you married have any kids, thyroid status or not are you related to Joanna if so in what way and when did you join I must have missed it. Welcome aboard so many changes I can’t keep up with it.
Lolly–
My favorite music artist changes all the time. My current favorite is Jason Mraz. I also really like John Mark McMillan, NeedToBreathe, Kutless, and Hootie & the Blowfish to name a few. I do NOT like country music.
My hobbies–I LOVE sports. I really do. In my closet you’ll find golf clubs, a racquetball racket, a tennis racket, basketball shoes, running shoes, and a rock climbing harness. I also love to watch most sports. I’m so excited that college football is about to start. I’m a DIE-HARD fan of the Clemson Tigers–I have orange blood. (Clemson’s colors are orange, purple, and white.)
I also love to read. Seriously love it.
Oh, and David is my youngest brother.
🙂
Hi Lolly,
My favorite type of music…is classical. Chopin is my dead boyfriend.
My hobbies include photography, writing, and people watching.
My favorite sexual position is any position where I’m holding the whip.
Take care,
Nicole
Lolly-
Like Joanna said I am her younger brother! I don’t have any thyroid problems, but I know a lot about it and what it can do because of Joanna. I just started my fourth year at Valdosta State University and I am 21 years old. Thanks for the questions, Lolly! It has been about a week since I have joined the team and I am excited about working with these people. Even though I go to Valdosta State, my true blood runs orange. Go Tigers.
Lolly-lol!
Music – love lots… mostly old school garage rock… alternative stuff. I like it when I hear it. Lots of Brit rock. I know -you have better music. If it’s the radio here I probably dont like it.
hobbies- love to sail haven’t for a while, knit badly, terrible bass player, sit around twittering pretending to write, slouching, improvisation, stand up comedy, going to doctors, getting diagnosed with horrific illnesses, collecting shoes, WAY INTO GODZILLA AND COMIC BOOK TSHIRTS. total geek, love sci-fi, dr. who, and most things vampirey and smutty. meow.
sex position —the one that doesn’t involve a toy inside my top dresser drawer? Really– I’m into spanking… I watch way to much spanking porn… writing my book on adult sexual spanking.. I guess the secrets out eh? But yah — Sex position includes YES PLEASE – PUT SOMETHING IN MY VAGINA STAT.
OMG, these questions are FANTASTIC. Katie here…
Elaine – Graves disease. Coping strategies: pre-diagnosis, like far too many of us, I was being misdiagnosed left and right, and given tons of scrips for a disease they didn’t know I had. Of course, this served to exacerbate my illness. When I was finally diagnosed with GD/GO, I was completely and utterly panic stricken. I didn’t know what the thyroid was, what it did, much less anything about autoimmune diseases. I was operating at a severe deficit and didn’t know where to turn.
Fortunately, I found Mary Shomon’s website, thyroid.about.com and learned that I wouldn’t die. This made me feel a lot better. I bought many of her books, voracious read her articles and tried to educate myself as much as possible.
Sadly, all of this turned to shit faster than you can say boo, because when Shmendo 1 put me on Tapezole, I had a severe adverse reaction to it. It accelerated my disease x10 and within a year, I became thyroid psychotic and borderline thyrotoxic. Upon diagnosis, I also started writing scathing hate letters to my thyroid, hundreds of them.
I required an intervention to save my life. Every psychiatric and physical symptom you can imagine, I had, and in droves.
In the past 10 years, I have only experienced an in range thyroid for 7 months, yet I wasn’t losing weight and I was still experiencing physical and psychiatric symptoms, quite moderate. Frustrating to me – I wanted to get on with my life. I started focusing on nutrition and getting my antibodies reduced. My theory has been that, and this is just MY THEORY, if I have an autoimmune disease, I will have it for life. However, if I can get my antibodies to undetectable, imagine how great I will feel?! I say this because just a small drop in numbers has RADICALLY improved all symptoms: mental and physical, so totally, that I am back into my life again.
I cope with my disease by reading others stories. I cope with this disease by arming myself with enough information to ask the right questions. I cope with this disease by connecting the dots myself and fighting for what I want. In fact, now that I’m on Shmendo 6, the relationship is good, to be sure. It’s to the point where he just hands me the blood work form and says he’ll sign it. Why? I change it anyway. I add things that I want to be tested for. It’s become a very collaborative working relationship, and he’s quite brilliant.
Each of you get me through the day. Each of you remind me why we need a cure. Each of you inspire the hell out of me and make me want to work my ass off for better treatment, education, awareness and funds for a cure for autoimmune diseases and cancers.
Katie,
Thanks for sharing your story. I am coping by reading others stories as well and it helps more than I ever thought possible. Also, thank you for posting about Mary Shomon. I have quite a bit of reading to do!!
Jill
Jill;
I am so glad that you are finding solace in reading others letters. I want you to know that if/when you ever want to write/submit your own, please go for it! (submissions@dearthyroid.org).
Mary Shomon is great. buy the book LEARNING TO LIVE WELL WITH HYPERTHYROIDISM and start reading her site, http://thyroid.about.com. She also offers thyroid coaching sessions. With everything you have going on and all of the miss-information you’re receiving, I would love to see you work with a team that is BEST SERVING YOU.
anything I can do to help, I want to do.
Katie
I second this recommendation.. This book is my constant companion. It has more bookmarks and post-its than it should… but I love how much it has helped me.
Amanda
Amanda; SO TRUE! I agree. if I highlighted any more pages yellow, surely the book would become yellow at this point.
Lolly – I have such eclectic taste in music: Joni Mitchell, Alicia Keys, opera, Eminem, Vintage TuPac. Diane Krall. On my ipod you’ll find a thousand different snippets of music that don’t make sense.
Favorite sexual position – LOVE BEING ON TOP. Har.
Great questions!
xo
K
My question is to Katie:
You’re such a bundle of energy, Updating DT each and every day. How do you do it? What’s your secret potion?
HD
P.S.: I’m not surprise about your favorite position. You’re a top-kinda-girl.
🙂
I do scream top, don’t I?! HD, I am motivated by change – OUR NEED FOR CHANGE. And by the stories on Dear Thyroid. These aren’t second hand stories; these are stories written by you and so many others. I want all of us to be part of the solution and become the change we seek. This is what motivates me and drags my ass out of bed every day. I believe in ALL OF US. I believe that WE DESERVE BETTER.
My question to you all would be-
How do you deal with the times you can’t keep up with your family and friends? Have you had any issues with family or friends unable to understand? Have you had anyone think poorly of you because you weren’t as social as you were before getting sick?
Thanks for this post!
Jill
Hi Jill,
I have had countless friends sit me down to talks about my attitude while I was sick. I have had people react to my reactions. I internalized all the guilt, even when things weren’t my fault – but it was easy to point a finger in my direction.
For some reason, people instinctively know how to exploit someone who is sick and at their most vulnerable – yet they don’t see it as exploitation for their own purposes. You get approached for a blatant “weakness” that reflects your “character” as a person (not really fair when you’re sick) and it is supposedly their job to bring it to your attention, and your DUTY to fix it. I think sickness in others gives people the sense they can justify their own actions and deflect their flaws onto you to take advantage of a situation. Whether it’s maliciously done, or instinctual – it’s still wrong. Hope that makes sense, since it’s been my own personal experience.
This is some of the shit I have dealt with while being ill.
xoxo,
Nicole
Jill, this is a really good question and a really hard one for me to answer. I’ll start by saying my immediate family has been wonderful. Of course they don’t understand what I’m dealing with, but I also don’t understand what they’re dealing with watching a daughter and sister go through cancer. But they’ve been great.
The friends question is hard for me to answer, because I don’t know how to handle it. I have friends who treat me differently now. They see my cancer instead of me. And I do not know how to deal with it. I know what I want to do–I want to get to the point where if they can’t deal with my cancer, that’s okay. I want to be okay with the fact that they don’t know how to even begin to attempt to be a friend to someone with cancer. I want to accept that, while they will never be my best friends if they don’t walk this journey with me, it’s still okay for me to hang out with them. I’m not there yet. I don’t want to see them. I don’t want to talk to them. But I do want to work past that.
I will also say I have a small handful of friends who get it. And that’s a gift. It really is, and that’s what I need to focus on–being thankful for those friends who are still here for me rather than being angry at the friends who aren’t.
Hi Jill;
Family and friends… I was out of their life when I was psychotic; not entirely, just enough to know that I missed too much. I am heartbroken about the time we lost together and the pain I caused them. What I do, is request that they tell me what it was like to live ‘without’ me and how that impacted their lives. It’s been a very healing, slow worthy endeavor. I felt guilty for a long time, but it didn’t serve me well.
Hells yeah, girl. I lost a lot of friends and family because they didn’t get it. They didn’t even care to. When they tried; they were insulted by my inability to give them what they needed. Interesting… “give them what they needed”. What about what I needed? Why hadn’t that factored into the equation? I know that now. I didn’t then.
YES. YES. YES. I was considered socially retarded, inept, unpredictable, embarrassing and annoying to be around.
Let me say something, Jill, there comes a moment when you are on your way bakc to yourself, and you’re physically and mentally feeling well; strong even. suddenly, you feel so in charge, that you realize what and who are most important – That, my sweet, is a wonderful day, and a day worth fighting for.
I have lost an enormous number of friends to being sick… and when I cannot hang or be with my current friends I just say so. My family has come to understand and my current friends as well. However, I have learned a fancy trick of HUMOR mixed with HONESTY. I’m not as whiny about it. I generally say, “I’m staying in to organize my sock drawer.” When what I’m doing is sleeping.
What I will tell someone who UNDERSTANDS – like you or someone HERE – is, “omg -sick as dog- slept all day- blahhhh”… get it. I don’t dish as much to people in the “outside world.” I just dont share all my cards anymore. They don’t understand and so I meet them half way and I no longer try to make them.
Joanna,
Sorry to hear that you’re still fighting the cancer monster.
Don’t you hate the word “uptake”? (I know all about it, heard it too).
Hang in there! Next body scan there won’t be an any uptake, and you can call yourself cured. (That’s what my Doc said).
My question to you is, who is the other woman on your FB profile photo?
HD
My sister. 🙂
This is so nice, but I feel like I “know” you all already! I wrote a thesis about color theory once, so I really would like to know what are your favorite colors and why?
Amanda
Hey Amanda,
Oohh, I’d like to know what my fave colors say about me.
I loathe pastels, so all the colors I mention will be in the most vibrant shade.
Pink/Magenta – Always loved pink, and I really don’t have an explanation. I love to wear all black with bright PINK shoes – or…
Red! Red shoes with all black.
I also love TEAL. Teal is just a fun color that perks my spirits up.
Orange used to be one of my fave colors, but it’s taken a backseat.
Green. Green is beautiful, and I love green landscape. I prefer the woods to the beach.
So…I guess I have a lot of faves, but I can’t settle on just one.
xoxo,
Nicole
Orange, because it’s the color of the Clemson Tigers. I grew up cheering for the Clemson football team. My parents went to Clemson. Except for one black sheep (ahem, David), all of my siblings went to Clemson. I went to Clemson. I just love the school. And the color orange.
Amanda, color theory? I’d love to learn more about that.
My favorite colors are black, burgundy and fire engine red, though you will find vintage earth tones throughout my house. I never wear red. I must have at least 1-2 red pashminas. I just won’t wear them. Mostly, I wear black, love black and grey clothing.
Amanda,
I LIKE pink. I WEAR reds and blacks. I think green is pretty.
I’m a very contradictory person… All princess on the inside bitch whore on the out.. yah? rad right?
xx
Meow
I know Katie, Joanna and Nicole’s thyroid stories, and it was nice to hear about other parts of your lives outside of dis-ease!
David – what is your role on DT and do you have a thyroid disease too? Sorry, I’ve been very busy and dealing with computer issues and more pain than I have in quite some time, I must have missed the post when you came on board.
Melissa – I know you have multiple illnesses that you are dealing with but do you mind me asking what are they? I think I remember reading you have thyroid cancer, but forgive me if I’m wrong about that.
Thank you all for answering questions.
Hi Lori;
I’m sure David will chime in soon, but he is our newest SM intern. check out his bio here: http://dearthyroid.org/our-team/david-isbill/ – Great kid.
Loves,
Katie
Thanks Katie – got it.
Hey Lori!
I am doing a social media internship for DT. No I don’t have a thyroid disease, but Joanna is my sister so I know the impact it has on a family. I know first-hand the damages that these diseases can do to an individual just from spending time with Joanna. Like Katie said, check out my bio!
Welcome aboard, David! So many of us are not supported by family or friends the way we need and many disappear, so I’m glad to know you are there to support Joanna.
Lori – yes, I do, I’m actually still being treated for a number of cancer bullshit thingers. I don’t talk about it a great deal as it is UNPLEASANT IN THE MOST BULLSHIT CLUSTERFUCKERY TYPE OF WAY and it is a PROCESS and I find out in 2 weeks what’s the haps and and give them more samples and then find out more after that… they so love to make you wait, right?
meanwhile – I have a lovely excel spread sheet of auto immune illnesses as well…
google search them and pick the top six and pretend they are mine. I’m annoyed right now dealing with them all. It is not going as well as I would wish. Please forgive me. I’m not all pep and sunshine right now. Even a tiger sits in a cage surrounded by disease sometimes. Diagnoses can blow me. Treatments can blow me. I take 30 medications and the cost to me this month alone was $700 AFTER INSURANCE. My most NECESSARY medication was discontinued by my insurance and now I have to get my doctor to tell the insurance that it is medically necessary… along with the air I breathe you know.. and my lungs, and my blood, and my lady jizz. (I personally find my lazy jizz MANDATORY, FYI).
Melissa,
I have several autoimmune disorders as well and share your frustration. Im sorry you are in a rough spot because I am there frequently myself. After reading all your responses to everyone’s questions I have to tell you that I absolutely love your take on things and your sense of humor. Not afraid to speak the nitty gritty truly on your mind and I LOVE IT! I have tried mixing the humor in with the honesty on a couple of occassions and I think its awesome advice. People seem to be more receptive that way. Of course, there are always the few choice people that aren’t worth the time anyways.
You made me laugh out loud for the first time in a while. THANK YOU!!!!
Keep you head up and keep us posted.
Jill
I’m new and have MANY questions. The uptake scan showed hot and cold nodules. None are very large, but there are so many of them and such a variety that none of the docs have bothered to count. The uptake also showed hyperthyroid even though the blood labs are within normal limits. I have hyper and hypo symptoms, cervical lymphadenopathy confirmed by MRI, and my sore throat feels like there’s a pill stuck.
None of the docs seem to want to put any labels on this mess, but they keep throwing terms around. Is multinodular thyroid and toxic multinodular thyroid the same thing? I’m just waiting for labs to come back so they can cut my “dear thyroid” out of me. From what I understand the radioactive iodine is standard if it’s malignant or not. Is that true? I’m living on caffine for the 12-14 hours a day I can stay awake. Is there anything else I can do for now to help myself function??? OH OH OH And is there any hope of loosing this weight once I’m thyroid-less and on meds?
I don’t have a favorite color because I enjoy playing with them all. I design and make clothing, costumes, & accessories when I can stay awake long enough. The color loves change with my thyroid’s mood. Music is everything from rap & hip hop, 80’s pop, to Melissa Ethridge. 🙂
My question is directed at Joanna… Is Ware Shoals the very best place on the entire planet? Oh, and will you tell Scrouge Eye I said hello? Thanks. 😉
For anyone who cares to answer: Let’s say your disease or cancer is very prominent in your mind/thoughts/life… is there anything–a moment, a ritual, an experience–that allows you to completely forget about your disease/cancer?
I have thyroid cancer, and I can only think of one true moment of complete happiness when I did not even consider the fact that I have cancer, because I was so in the moment. I wish I could live that moment, that feeling, again and again.
I cannot say that Ware Shoals is the very best place on the entire planet. It is a teeny tiny town in SC that is known as the home of some of the greatest nicknames EVER, including Scrouge Eye (whatever that means). I’m so sorry to say that I do not know Scrouge Eye personally. Other awesome nicknames from Ware Shoals: Pickerstick, Cooter, Possum, Three Toes Crawford, Algae, and the list goes on and on and on.
To answer your deeper question:
I have very very brief moments where I forget I have cancer, but in almost two years there has not been a day where it has not crossed my mind. I hope there are days in the future where I don’t think about cancer. Until then, I’m learning how to live alongside it.
Welcome aboard David have you been intiated into DT properly yet? Joanne you have explained everything to your little brother, does he know what to expect is he shy? 🙂
It’s great that you understand so well what thyroid cancer can do to a person especially a close member of your family. and it’s fatnastic that you are there with your support too many realtives of patients donlt alswys get it and the fight the fight alone.
Joanne keep on fighting you will beat this thing.
Katie now how did i know you were a top gal with Nicole into S&M and me well I have a wide taste in music too.
Great answers from everyone I have more questions for all of you tomorrow or today as it is that now watch this space.
Lollyxoxo
There seems to be (at least to me) an epidemic of sorts of thyroid disease going around… at least in my social circle. Several women I know in their mid-30s all have been diagnosed with thyroid disease in the last couple of years. Do you have any sense that the rates of thyroid disease in the general population is increasing? Or, possibly, it seems to be increasing because of better detection? Or is this all coincidence for me? Perhaps one of the team has seen some recent research or numbers or something… I’m just curious.
Lack of iodine?
Mike – I agree, there does seem to be an epidemic of sort. There definitely is a rise in thyroid diseases and cancers. However, in my opinion, this is NOT because there is better detection. In fact, many suffer for years before being diagnosed properly. Although there are tests available to properly diagnose people in a timely manner, the routine tests done today are inadequate and do not show the whole picture, which leaves far too many not being diagnosed.
Here is an article that touches on the incidence of thyroid disorders: http://www.ehow.com/facts_5526173_incidence-thyroid-disorders.html
I was diagnosed with hyperthyroidism in September following lithium toxicity. I will never know for sure if that caused thyroid disease or not but I know there’s a possibility it may have. I had originally hoped to learn as much as I could about the condition and shocked to see that there really isn’t a lot of info out there for hyper patients 🙁
I’ve dealt with heat intolerance, hand tremors, palpitations, nervousness, SOB, and now extreme fatigue and painful right calf pain that sometimes involves the back of my knee.
I’m so fed up with feeling this way. Hubs suggested I find a group and so glad to have found your site! Thank you!