Posts Tagged ‘Thyroid disease support’

Chicago Dear Thyroid Meet-Up

dearthyroid | February 11th, 2010 | 2 Comments »

Dear Thyroid Chicago Meet Up

Local Chicago Dear Thyroid Meet up hosted by Jennifer Jennings

Last Saturday, three Chicago area thyrellas met at a local coffeeshop to share our thyroid woes and have some laughs. We snagged a table in the back of the shop, which provided for some perfect people watching.

I was delighted to first meet Gaye and then Lisa. We shared information about our conditions and bonded over some of the most annoying thyroid symptoms: feeling freezing and sweating or being hot when it’s 20 degrees out, etc. We also talked about how good doctors are difficult to find. Lisa is very lucky to be seeing her childhood doc who notices historical trends.

Our conversation wandered to our lives and what we did professionally. The coffee was great, as was the company, and we plan to have another Dear Thyroid meetup within the month. If our busy schedules allow for some coffee and conversation. We hope that more will join us.

it was good to meet people going through similar experiences in person. Although I wished that there had been someone there with Grave’s, because the experience is a little different than hypothyroidism/Hashimoto’s.

But, I found it to be an enjoyable, fun, connecting experience.

-

Who lives in Chicago and would like to join these lovely thyrellas for the next Dear Thyroid meet up in Chicago? Leave your response in comments, add your location to the forums or email Katie.

Dear Thyroid Meet Ups & An Awareness Contest!

dearthyroid | January 11th, 2010 | 7 Comments »

Dear Thyroid Meet Ups and An Awareness Contest

This is going to be an exciting post, filled with lots of activities and things for us to do for offline support and to champion our goals for awareness! Are you with me? Are your glands twitching in anticipation?

Local Meet Ups

Thyrellas and Thyfellas, the Dear Thyroid Local Meet Ups are in full swing again. If you don’t see your city listed, please let me know and I will be sure to add it. Similarly, if you are interested in hosting at a coffee shop, organizing or anything else, please email Katie, here, here and here. I will help orchestrate all offline Dear Thyroid Meet Ups and we’ll get them listed in the official Dear Thyroid calendar, so we can invite others in your area to participate. So far, we’ve had three, two via phone and one in person. Read about the Pembroke meet up and the International Teleythone meet up, but illustrate, so poignantly, the importance of offline support and connecting with other thyroid patients and how cathartic their experience was.

My hope is that one meet up begets monthly meet ups and ultimately ongoing support. As you know, I believe so hard in offline support, as much as I believe in online support. Don’t be shy. I mean, you can be shy. Kindly remember that you aren’t alone. Connecting with patients who understand what it means to have a thyroid disorder or thyroid cancer can be a deeply enriching experience for all of us, evidenced by the above posts.

Dear Thyroid Awareness Bracelets

Thyroid-Awareness-Bands-Thyroid-Disease-Awareness-Thyroid-Cancer-Awareness-300x63Forgive the poor quality picture. We now have Dear Thyroid Awareness Bracelets for FREE!  This is our gift to you from Dear Thyroid, Katie, Liz & Robyn.

The color is within the autoimmune family, a blue-ish, gray-ish purple-ish.

(Side One) DearThyroid.org (side two) Invisible No More™ (Liz Schau created the slogan, we love it and we hope you do, too.

Bracelets are available now! Click to find out more about them. If you want one, please email Katie and provide me with your mailing address. Please specify which bracelet you would like.

Blogger Outreach – Awareness Contest

To continue our effort in raising awareness, we are asking our dear, dear, dear thyroidians to please help us with blogger outreach and do the following. Winners receive a free bracelet!

  • Comment on 5 health related blogs, whether they are about thyroid disease or thyroid cancer and ask them if they have considered writing a post about Thyroid Disease and how ’sexy’ this disease is. You can even offer them a link to these statistics, “Full Lips, Curvy Breasts and the Tightest Little Thyroid You’ve Ever Seen“.
  • You can post on behalf of Dear Thyroid or independent of Dear Thyroid, whatever you wish. The goal is to create awareness.
  • Our goal is to reach 50 bloggers over the next 60 days and bring ’sexy’ to this disease.
  • Dear Thyroid will write an article for them, which is something you can offer the blogger, or you can write an article, whatever is easiest for you is great for us.
  • For all the people who reach 5 health bloggers, we will send FREE bracelets to in gratitude for your efforts in outreach.

Are you with me? Are you ready to spread awareness on behalf of the 13MM undiagnosed patients; on behalf of the 50MM struggling with this disease, and on behalf of thyroid cancer patients and survivors (a type of cancer that is growing at an alarming rate)?

Once you’ve hit your goal of 5 blogs, email Katie with your mailing address and the type of bracelet you want and consider it sent!

Vote, Vote, Vote

I wrote a post recently titled “It’s Not About Me, it’s About We. Dear Thyroid has been nominated for a ShortyAward. The reason why I have a massive hard-on for this, is because it’s a wonderful opportunity to continue our grassroots efforts to — wait for it — spread awareness. You can vote every single day! In the above mentioned post, I wrote about all the different things you can say regarding why this is important to you.

With that, I am off like a prom dress!

Love,

Me

Thyrants, December 12-19

dearthyroid | December 19th, 2009 | No Comments »

thyrants december 12-19

Twitter:

@Yodat Forgot my purse twice today! Thanks thyroid!

@Yodat I am having a war with my thyroid – so far I think it’s winning = motivation gone!

@EyeceKnits Increasing my dose of vitamin D3 feels exactly the same as upping my dose of levothyroxine. Ice cream headache and all.

@christinah84 Yuck. I guess that sums it up.

Facebook:

Pamela Lau OMG, I feel SO fucking nauseous right now! I think it’s from being hungry too long. My appetite gets weird every now & then & nothing tastes or sounds appetizing. I also feel like I’m on frickin’ Effexor withdrawal. As if the daily symptoms of thyroid disease weren’t bad enough, I feel like I want to die right now!!! I… don’t know if I want to throw up or shit! UGH!!!! WTF!!!

Duana Jorden How is it possible to run for an hour or more every other day and still pack on pounds?????? I am vegetarian and eat only veggies, Mr.

Robyn Davis Hahn I have a thyaise. Thank you thank you thank you Levoxyl for restoring my libido.

Lori Caprio Callahan WTF – I want answers. Sick of being a patient patient. I’m begging more than ranting.

Pretty, pretty please let me sleep a full 8 hours but most of all, let me keep my eyes open, focus and not feel like I’m lost in space, stop making mistakes so I can work. I’m fucking desperate, do you hear me. It has now been 3 weeks, I think, since I have driven out of town. The shit’s hitting the fan and the bottom is falling out from beneath. If my son wasn’t laid off from work, the bottom would already be gone. I’m loading up on protein and veggies. If I didn’t do that, I think I’d sleep 16 hours a day. WTF? What am I doing wrong? What else can I do? I think my brain is turning to dust and blowing out my ears.

Lori Caprio Callahan Oh oh baby, I’m all set now. My husband forced me to eat a piece of pizza tonight (I much rather blame others), now there’s a brick in my gut, a tight band around my head (but it’s a real pretty one), and I feel like I’ve been puffin funny stuff. I’ll have no trouble sleeping tonight. Glad I got one thing solved. I feel so much better!!!

Lori Caprio Callahan Eh too bad ;( so much has improved but why is my mind still so bad? And the sleepiness… It’s not just brain fog, it’s memory too. I can’t joke my way through it any more. Too many mistakes. Are these the issues more T3 is suppose to help? Am I fighting for the right thing with my doctor who knows less than I do?

Always have to try and end with a positive note. Mary Shomon wrote a WODERFUL letter: “When Your Family Member or Friend has Thyroid Disease”. She did an awesome job. I posted it here it’s just a little further down on the page. This letter may have saved my marriage!

I printed it out and had my husband read the part that pertained to me. I think he finally “GETS IT”. It’s a good thing cause I was seriously thinking of hanging up that chapter.

I went one step further and put it in a note and published it on my wall for everyone to see. Wonder if anyone will read it?????? Pretty bad when I have to muster up courage just to do that, ha….:)))

Joanna Isbill Went to a Christmas party last night for my dad’s work. Lasted about an hour before I was ready to hit the dusty trails and climb into bed. And I was the youngest one there. Sweet.

Annie Rz I now bask in” less stress holidays”- after childhood (and beyond) years of family turmoil, it is nice not to feel the need to “do this, do that, cook this, buy that-go here-go there, mediate a fight!” Boy I am tired from just thinking about that!

Susan Valvo Smart ass! Get your butt home! This isn’t funny! We need you here!

Thyairy Tale

dearthyroid | December 16th, 2009 | 5 Comments »

Kathy Taylor, Thyroid Patient, Thyroid disease support - Dear Thyroid

Setting: It’s 12:59AM, and the classroom is filling with special needs endocrinologists. (You know the ones who do not provide THE BEST care for their thyroid patients.) It’s time for them to live in their patients’ shoes, even if just for a little while. Thank you for coming to observe the class. You may have some pointers to share with the ’students’ later on.

“Come in, come in. Take your seats, class; we’ll get started as soon as you are all sitting down”

“My, this is a big class!  Well, anyway, Good morning. My name is Sistah Thyresa and I will be your teacher, your guide for this class. I know that it’s very early in the morning, in fact it’s just barely morning, but you are going to be experiencing many things that your patients go through, so get ready, it’s going to be a busy class.

“First of all, let us stand for the Pledge of Thylegiance, “I pledge I don’t hear you…”

What do you mean, you don’t remember the words? Oh, all right, sit down. Let’s work on some math. (Groans in the back of the room)

No moaning back there; get out a pencil and paper. Okay. Little Johnny gets a penny for his allowance starting on Monday, two cents on Tuesday, etc. How much money will he have on the 16th day? On the 21st day?

(Mumbling, muttering, no one is raising their hand with an answer) “Can’t anyone figure this out?! It’s simple math!

Shirley raises her hand, “I have some extra credit; I did a time line all about me”.

“I don’t care about that, Shirley; in fact I don’t want to see it at all. All I care about is what these test scores say, right here (Sistah Thyresa is pointing emphatically to papers on her desk). These test scores say that you are fine! I don’t even know why the heck your here! Sit down!

Mark in the back corner is shivering, raising his hand. “What is it Mark? Oh, you’re cold. Too bad. Go get a sweater from your locker, and come right back. Hurry up!”  (While Mark is cold, other members of the class are sweating bullets)

“John, Lucy, Amy over there, if you’re hot, take off your lab coats, for goodness sake, don’t just sit there sweating like pigs. What am I to do with you?”

“Let’s take a snack break so that I can get my wits about me”.

Take out your snacks. I need to see them. If they contain gluten, dairy, or if they have goitergenic properties, into the waste basket they go.  “How many people have milk and cookies? Uh oh, into the basket they go.”

“Lucy, that raw broccoli and dip looks healthy, but, nope, into the basket. Give me the strawberries young lady. Is that coffee caffeinated, mister?”  (Sister Thyresa writes HOMEWORK on the blackboard)

List 10 foods that are OK for persons with thyroid issues to eat.

Here is your first assignment for homework. Don’t worry there will be more to come. No one leaves this class without learning something and without having to learn more.

“John, why are you tapping your foot like that? Restless legs? Well, why don’t you get up and tap dance for the whole class? That will get out some of your restlessness”

In fact, class, let’s get ready for some ’show and tell’.

(Each student prepares to share something with the class).

“Okay class, we haven’t got all day. Let’s begin. Amy?”

Amy stands and begins to tell the class about her pet beta fish and how it died and made her sad. Sister Thyresa interrupts. “Amy, that’s sad, yes indeed, but enough, we have others to listen to. Thank you, sit down”.

Mark in the back raises his hand, then comes to the front “I participated in a triathlon recently” Sister Thyresa says, “How nice, let’s move on. Sit down”

After a couple more students attempt to participate, but get little response from Sister Thyresa, no one raises their hands anymore. Their long faces give away their feelings.

“Well, why so glum everyone?” asks Sister Thyresa.

“It’s apparent from the looks on your faces that you don’t like the way that I’m conducting this class. What do you want me to say? What more do you want me to do?”

Lucy, speaking quietly, with a little choking sound in her voice responds, “For a teacher, you don’t seem to care much at all about your students”.

Sister Thyresa does not appear aghast or even upset at all. She smiles and nods her head. A+ Lucy. You get it. In just this short time together, you are beginning to understand.”

The other members of the class, a little weary, but wide eyed begin to sit up straighter and listen.

Sister Thyresa takes a chair and sits with her class. “You are doctors. You have learned how to treat, but you have not been taught how to care. You know the terms, the diagnoses, the test scores, but you need to know your patients. You need to CARE about them. Most of all, you need to listen. Validate each of your patients’ concerns. It really doesn’t take that much longer for you. If they know that you care about them as you attempt to care for them. You may not have all the answers, so be honest with them. Explore with your patients. Don’t be afraid to try something new with them. Be patient with your patients. They are persons first.

This class is dismissed. You will have to decide if you pass or fail. That will be determined by you back in your office. Go, and be well.