Dear Thyroid^TM

(Written by Sharen, Thyroid Patient)

Dear Thyroid,

Happy New Year. You and I have finally WON! Well, let’s say we’ve won the first step, and that is finally getting the insurance company to open their eyes. Not sure if it was my patient call, or the medical bills or the doctor’s office finally calling to let them know that the generics are not accepted in my body. Anyway, I received a call today to let me know that they are letting me take the correct medication for one year.

Dear Thyroid,

Well, two days have passed so I called the pharmacy, and—yep!—they are saying that the insurance company will not process the medication. So I called the insurance company back, and they are stating that the pharmacy did not call them. So, they will call the pharmacy back, then me.

Dear Thyroid,

Another day has passed and so far not a call from anyone. The pharmacy states that the insurance company didn’t call, so I will call the insurance company. Called the insurance company and the lady suggested that I stay on line while she talks with the pharmacy. She called them, then she talked with me, stating that the pharmacy was lying and that the medication will go through at a certain dosage only per pill.

Dear Thyroid,

Well, another day has gone by and I am still fighting with the pharmacy and now the doctor’s office. How hard is it to understand that the pill can only be 25, not 50! Finally, after 4 HOURS, I’m able to pick up the right dosage and the insurance company is paying.

Dear Thyroid!

Oh Good Grief! I stopped at the pharmacy and they have not even started to work on the prescription. Then they state they do not have the full amount, that I will have to come back sometime next week. They also stated that none of this was their fault.

Dear Thyroid,

I am back on the right medication, and I am feeling better. The thyfog is less and the thyblindness has eased as well. The thought of seeing the doctor in March is not high on my list. I have kept record of all the running around that has been done due to her people and herself and I feel she needs to know that this is not the way people should be taken care of.

But I won, ONE battle, and maybe because of this victory, others will be able to fight and win as well.

So, OK Thyroid! Wakee….Wakeee….

Sharen

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Thyrants for the Week

Facebook/Twitter

Ana Prpic: I don’t know which is worse, for weeks I was sleeping 9,10, 11 hours and still was tired, past few days I sleep 5 or 6 hours and have so much trouble falling asleep. It’s both sad and funny

Anita Roberts: I’m all over the damn place right now. Last week it was heart palpasaurus, exhaustion and lotsa sleeping, including naps, hair fall. This week it’s fitful sleep, tight throat, rough skin, joint pain. CRAP!! And I was doing so well. Guess my Hashi’s is on the attack again. Pisses me off. I’ve lost weight tho. Weird.

Kathleen Taylor: my focus is terrible. I can’t even focus on one thing at a time, never mind more than that

Christinah84: Having one of my slo-mo days. Everything seems to take forever and I constantly forget what I was about to do.

ARTIBILITY: Ok…here goes. I hate when I am freezing cold… and it is 75. I hate when my hair falls out & I have somewhere to go. OK it 4 now

Glandside Adventures

@HypoGirl of HypoGirl.com has created a wonderful podcast, her first, chronicling her experiences with Hashimoto’s Thyroiditis. In her podcast she covers symptoms, her feelings related to her symptoms and fears regarding her future. You must give it a listen! We’re very proud of the girl.

@Kairol, Thyroid Cancer Patient and Patient Advocate, and author of “Everything Changes”, is doing a book reading and happy hour in San Francisco co-sponsored by “I’m Too Young for This”. It’s going to be a glandarific time! If you live in the Bay Area, you simply must head over and meet Kairol. Here are the details.

We’re resurrecting an oldie but a goody later on today, “Marco Thylo”, written by Katie Schwartz and Joanna Isbill. Stay tuned, more dish coming from the Gland Canyon later.

In case you missed “Why We Write Letters To Our Thyroids” this morning, give it a read and let us know what you think. We hope to see more letters and literary things from you in the coming weeks!

Love,

Us

Tammy Wynette had Stand by your Man; thanks to Robyn Davis Hahn (Hashimoto’s Patient), we have “Stand By Your Gland!

Sometimes its hard to be a patient
Giving all your thoughts to just one gland.
You’ll have bad times and it’ll have good times
Doing things that you don’t understand.

But if you love it you’ll forgive it
Even though it’s hard to understand.
And if you love it, oh be proud of it
‘Cause after all it’s just a gland.

Stand by your gland
Give it a throat to cling to
And something warm to come to
When nights are cold and lonely.

Stand by your gland
And tell the world you love it
Keep giving all the love you can
Stand by your gland.

Stand by your gland
And show the world you love it
Keep giving all the love you can
Stand by your gland!

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Whether you have Hashimoto’s disease, thyroid disease or no disease, a humorous tune puts pep in our step! Share your thoughts with Robyn and if you have a tune or rhyme to spin send it along or leave it in the comments section.

• Heroic: Being heroic does not rest with a patient’s ability to cope with their disease, or accept it, or happily live side-by-side with it. Being honest about it does. Assigning emotions to that is irrelevant, to the extent that whether you’re happy, sad or angry, you’re willing to speak out about it, and that is heroic.
• Bravery: Each person who engaged to discuss: Using clay, if you could mold your disease into a shape, what would it be and why? If you could ask your disease questions, what questions would you ask? and What do you hate most about your disease? and so many others. To share your experience of your disease and how it affects you with other patients is brave. I don’t know if everyone realizes just how courageous it is. So many thyroid patients are in seclusion, ashamed of their symptoms and what their disease has morphed them into. By reaching out to each other, you remind us that we are less alone.
• Sadness: Our respective thyroid diseases and thyroid cancers make us sad, that’s human and that’s real. The idea of: “Turn that frown upside down”, is something I reject with every fiber of my being. That’s not to say that I endorse wallowing in sadness because that doesn’t help either. Sometimes we need to just be sad. The expression of sadness reflects the human condition and sharing that sadness is a beautiful thing.
• Happiness: Many patients feel gratitude and happiness after contending with a diagnosis and enduring the process of thyroid diseases and thyroid cancers. For some patients, their disease redefines the core of their being on such a deep and healing level. This is an awesome, inspiring and exquisite gift, and should be shared as much as every other emotion.
• Humor: Making wise ass cracks about your disease, wearing humorous thyroid t-shirts, writing a funny letter to your thyroid or from your thyroid, and posting on Facebook/Twitter and in the forums, funny comments about a bad endo experience, a creepy ass symptom, or just making us laugh about how you feel, all of it is healing, in my opinion. I refer to my eyes as lady balls (I have Graves Opthalmopathy, how could I not?), my thyroid has made me so fat, my hips are the size of the world wide web and my previous endo’s were so stupid, not cracking jokes at their expense simply isn’t an option.
• Outspokenness: Our glands cause psychiatric disturbances, plain and simple. The emotions we feel overpower us like a hurricane. We can’t always control the rage, or depression or paranoia, et al. Similarly, collectively, we have strong ass opinions and personalities. At Dear Thyroid, everyone and their gland is outspoken. I digress, this is a gift.
• Irreverence: Cursing, cursing, cursing. I love to curse. I was born into a family of 5 siblings and 2 irreverent parents with a dark sense of humor. When we could talk, our parents made sure that we knew the top 5 curse words; fuck, mother fucker, prick, asshole and dick. Each member of this dear community isn’t afraid to curse. You have no idea how much this warms my heart.
• Anger: Being angry about what our diseases have taken from us is a normal, human emotion. Often times, I’ve been the recipient, as we all have, of being told that anger is an inappropriate response and unhealthy to the healing process. Of course this makes my blood boil even more. Within the kaleidescope of human emotions, when was anger omitted, because I never got the memo?! To every patient willing to freely express their anger, I congratulate you and welcome your angry glands.
• Intimacy: Though we’ve never met, we have an intimate relationship with each other. Our glands and glandless selves have stirred an intimacy between us that is so rich, it’s experienced in the text and subtext of our words.
• Connection: With every letter you share and every post you write in the forums, on Facebook and on Twitter, you connect us with each other. By chronicling your disease on Dear Thyroid, we read your words and feel connected to you. I am proud of you for writing — keep writing, don’t stop writing letters to your thyroids or posting about your experience of your disease — you bring us together.

Thank you for being your flawless selves. I hope that 2010 brings more voices, new and old school, writing to their thyroids and connecting with other patients. I hope that we achieve our awareness goals and continue our Dear Thyroid Local Meet ups and Phone Meet ups. I hope that we all continue being proactive, heroic, brave, sad, happy, funny, outspoken, irreverent, angry, intimate and connecting with each other.

Thank you for reminding me that I am more than my disease. Thank you for your unabashed letters, ideas and opinions. Thank you for making me feel like I belong to a community of people who get me and never make me feel like I’m alone.

Thyroid Patient Advocate and renowned Author, Mary Shomon, wrote an article on About.com called “The Top Ten Stories Affecting Thyroid Patients in the Decade from 2000-2009“. This article is a must read, for every thyroid patient, doctor, thyroid community and families of thyroid patients. While there is still work to be done, Mary reminds us how far we’ve come regarding thyroid awareness and how it’s flourished in the past decade–very inspiring. Similarly, Mary empowers patients by encouraging us to continue being proactive regarding our health and how we handle our treatment. I encourage you to read the entire article, it’s thylicious.

Additionally, Mary included Dear Thyroid as a patient advocacy site.  We are so honored and grateful to Mary for including Dear Thyroid (Thank you, Mary Shomon!). As a community, we make up Dear Thyroid. Every single patient is the voice of this site. You are remarkable.

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Whether you  have a thyroid condition or not, you are welcomed at Dear Thyroid. Please feel free to leave comments and share your thoughts with us. We’d love to hear from you