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What Awareness Means To Me: Heide

Post Published: 24 March 2010
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Category: National Autoimmune Diseases Awareness Month March 2010
This post currently has 20 responses. Leave a comment

My mother is my inspiration for advocacy.  Marilyn Conant, my mother, had breast cancer when I was six and several complications developed. I would make her a can of soup before school and hurry home to make sure she was alive. Just the two of us, she was divorced when I was two. Due to the mastectomy she had had several silicone implants and was one of the unfortunate people to become chronically ill as a result. Mom was a wonderful writer and added her voice to the local papers on her issue and even appeared on the local television to speak about women and men with silicone poisoning. Suffering many autoimmune illnesses, she never complained.

As I developed chronic autoimmune disorders, I felt I too had to be silent, not show my pain. After each surgery or diagnosis, I would try to just fit in. Stress from silence made me withdraw from friends, then family. Celiac disease brought me the awareness to be my own advocate. Restaurants regularly would say, “its all right we have white bread” when I told them I was allergic to wheat. It helped to learn the right questions to ask them. As I got braver, I would find a manager and educate them on celiac, often quoting that 60,000 Americans have it and it is not to be dismissed.

My family is plagued with a variety of autoimmune disorders. My sister-in-law told me about Dear Thyroid. Learning of other people with chronic issues and the similarity to mine made me feel welcome. Their words inspired me to take action.

No longer do I feel ashamed of my health. I am sharing with all who will listen about celiac, autoimmune disorders, and the connections to the small butterfly-shaped thyroid that are just being discovered.

Now I give facts I have read on Dear Thyroid, and explain how they can learn more. Connecting with people who are in desperate need of information and don’t know where to go for help. I feel empowered with every single person I touch. Through communication and education, we create a world of learning and compassion. Now I am an advocate,  Ã¢â‚¬” not for me, but for all of us who suffer.

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20 Responses to “What Awareness Means To Me: Heide

  1. Heather says:

    Heide, Thanks for having the courage to stand up & be a voice & advocate for yourself! I hate how chronic illness makes us more withdrawn & is something I have to fight everyday.

  2. Well done Heide for speaking up and educating others. I know exactly how proactive you have been about thyroid disease and other autoimmune diseases in your efforts to educate and help others. I am so very, very proud of you and I know your mother and Gayle would have been too. Together we are going to make sure you get well as soon as possible!

  3. Dear Thyroid says:

    Heather – I felt the same way about Heide’s post. Her courage and willingness to advocate for herself were/are so inspiring.

    You’re right, having to fight for it every day is exhausting and frustrating. As a result, we do feel more withdrawn.

    Hang in, my love. You aren’t alone.

  4. Dear Thyroid says:

    Sarah;

    You are WONDERFUL.

    xo

  5. Lori says:

    Heide, you brought tears to my eyes because I can relate to so much of what you said. I am so proud of you for speaking up and out. Without a doubt, your Mom is very proud of what you are doing for her and yourself.

    You could have taken the words right out of my mouth, Heide.—(quote) “After each surgery or diagnosis, I would try to just fit in. Stress from silence made me withdraw from friends, then family.”

    My heart breaks knowing others have suffered this way but at the same time, it’s what inspires me to beat this and become well, because I know I have you and others who know what it’s like. I am proud to have you as one of my new friends.

    {{HUGS}}
    Lori

  6. Lolly says:

    Heidi,

    what a sad letter but also inspirational thanks for speaking out and helping others this is what Autoimmune awareness means to me.

    Lolly

  7. Heide says:

    Every day I see so many of us who have chronic illnesses sharing and helping one another. Some people feel so beaten by life, the Dr. even ourselves,I try to imagine that the person I approach, and share my story with may use the info to help another. Thank You all for your kindness and support.

  8. Tami says:

    Heide,

    Thank you for sharing your story, watching you and your mother gracefully live through your various illnesses gives me courage and strength to deal with my own. I Love you.

    Tami

  9. caroline lamont says:

    Hi everyone I am a new thyroid friend. I live in Canada, and feel so grateful right now for our health benefits here. About 13 years ago I started complaining to my doctor that I couldn’t loose my pregnancy weight, and that I felt tired. I got the usual response it’s because your hormones are out of wack, work out eat healthy, was always the reply.This went on for 6 years, I had been trying desperatly to have a second child for three of those years. By this time I was 37 years old turning 38, I was now desperate and finaly one day I told my doctor” I can’t mess around anymore I want another child please send me to a OB”,she did, and on my 1st visit I was put on a medication to increase my egg production. Bingo after after 1 session of pills I was pregnant.On Dec 26th 2002 I gave birth to my 2nd beautiful healthy daughter Lauren. I was ecstatic, but I felt terrible.I was tired, dizzy, couldn’t focus. As time passed, I felt like the ground was coming up to meet me and slap me in the face. My newborn was moaning and vomiting (projectile) every time I breast fed her. I went to a nutritionist, she told me to cut glueten out of my diet, as she felt my baby was having trouble digesting it in my milk. I did that immediately, and there was an amazing change in her for the good. I did that diet for 7 months, and for those of you that follow a glueten free diet know how hard that is, it is in everything. I ate nothing else than chicken and veggies for 7 months.
    I still felt terrible, and guess what? i didn’t loose an ounce.
    As time went on I got weaker and weaker, I couldn’t even hold the hairdryer up to my head to blow dry my hair. My hair was thinning, my body was bloating, and my heart was doing overtime, which my doctor told me where panic attacks.
    One day when I couldn’t take any more and my family thought I had lost my mind ( don’t even get me started on post partem depression), I walked into my local hospital, pleading for help.They took one look at me and sent me out to my car, and said stay there until someone comes to get you! they thought I had SARS.4 hours later I was seen, my family doctor happened to be on call at the hospital that day. She didn’t recognise me, my body was so distorted, after a battery of tests I was diagnosed with an underactive thyroid my results were off the scales, they weren’t panic attacks, that was my heart stressing.
    There is so much more to tell, but that is for another day, If you are all willing to hear! right now I have to get my 2 girls to bed,but I am so thankful to find this wonderful support group. I stll struggle every day,my Insomnia is probably the worst thing I suffer with.

    So Dear Heidi and everyone else, our pain is real, and we are not off our rockers like some of the doctors want us to believe we are. Six years ago, I couldn’t carry on a coversation, today you would probably ask me to shut up!!
    sleep well every one!! I hope I will, knowing there is a wonderful group of people out here that care, and that together we can make our lives wonderful again !!

  10. Hypogirl says:

    Heidi,
    I love your letter. I can feel your advocacy coming through. Thanks for sharing your story with us. The more people we educate the more people we bring together the louder we are.

    Thanks for joining our little corner of the web. 🙂 We all shall inspire.

    And for fellow geeks out there “so say we all”! 🙂

    Caroline, Your story is remarkable! Please write a nice long letter to your thyroid! I would love to hear more of your story. 🙂 Welcome to the club!

  11. Hypogirl says:

    oh boy! can I use anymore smiley faces?!!??? oy vey.

  12. Dear Thyroid says:

    Caroline – Welcome to life in the Gland Canyon… So sorry that you’re a member of the Jacked Thyroid Club, but we are here for you and each other. We are super glad to have you.

    xo

  13. Dear Thyroid says:

    Heide;

    We’re very proud of you. Thank you for sharing your story with us and for being as brave as you are.

    xo

  14. Dear Thyroid says:

    HypoG, you’re killin’ me. You are so hilarsquared.

  15. Dear Thyroid says:

    Tami, Lolly, Lori, HG,

    Your outpouring of support and love is tremendous.

    Youse all rock the roid.

    xoxoxoxo

  16. Joanna says:

    “Now I am an advocate, not for me, but for all of us who suffer.”

    Wow. Heide, that is amazing. And you are amazing for having that wonderful perspective.

    xoxo,
    Joanna

  17. Heide says:

    Caroline Lamont, Your story is so touching and your presence is so needed and wanted. I for one would love to hear more about your experiences!
    Hypogirl, you are so kind and thoughtful to us all and it makes me feel safe to type my mind, lol. And i love the happy faces 🙂
    Lolly, thank you soo much,your support is uplifting.
    Heather, with each other we are no longer isolated in our illness.
    Lori, Sarah, Tami, You are the wind beneath my wings!
    And all my other friends in hope of health, I hate the fight we have to face, together we are not lonely sad or afraid we are an army of health in progress.

  18. Dear Thyroid says:

    Rock on, Heide! You’re an inspiration to all of us and a reminder that we are worth fighting for.

    Thank you so much for sharing as much of yourself with you as you have. I hope we hear more from you!

    Katie

  19. Heide says:

    Joanna, thank you for your kindness. When I read the depth of hurt and suffering in the posts I cannot stop my tears. My heart aches for us all, and the realization we have each other to learn from and gain courage, strength, gives me hope I had lost.

  20. Laura says:

    Thank you Heide for sharing your story. I was deeply touched and immensely inspired by your story. It must have been hard growing up in those circumstances and then only to find yourself dealing with a autoimmune disease.

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