http://dearthyroid.org/what-awareness-means-to-me-heide/
This article is kicking off a series of articles from guest writers on what awareness means to them in honour of Thyroid Awareness Month. If anyone would like to contribute their own article on this topic, I would be happy to publish it.
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 would regularly say, “it’s 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, notably Hashimoto’s thyroiditis and, thanks to my new doctor, it is looking likely that I am finally going to be diagnosed too and put on the hormones my body so desperately needs. My sister-in-law introduced me to a few chronic illness websites. 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 learned on chronic illness websites, and explain how people 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 – not for me, but for all of us who suffer.
Beautifully written, Heide. You are very inspirational yourself! I couldn’t be happier to hear the news that you have found a good doctor. The news fills me with hope that 2011 will bring wonderful changes for you!
I know, Lori! Isn’t it awesome. As we discussed, Dr Gent sounds extremely promising, particularly because he treats subclinical hypothyroidism by symptoms and not just by blood tests. His medicine of choice is also Armour Thyroid, so he’ll be switching Steve to that too in January. The big appointment is on 21 January, so fingers crossed that everything goes well. I’ll be very interested to see which of Heide’s symptoms improve once she is on the thyroid meds – she has not been definitively diagnosed yet, but we are pretty certain and the doctor seems pretty sure too.
I can’t wait to hear how the appt goes on the 21st and I’m glad Steve is also going to be changed to NDT. Even without clearcut “hypothyroidism”, I highly suspect T3 will improve symptoms, particularly pain, but also many other related symptoms for people. Even if it’s in the “normal” range, I think anyone without definite diagnoses and unexplained symptoms would benefit from a trial of T3. I was very happy to see recently that there are trials going on with T3 treatment for fibromyalgia. It gives me hope that doctors will start paying attention to this and also recognize that being in the “normal” range is not enough for many people.
I totally agree with you, Lori! Everyone deserves a trial of T3 and from a logical standpoint it has always made sense to me that NDT (Natural Desiccated Thyroid) would work better for many as it contains all the hormones the thyroid naturally produces (T1, T2, T3, T4 and calcitonin), plus it is much more bioidentical than any of those synthetic hormones. I was also happy to hear about the T3 trials for fibromyalgia. Very hopeful!
Lori, thank you so very much. You always make me feel so appreciated and lift my spirit. Thank you Sarah for your support and determination, as you mentioned im so excited to get the chance to try thyroid meds. Im torn obout how I will feel if it works as we suspect, thrilled that I will feel better, or angry at all the torture I’ve been through. It will be like planting a withered rose in a sunny garden, I will finally get to fully bloom.
No problem, Heide. I know how you feel when you mention the anger. Although I haven’t been through the mill as much as you have healthwise, I could have done without all those jibes and cruel comments when I put on weight because of hypothyroidism. People can be so insensitive. But really if the thyroid hormones benefit you, you just have to look to the future. You won’t forget the past ever and the injustice that you weren’t diagnosed sooner, but if you start to feel better because of the hormones, you’ll have so much hope, won’t you? I think that is something that you have lacked for a while now and so I truly pray that the hormones do work. It will certainly be fascinating to watch your progression and see what parts of your illnesses(es) the meds improve.
Thank you Heide. You have always done the same for me! I think I understand how you feel. I felt both hope and sadness at the same time. I still struggle with anger over the injustices and it comes back on days I have more pain and not feeling well. I don’t think it will ever go away but as time goes on there are more good days, and it’s so important to have hope and being able to live life as happily as possible. When those moments of anger come up I feel them but I remind myself the idiots who failed me are not suffering one iota over it; I’m the one suffering from it and I’m the only one that can put the worst of it behind me. It is part of who we are now, but I hate to lose and if I let the anger take over, they win and I feel worse! We are all damn strong women. I think part of the motivation to succeed now comes from that anger, if that makes sense. Yes you will bloom and it’s a wonderfully strange feeling. ♥
Hey Lori,
I think that anger and venting is healthy to some extent, but as you said we can’t allow it to take over our lives. We have to try and do the best with can with what we are given even though things can sometimes seem very unfair.
I’m glad that you have such a positive attitude and that things are going better for you. We have to look to the future because letting go allows us to heal mentally as well as (hopefully) physically.
Love,
Sarah
thank you so much for sharing Heidi and nice to make your acquaintance. I am grateful to e-meet inspirational people and make new friends with whom you can share some common ground. i aplogize if I’m a bit absent from reading everyone’s articles while I’m in school due to barely keeping up with my own homework readings. however when I am on break, i love to catch up an read everyone’s inspirational work. talk to everyone soon & take care!
Hugs,
melissa d
Hey Mel,
Thanks for commenting on Heide’s post. I’m sure this won’t be the last thing she’ll be writing on my blog:-). You’re also welcome to write something whenever you like. Don’t worry about not keeping up with articles. You should never feel pressured to respond. Oftentimes, I think people read stuff and just don’t have the time or inclination to comment, which is fine too.
Hugs back to you,
Sarah
So nice to E-meet you Melissa, I understand how buisy life can be. Sometimes life speeds past me in a blink. My intentions are always to read and respond to all the wonderful works from old and new friends, It never happens quite as planed. Even if i don’t always respond I am in aw of the kindness, talent and strength of the people Ive been lucky to know.