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Comment Of The Day: June 27, 2010

Post Published: 27 June 2010
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Category: Comment of the Day
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We are all patients, obviously. Yet, we don’t refer to ourselves as people that have cancer, a chronic condition or an autoimmune disease. We refer to ourselves as patients. Why?

I wonder what it would feel like, and if it would bolster our self-esteem, if we referred to ourselves as people. Kind of like “I’m Katie. I have Graves’ disease or as I like to call it, the coffin. It’s so nice to meet you.”, or anything, really.

Sarah’s column inspired the shoes off of me today. So much so, I ran out and got a manicure and a pedicure with my mother and my sister. Despite how I might feel about myself, after reading her list of 27 things that I can do to improve my self-confidence, I felt incredibly empowered to do something. Afterwards, I felt empowered.

If you missed Sarah’s column, you absolutely have to read it and everyone’s comments. Some people shared items from their ‘feel good’ list, while others expressed gratitude for ideas, and so much more.

Sometimes, our disease consumes us. Sarah, listed wonderful ways to pull ourselves out, even if it’s just for a moment; to, essentially, remind us that we are people. If you want to add to the list in the comments section, GO FOR IT.

Sarah’s column also got me ruminating about our forced reinventions and how the mental and physical elements impact ourselves, our familial relationships and friendships. This was the impetus for today’s Thyme for a Literary Healing. The comments were brutally honest, angry and beautifully tragic. If you haven’t reached out to share your story – and open Pandora’s Box, please do.

Flying With Broken Wings: 27 Easy Ways To Get Back Your Groove, a snippet from Sarah’s column “It’s very easy to get stuck in a rut when you’re faced with chronic illness. Dealing with pain and fatigue day in day out can really get a person down. However, there are ways to brighten up your life and make yourself and others smile. Here are just a selection that I devised together with my beautiful sister-in-law Heide.”

Today’s comment…

Fuzzy Thyroid Brain

What a wonderfully positive post! Thank you Sarah x

I definitely recommend #3 I’ve been ‘fostering’ dogs for local rescues for many years now, and its extremely rewarding, especially when you see that bedraggled, mentally screwed up mutt, go off to his new home, as a happy, healthy & confident doglet!

My current foster dog is a deerhound lurcher, and she’s lovely, such a clown – never fails to make me smile, no matter how much of a funk I’m in. She’s proving hard to re-home though, because she’s HUGE!

In addition to her, I have 5 other dogs of my own, 2 of which are ‘failed fosters’ that I just couldn’t let go of – blush

Some really great ideas there…I plan on working slowly through the rest of them, thanks again Sarah x

Thyme For Literary Healing: Forced Reinvention’s Impact on Thyroid Patients, Their Families and Friends, the central premise of today’s literary healing was “As thyroid patients, we are forced into reinventions, mentally and physically. Our minds are gifted with octopus tentacles lacerating our craniums and rearranging our memories or eradicating them, sending our emotions on “Phantom’s Revenge“, and our bodies into mega sized muffins or anorectic French fries. Too many of us endure hair loss, brittle bones, additional autoimmune conditions, and radically change our dietary lifestyle. What fun?!

Today’s comment…

Christine S. says:

I think after you’ve heard the phrase from a family member or friend… “It’s always something….” you simply close yourself off.

Yes, damn it, it is always something!! It is something beyond my control — I have little say in the way this disease is stealing my life, my body, my mind. No matter how hard I tried to put a positive spin on how I was feeling or what I was dealing with it never truly matched how I was really feeling. Because if I told you what I truly felt like in any given moment – – you’d run far far away, or look at me with such a pitiful look or even better say something like “just get up and do something and you will feel better” or “it can’t be that bad” or “are you sure its not all in your head”…. yes those comments make me feel so much better.

It’s not enough that the doctors for so long mis-read the signs and symptoms, or would send me off to this specialist or that – and then they would not always come to an agreement as to why this or that was happening or the best course of treatment, leaving me even more confused or lost.

All I know is that I felt like SHIT! That from the inside of me I was watching me turn into someone or something I hardly recognized. I couldn’t reconcile what I used to be with who I had become. If I couldn’t deal or wrap my brain around all that was going on with me – how could anyone else?

Add into the mix the other life curve balls thrown my way… death of a family member, car accident, surgeries, stresses of raising a family and all that comes with it, trying to be everything to everyone and dancing as fast as you could to the beat of the day. Even on the days you managed some semblence of “normal” you were left exhausted and lucky if you could even remember how you managed to do what you did that day.

Medications for various ailments all interconnected to your thyroid disease – and all of their side effects, making you that much more screwed up. Body image? What body image… you are not anything like you once were, and sometimes, your partner is the one to tell you so. Close off even more – sex? what sex? Why would I even put myself in that position knowing you don’t see me the way you once did.

Oh this weight gain, hot flashes, cold spells, loss of hair and so on and so on… yes that really makes me feel all sorts of beautiful and sexy… NOT. I can hardly stand to look in the mirror without hearing your words haunting in my ears…. so I just climb back into my hole, my chair and watch life happen for everyone else but me.

Doctor appointments and more doctor appointments, differing opinions, solutions and advise – – when all I wanted, needed, was someone to tell me how to feel better, just tell me what to do – I’ll do it! Tell me how to prevent it – I’m all over it! More often than not in those early years that didn’t happen, and the disease ravaged on. Destroying my sanity, my hope, my dreams, my body image and many of my relationships along the way.

Recovery? For as long as this disease had it’s way with me, it will take that much longer to regain some of what I lost along the way. I will never get it all back. I will never get moments, precious moments back – once they were here and happening they were just as quickly gone and I missed out on more than I care to remember, even if I could.

Thyroidectomy – – a chance at some sort of life, a hard road traveled. I can see the hope in the eyes of my children, my family that this will give them me back. An overnight cure – – nothing could be further from the truth. While, it has gotten better, those initial 6 months or so were hell. I can see you watching me, and I want to give you me back too… but I can’t not in the way you expect.

Then you also come to realize that just because it is now gone; you have the word cancer floating in your mind. You have the residual effects of it being gone and trying to find a balance, you also still have the auto-immune conditions that will not go away, just because the thyroid is now gone. Some of those conditions are only now being found out – – so there is more of “it’s always something” being said.

While there are some physical aspects that have improved, there are others that are just as bad if not worse than before that still need to be dealt with… and all I want, believe me, is for it be OVER with. ALL OF IT! I want this as much for me as I do for you.

The sad thing is the damage is more than what appears on the outside… it is what cannot be seen. The hurtful words that wounded my soul. The failed expectations and the looks that I can see still lingering in your eyes when you look at me – they haunt me in my dreams.

How the hell do you regain a life lost? How do I figure out who I am NOW and all that I can be and do so without fear….

I am better than I once was, I am more thankful for that than I can say…. but I am still affected by the thyroid storm ravaged aftermath that I find myself holding my breath, looking over my shoulder, and afraid to commit to embracing my new life for fear of disappointing not only you but myself.

OMG I try – I do – to be more, to be better. I don’t want to disappoint you. I don’t want to be the “it’s always something” girl. I don’t want a life defined by this disease and its partners. I don’t want this to be the last word, or thought that you have of me. I am here, inside of me, I am here fighting like hell to make my way out…. can you hear me? can you see me? Do you even want to at this point? Is it too late?

Tomorrow, we’re kicking off the day with another literarylicious Dear Thyroid Letter, and in the afternoon, we have a really exciting, informative post, written by Alexa Landsman.

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2 Responses to “Comment Of The Day: June 27, 2010”

  1. DAT says:

    Wow Christine, your comment is so powerful and beautiful. When I read it it felt like me at various points over the last four years. Give yourself credit for what you have done becuse it sounds to me you have done plenty. It is a life altering disease and it does change us for sure. I agree with the just telling people everything is fine too but it is good to get it out so if here is the only place you can do then please do. Loved your words. Thank you. And don’t give up, it’s a major pain (no pun intended) but it is worth it. There is a light at the end of the tunnel, we can get there from here, we can!

  2. hypovettech says:

    It’s so good to know we are not alone,that there are a lot of us dealing with these issues…as a friend on another forum says “Knowledge is power,power corrupts,study hard,be evil” I say educate yourself so well that you are your own best advocate and can refute those who would have you believe ‘well, you have your medicine…taking that fixes you so that you don’t have the problem right?

    “you’re not still having problems, you’re on medication…that takes care of it…it’s not your thyroid…it’s something else…you’re depressed you need to be on Prozac” yeah right….

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