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Thursday September 29th 2016

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Thyme For Literary Healing: Forced Reinvention’s Impact on Thyroid Patients, Their Families and Friends

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?!

Frequently, without meaning to, we alienate our family and friends. In some cases, we think we’re doing them a favor by keeping our moods away from them. Or, we can’t bear the sight of ourselves. Or…?

Marriages are obliterated. Dating is a terrifying proposition. How do I explain my disease? Do I have to? If we have children, we’re riddled in guilt for…?

Friendships fall to the wayside, because phone calls trump face-to-face contact. What will they think of the new me? Why or how do I explain it? Do I really want to deal with all of those friggin questions?

Sex, you mean I have lady parts (or) man parts? That’s news to me. Or, can I ravage you and run flee after my orgasm?

Each of our stories are different as well as the impact to ourselves, families and friends. Today, in Thyme for a Literary Healing, let’s discuss it. No stone should be left unturned. Some of us feel downright brutalized and victimized by our diseases. We need to get it out. No matter how scary it is; maybe by sharing it with each other, we’ll each reclaim a teeny tiny bit of ourselves.

Ready? Set? Write!

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8 Responses to “Thyme For Literary Healing: Forced Reinvention’s Impact on Thyroid Patients, Their Families and Friends

  1. DAT says:

    Wow, that describes me perfectly, maybe not all of it simultaneously but each of them at one point or another over the last 4 years. This is an emotional one, they all are really, so I would like to take a bit to digest and come back.

  2. 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?

  3. Shan McKenzie says:

    What to do on days when I’m not the full packed of biscuits, the world seems a mad place and there’s no escape. Love your words Christine, if we chatted for an hour it would be filled with friendship, sadness and some laughter. I know we’re not alone, but some days it feels it.

  4. Christine S. says:

    Shan
    (hugs)thank you.

    No, we are not alone, especially here, but you are right there are moments…..

  5. DAT says:

    Hey Christine, beautiful. I left a comment under comment of the day. Thank you 🙂

  6. Christine, I don’t think I could have said it better. Thank you for sharing your beautiful words. I don’t want to be the “it’s always something” girl, either, but many days that’s exactly who I feel like.

  7. Lisa Stiers says:

    Never in a million years did I ever think a dieasewould do this to me or my family. I was refered to as crazy, nuts, oh she lost it. Why because I took myself off of thyroid and really didn’t take it right from the beginning. Even doctors took me off then put be back on again and again, over blood tests! Well that didn’t help either. My roller coaster ride with the master gland. Now unwanted and unloved because of this emontional ride. I have gone to hell and back all because of a harmone that controls my body and all organs in it. It even help to trigger another event that happened long ago. So that became a excuss, by my family. I didn’t have the ability to keep it buried anylonger. So double trouble! This has torn my family up. They have to blame something and it was me instead of the illness. How I hate pride! I don’t have the guts to say this illness isn’t my fault. I didn’t choose to have it. I deserve to be treated like a person. Not a crazy, lost it sub-human. This runs in my mothers side of the family big time, I was mostly born with it. Now I’m feel guilty because it my be past down because of it. The one good thing I found out today is, a friend had been having problems and had been diagnoise with everything else but thyroid. Well I shared what I had been going through and she went to the doctor, guess what she has hashimotos and see will be seeing the same doctor that I see. I got a big hug from her and her mother and dad today. They went to a site I told them about and she said her mom said look it’s everything that she has been going through for years. I showed her dear thyroid and invited her to become a friend. So I hope she does. She has wonderful parents and family who will support her. However we all know there’s that part of us that blames ourselves for a illness we have no control over.

  8. Sarah Downing says:

    I am so sorry to hear about what you have gone through/are still going through, Lisa. I know that you have gone through hell and back, but you do come across as somebody who is very strong and determined. I´m amazingly proud of you for speaking out and helping your friend get her diagnosis! It´s tough to do sometimes, but it´s times like this where it really pays off.

    Love,

    Sarah

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