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No Longer Thankful Just to be Alive

Post Published: 06 July 2010
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Category: Dear Thyroid Letters
This post currently has 10 responses. Leave a comment

Dear Thyroid,

When I first found out you had to go I was happy to be rid of you. I wanted the follicular thyroid cancer to be gone and did not think twice about the process of surgeries, low iodine diets, being hypo, RAI treatments and a life long dependence on a pill to stay alive. I just wanted to do what needed to be done to stay in this world and be a mother to my young son and a good wife and daughter. I was strong, maybe too strong, and I never complained. You could say I went into automatic pilot mode.

I really thought as long as I could make it through this then life would be a cake walk. I convinced myself of this and thought I was the lucky one because I was still here. Little by little I realized that I am not the same person without you. I told myself I was a better person but that is not true either. I’ve come to understand that you were so much a part of everything I ever was and I never gave you credit for that.

Like so many others, I thought you were just my metabolism and you did a good job with that. Well, if only that were true. You were me and when they took you they took me too. I am ashamed of myself that I took my health for granted and wish I would have taken better care of you so you could take care of me like you always did.

How foolish was I to think that a pill could replace you?  It hasn’t and now I know that I’ll mourn you forever. This pill isn’t cutting it anymore and now I know that it will always be a process if I want to be even a reasonable facsimile of who we were. It’s taken me a long time to admit this, perhaps it was the brain fog, or the thankful to be alive crap I convinced myself of.

But no more my friend, you may have been my partner in crime but I’m going to have to find my way without you. I can’t just stop living and loving because you are gone. Enough is enough. I have to remember you fondly and be thankful that I had you for as long as I did and then I have to let go and find a way.

Please don’t take it personal but I can’t just sit here anymore and let life pass me by. I have too much left in me for that. Although I don’t feel that way right this moment, I know that I’ll get better because I have learned so much about my body and I won’t let it fail me again, not if I have anything to do with it. I don’t care if the doctors think I’m crazy or the office staff thinks I’m a bitch, I will get the proper care and treatment that I deserve. And I’ll hold my head high and not just be thankful to be alive any more. I have to take care of the rest of me so the same thing does not happen to me, the me without you.

If I’m not on top of this awful disease, it will take over my life and I no longer find that acceptable.  And, I will help others get the care they deserve too. I hope you are proud of me, I know this is what I am meant to do. We could have done it better together for sure but that’s not going to happen, so I will have to learn to live without you. I hope you understand and you rest in peace wherever it is they sent you!  I miss you more than I ever thought I would, I was so naïve.

My name is Donna and I am a 47 year old follicular thyroid cancer survivor that is not longer thankful to just be alive.

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10 Responses to “No Longer Thankful Just to be Alive”

  1. Debra says:

    Well said. Nobody tells you how this disease robs you of your life. Not everybody can get better by taking a pill that is SUPPOSE to replace your own thyroid hormone. I’m one of those people.

    I’m now a severely depressed person, who has become a total recluse. I’ve lost almost all of my hair, and am too embarrassed to be seen by anybody. What little hair I have left, is like straw. I sleep 3 hours a night ( if i’m lucky ), my skin is like sandpaper, and looks grayish, I have black circles under my eyes, I’ve lost all my muscle tone, and my skin just hangs off my body, my nails peel off in layers, I’m so pale, i already look like dead, I have horrible panic attacks, I could go on and on, but i’m sure anybody reading this is bored by now.

    The person I was before has died. All that’s left is a shell now. But the doctor’s say my levels are ok, so i must be fine, and it’s all in my head. I’ve been on 4 medications this last year, and with each one, I continue to feel worse. NOBODY will listen to me. I’m so desperate, I’ve tried to end my life twice. Still, nobody will listen. Now, i’m just crazy. Crazy, really, cause I don’t know one person who would want to live like this. It gets harder and harder each day, and I hope every night when I go to sleep, that I won’t wake up the next day. The pain ( mental and physical ) has become unbearable. My husband got fed up, and left. So has everybody else in my life. Nobody wants to be around a sick person, who just lays on the couch all day, and looks like a freak now. I guess I don’t blame them.

    I am NOT thankful to be alive. My life, as I knew it, is over, and I don’t want this new one. It’s a nighmare that I will never wake up from.

    I hope you keep fighting, and can get your life back. I wish somebody would have warned me about what was going to happen to me. Instead I heard, just take this little pill every morning and you’ll be fine. I was pretty stupid to have believed that one. I didn’t know that this disease would take my life. It’s just not fair.

  2. yogichic says:

    Donna, thank you for putting into words what I have been feeling lately. I could not have said it any better.

    It has been a rough road not knowing who I will be when I wake up each morning. Some days I feel fantastic but most days I am so tired and blah that I don’t understand what has happened to the vibrant, joyful woman I once was.

    It would be helpful to hear how to cope and go on without “her.” Keep searching for the pot of gold at the end of the rainbow. Then share with us how you found it.

    ☮ ♥
    Monica

  3. Linda says:

    Right on the money Donna, well written…thank you!
    @Debra….you DON’T have to live like this…please find a Dr. that will treat you PROPERLY. Google “Mary Shomon’s Dr. list”, go to stopthethyroidmadness.com, google articles by Mary Shomon, google “lowcarbfriends” and join the thyroid forum there and ask “NonstickPam” for advice on Dr’s in your area, she has alot of resources, as does Mary Shomon and Janie Bowthorpe (owner of stopthethyroidmadness)…..GET EDUCATED. You’re very obviously NOT seeing the right Dr. I feel your pain, I went through it too, but you CAN get well…you just have to find the right Dr. to get you there….where do you live Debra? Maybe I can help you. I feel horrible that you’re in such a state with this, my heart hurts for you 🙁

  4. Donna, I love this letter! You are so right–we can’t just be thankful to be alive; we actually need to find a way to live. Not that it’s an easy task, but we have to try. We cannot let cancer win.

    Thank you for sharing more of your story. You are so awesome!

    xoxo,
    Joanna

  5. Dear Thyroid says:

    Donna –

    Though I don’t have thyroid cancer, I am so inspired by your letter. I want to make sure that I do so much more than survive the near death experiences of my disease. I want to live. I want to advocate for myself, for a better quality of life, and so much more.

    Love this.

    Thank you so much.

    xo
    Katie

  6. Bee says:

    Isn’t it a pisser that we-like everyone healthy-took our lives for granted. Thyroid disease has made me realize that each day is precious. My life hasn’t changed for the better but it has changed. It’s up to me to decide just how I’m going to let this change affect me. It’s taken 4 yrs. for me. Four yrs of despair, embarrassment, humiliation, exhaustion, anger,etc. I still have all those feelings but I’m learning that if I put these negative feelings above all others, my quality of life sucks. So I choose to move forward. The days I feel like crap I don’t deny the feelings. In fact I have learned to let my loved ones know that “on this particular day” I FEEL LIKE CRAP and I’ll probably be a bitch. I also let them know that “on this particular day”no one else is allowed to hurt (I made this a law in my house because everytime i got a pain in my back or foot or ankle, my husband hurt worse). So if I have a legitimate complaint and someone in the house starts complaining i politely tell them that today, at this time, it’s my turn to hurt. They’re going to have to pick another day or hour to hurt because now is my turn.I then am able to give in to the hurt but not let it rule my every waking moment bcuz sometimes I make myself sick listening to me

  7. Linda says:

    Dear Donna, There is no doubt that what has happened to you is unfair. So many with the thyroid issues are lost and alone. I am glad you are sharing with us because we do care. I hope you do not give up, we need you to be willing to show the Doctors how much many of us need help. Also we need to tell Doctors that they have to stop pretending the “cure” is so simple. I find that so many of these Doctors do not prepare us for what “really” will happen. Why do they do this? Are there really some people who have complete success with these procedures? I question if they were correct from the beginning with their diagnosis….This concept of them saying it’s all in our heads has got to stop. Perhaps their own ego can’t admit they didn’t learn how to fix us. These practices are sabotaging the very real approaches to finding cures.
    Keep fighting, MAKE THEM HELP YOU! you deserve to be WELL. I was diagnosed in 2002 with Graves. I fight to stay well too. My best to you dear….Linda

  8. Helen says:

    Hi Donna, I’m so proud of you my friend, you’re an inspiration to fellow humans, even after all you’ve been through you are there for others to make sure they are ok no matter what their problem is, I know because you often check up on me when you don’t see activity on my page, even though we haven’t met personally I feel we’ve known each other for ever, you Donna are a person anyone would be proud to call a friend and I’m so glad we connected. My wish for you is to get even better and stronger than you are now and I know you will, you have that fighting spirit, woe betide any doctor that fobs you off with their lame excuses, Donna you’re one in a million and I love you, hugs my friend 🙂 xx

  9. Donna says:

    Thanks everyone for reading my letter and taking the time to comment. Writing it was part of the process of accepting that I do have thyroid disease and I need to be an advocate for myself. I will not depend on my doctors alone to put the pieces of this puzzle together.

    For me, it took over 3 years of not feeling well before I found this site and when I did, I saw myself in so much of what was written by other patients. Without Dear Thyroid I am not sure I would have ever recognized that I have thyroid disease and it has to be managed by me or my quality of life will always be less than it should be. I am more than thankful to anyone who has ever written a letter or made a comment on DT, this place truly has made me determined to not only help myself but to do what I can to help others. All of our stories are not easy, some are beyond sad, they are criminal, but I honestly believe that if we arm ourselves with knowledge and keep encouraging others to do the same then we can get closer to where we need to be. It is not easy, so much of what we need to know is not handed to us on a silver platter. And to complicate it more we have symptoms that are often misdiagnosed or blown off by the medical field as something else and we walk away feeling hopeless and still sick. I would like to see others avoid this and believe we can truly help others get the care they deserve.

    I am in a good place, my hyperthyroidism is settling down and I have a good team of doctors in place now that I trust. I am not the same person and will probably never have the same energy that I did pre-cancer but I am alive, I am on top of this disease and I have this community to lean on. Awesome!

    We deserve to be heard, we deserve better care and treament and we will get it. There is no reason that people should suffer needlessly or for longer than necessary. We have to advocate for ourselves and each other because the options suck. For some of us that may be easier said than done and I understand that but we can encourage each other to not accept less than we deserve.

    You all rock. I will reply to each of you individually a little later today.

    Love,
    Donna

  10. Sarah Downing says:

    Hey Donna,

    I’m slammed right now (hence the short comment), but I did want to take the time to write and say what an inspiring and positive person you are. I know how eager you are to help others and spread awareness and that is such a wonderful thing!

    Love,

    Sarah

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