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Kim’s Story (Sarcoidosis)

Kim's Story (Sarcoidosis)I was first diagnosed in 2006 with Sarcoidosis. I was told it was lung cancer and that I had 3 months to live. Then they removed the mass and said, “Good news, you don’t have cancer. You have sarcoidosis”. At the time, I was told, most people who have it are fine. It will go into remission, and there’s no treatment required.

What is Sarcoidosis, you ask? It’s a disease involving abnormal collections of inflammatory cells (granulomas) that can form as nodules in multiple organs. The granulomas are most often located in the lungs or its associated lymph nodes, but any organ can be affected. Sarcoidosis seems to be caused by an immune reaction to an infection or some other trigger (called an antigen, which may be from one’s environment) that continues even after the initial infection or other antigen is cleared from the body.

Now, here we are in 2014. It is in my lungs, spine, bone marrow, liver, eyes, hips, tail bone, skin and recently in my sinuses. They fear it is moving to the brain, so I am in the process of scheduling chemo infusions. Sarcoidosis is also called an “orphan disease.” They call it this because there is no cure, it’s not widely known about and research funding is limited, as there aren’t a lot of people diagnosed with this disease.

The hardest part of this disease is how it changes who you are. I am in chronic pain every single day. I feel like I have the flu on most days. I have gone through the scared phase, the angry phase, the sad phase, BUT I stay in the fighting phase! I am still working full time and singing in my band, and I hear people say, “Well you don’t look sick.” We fight so hard to hang on to our “normal,” and yet a disease fights just as hard to take our normal away and changes who we are.

I’ve learned it’s ok to let people know you are not strong every single day, that you have down days and sad days. I think it is ok also to know that we are not weak because we can no longer do it all. When anyone is fighting a chronic disease, you can lose who you are, and your family and close friends also lose you. It’s so important to fight the mental fight and hang on to your heart and soul and never, ever let the disease win, EVER!

Kim
Ohio
Submitted 11/11/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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19 comments

  1. … Kim , I love you and your sprit !
    PLEASE DO US ALL A HUGE FAVOR !? , DON’T EVER LOOSE THAT COMPASSIONATE , BEAUTIFUL , CONTAGIOUS SMILE , IT IS THE MEDECIN WE ALL NEED , THANK YOU , YOU POWERFUL FIGHTER !!

    Sending you from Québec Canada, positive vibes , lots of love , huge load of hugs !!
    Brigitte Estelle xxxx
    ( I wrote a story for my sister Diane Gaudreault in the non hodgkins lymphoma section under my name please join in our conversations !!)

    • Bridgitte, thank you so much! I agree, we have to hang on to whatever positive we have left in us to gather the strength to FIGHT! Thanks for your support from Canada! Kim XOXO

  2. Kim, this literally just made me cry. Not only because my heart breaks for you to be challenged with this every single day but also because it is amazing to see you keeping your hea up and your heart full of compassion. I am so proud to call you family and always know that I am here for you. Don’t ever stop fighting and just continue to live every single day. Don’t let this disease control who you are. You are much much too amazing for that. I love you. Xoxo Tash

    • Aww Tasha, love you! Thank you for your love and support! I love that you are one of my “babies” and you too inspire me with your compassion and love for life and not giving up on what you want and deserve. Love you Chicken! Kim

  3. Kim-I love you and your positive attitude is a source of inspiration everyday. You not only take care of yourself but you take care of all of those around you. You have helped me this year more than you know and for that I am forever grateful.
    Helen

  4. Davina Davis-Norris

    Hi Kim,

    What a wonderful story and pretty much parallels mine. My journey started in 2006 with many test and process of elimination. Not until I relented to the last test which the doctors wanted to do first – open lung biopsy – did we get a definitive answer.

    Yes, some days are harder than others …I keep remember Maya Angelou’s words of a poem…AND STILL I RISE…and a song called I SHALL LIVE UNTIL I DIE. They keep me going.

    So my fellow Sarcoidosis sister, keep smiling, keep singing but most of all KEEP FIGHTING!!!! <3

    • Davina,

      I am so sorry you are dealing with this disease as well. It’s so important to hang on to inspirations and there is no better inspiration than Maya Angelou!

      Say strong my new friend, you keep fighting too!

      xoxo Kim

  5. Bonjour Kim !
    So nice to hear from you , how are you today ? Not in too much pain I hope !? Do you go for walks ? You say you are in a band, is it Country ? What is your favorite song , ” LET IT GO ” by the movie Frozen ? HAHHA !! Man that song played every 5 minutes huh ?
    All the little girls on halliween was dresed like Elssa from that film ! Soooo cute !

    Today I remembered you and your strength to fight thru this long journey of yours , and remembering your pretty smile and how you know that the disease might have taken over your body but certainly not your mind , spirit nor your soul . I am not in bad health but I had a not so nice day , and remembering your smile …
    ..brought back a smile to my long day !!

    Brigitte Estelle Gaudreault xx ☆★♡♥
    QUÉBEC, CANADA
    If you want to contact me , let me know if you want my email address !

    • Brigitte, how sweet and what a great feeling knowing I can help someone have a better day!

      We sing everything from classic rock, to current rock & pop, country and originals! Our band webpage is http://www.facebook.com/diddleyband or you can hear our music at http://www.reverbnation.com/DIDDLEY. I would have to say, it’s hard to pick a favorite song. Any of our originals are my most favorite!

      I’ve not been able to find your sister’s article, but I may be looking in the wrong place. I pray she’s doing well.

      It would be great to talk! Are you on facebook?

      Thanks and have a great day! I’m sorry yesterday was hard 🙂

      Kim

    • Hi Brigitte,

      Thank you so much for your message. What a great feeling to know that i can inspire someone just with a smile. I will have to remember that!

      My band sings everything from classick rock to current rock/pop and country with Elvis and Johnny Cash thrown in. I say we sing the playlists of our lives! We also have a lot of great originals and I’d have to say those are my favorite songs, they are our stories.

      Email me and I will give you the link to our band so you can hear us!

      I tried to find your sister’s page, and was unable to locate it.. One of my band members currently has nonhodgkins lymphoma and is undergoing chemo treatments. It’s scary and hard to watch someone you care go through something like this.

      I’d love to keep in touch. Yes, please give me your email address 🙂

      Thanks again for the kind words of support!

      Kim

      • Bonjour Kim!!
        brigitte.gaudreault@gmail.com ♥♥♥♥ WITH PLEASURE !!!!!!! LOVE CASH AND PRESLEY !
        My sister on facebook Diane Gaudreault …… You are both welcome to contact her she is a sweetheart !!

        … and her story is under Lymphoma stories but they wrote it under BRIGITTE ESTELLE FIGHTS LIKE A GIRL FOR HER SISTER , in power stories , October 2014 ,when you see your pretty photo my sisters is a few after yours and she has a black cap on and her hair is in her face blown by the wind ! I knew it , you may have Sarcoidosis but it does not have you , your smile is magical !!
        FIGHT LIKE A “TIGRESS” GIRL
        I must admit I am sooo glad you want to contact , with love from Québec Canada
        Brigitte Estelle xx

      • hi kim,

        My name is Diane Gaudreault Brigitte sister who has non Hodgkin lymphoma stage 3 and yes its scary .. but life is so important to wake up to each day and be grateful at that..
        I thank my lovely sister for putting up my story as I was not aware of this and glad she did as I get to communicate with pple all over the world..

        Hope your friend will be ok unfortunately lymphomas are not normally operable and curable but controlled by treatments.. I have a long journey ahead of me but its so vital to be positive and strong not to give up at all…

        Cheers to you and hope you have good health to come in the near future 🙂
        Take care of yourself

        • Hi Diane, thanks for sharing your brave fight. It is very important to be thankful every single day! Keep fighting and take care, Kim

  6. http://www.fightlikeagirlclub.com/2014/10/brigitte-estelles-fight-like-a-girl-story-non-hodgkins-lymphoma/#.VGbUwa1yZoM

    there you go Kim !! Diane’s pretty picture and her story , we all like to connect !
    Hugs from Canada, Québec
    Brigitte Estelle xxxx
    (Diane wrote to you)

  7. I love you mama kim! I’m so proud of how brave you are, and the fact that you fight through it and give to so many others, whether its the NUMEROUS charity works you participate in or just the soul healing music you share with the world. We <3 You!

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