How to be positive and happy with Charcot Marie tooth disease
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Note From Lainie:

There are many amazing people living with invisible physical disabilities who follow the Trend-Able social media pages who inspire me and others to live our best lives. One of these individuals is Tina Trahan. Tina made a comment a few months ago on one of my Facebook page posts that sparked my curiosity and prompted me to private message her for additional info. After hearing Tina’s unbelievable story, I was blown away as it reads like both the best and worst Hallmark Christmas movie ever. Tina is a true warrior and her resilience and positivity can serve as a reminder to us all to be grateful for our here and now.

WHY I’M GRATEFUL TO HAVE CHARCOT MARIE TOOTH DISEASE

December 21, 2015 is my CMT diagnosis day…. I currently have significant muscle atrophy in my calves, lower arms, and hands, muscle fasciculations throughout my body, I have bi-lateral foot drop, my toes no longer support my body and are painfully beginning to claw, and I am currently on my second set of AFO’s which are cumbersome and incredibly uncomfortable. I am grateful for this disease and I was grateful for this disease on diagnosis day. Not grateful in the sense that I wake up every morning to Sunshine and birds singing celebrating the fact that I have a chronic illness but grateful that I am here and GET to wake up every morning. Today, I am stronger both physically, mentally, and spiritually than I was 3 years ago prior to my CMT diagnosis.

Here’s my story…In 2015, I had been working as an admissions coordinator for a skilled nursing facility. I enjoyed my job for the most part, was good at what I did, I worked very hard, long hours and gave it my ALL. Unfortunately, My ALL came at a cost…my health. I was experiencing severe anxiety, heart palpitations, hot flashes, muscle spasms, Migraine headaches, loss of balance, I could no longer wear heels which had become my staple, I was beginning to walk slower with a funny gait, was no longer able to run or jump, and the stress in my neck was so severe that I bent the acupuncturist’s needles and no amount of physical therapy could give me relief. During this time, I was seeing a Rheumatologist who was unable to diagnose me and eventually referred me to a neurologist. I knew that this amount of stress was not healthy for my body and I needed to change my lifestyle. I no longer wanted to work to live nor did I want to live to work. I had a beautiful new Grand baby that I missed terribly and a neglected husband and family so I did what any sane person would do…..I quit my career and fulfilled my life-long dream of owning a coffee shop.

March 1, 2015, I bought a little coffee shop and having absolutely zero experience as a business owner or even a barista…I once again put my ALL into this dream only this time knowing that this was what I was meant to do and that my life purpose was finally going to be fulfilled. This was our family business run by my oldest daughter and myself as my Grand baby greeted customers and slept to the lullaby of blenders, coffee grinders, and steamers. I can honestly say that Coffee was my passion…long before I even bought my shop I knew I was destined to own a coffee shop! I didn’t mind waking at 3:00am and working sometimes until 7:00pm…I LOVED meeting the people in our community, fundraising for local causes, meeting new people from all over the world and hearing their stories of where they had been, where they were going, and what brought them to our little town. I created friendships with strangers who just needed someone to talk to or a listening ear and bonded with customers through laughter and even sometimes tears. Every morning I prayed over my shop before I opened and put out what I called my “Whiteboard of affirmation” with an encouraging quote and a fun fact….little did I know that my customers would be the ones encouraging me and lifting my spirits after a devastating diagnosis.

May 2015 (I don’t even know the specific date)…I was told by my second neurologist that I have Amyotrophic Lateral Sclerosis, ALS for short and also known as Lou Gehrig’s disease. I knew of this disease because my husband who is a Police Officer had just completed the “Ice bucket challenge” (Just so happens May is ALS awareness month). Let me just say that I was and still am a believer in God… I had been told on many occasions that things happen for a reason and God will never give you more than you can handle. I knew God as my personal savior, I felt the presence of God’s Holy Spirit, I knew that Jesus died on the cross for my sins, but I did not understand the reason I was chosen to be the carrier of this disease. God got this one wrong, he gave me more than I could handle. My husband and I left the Neurologist and we just sat in the parking lot while I cried out… “Give me Cancer, at least with cancer there’s a chance of survival!”, there was zero chance with this diagnosis.

Here’s the thing…When you are a business owner you do not have paid time off or the luxury of calling in dying so after two full days in bed I decided that I had a coffee shop to run and customers, who as trivial as it may seem, needed their coffee! Little did they know….I needed them as well! If there were an Oscar for Best Fake Performance EVER, It would have been awarded to me because I put on an excellent performance of bravery telling my customers, family and friends that I was going to beat this knowing full well that nobody in the history of ALS had ever beaten this life altering disease! On the outside I was the epitome of positivity, I was a warrior! However; on the inside, I was not. I was vulnerable, scared, weak, hopeless, sad, mad…

Here’s what happened to me during the months after this diagnosis…..I died. I died physically, I died mentally, and I died spiritually a little quicker and a little more each day. I was physically, mentally, and spiritually drained and I had given up. At this point, I knew It was time to sell my Coffee Shop.

October 1, 2015 my dream was sold to someone else and I went home and waited for my body to betray me. With what little strength I had left I cuddled with my Grand daughter, I read her books, we took naps together, I wrote her Love letters and hid them in various books and places for her to find after I’m gone and I also cried. A LOT. In private, on the floor behind my locked bathroom door.

December 21, 2015, almost 8 months post ALS diagnosis…I met with another Neurologist, an ALS specialist through the prompting of an old supervisor whose husband was in the end stages of ALS and had been receiving excellent care via this specialist. After all, If my destiny was to succumb to this disease, I may as well have the best care. That is when I received the best Christmas Gift ever…I was told that I did NOT have ALS. What she thought that I had was Charcot Marie Tooth disease which is still disabling however; it is slow progressing and is not a death sentence. Ok. Wait. What?!!!!

Here is what I’ve not shared…I turned 40 on May 9, 2009 and so far in my 40’s I have experienced the death of my 20 year old nephew to heroin, a daughter who was falsely accused of fat shaming which later, after going viral and the media frenzy nearly tore our family apart, was retracted by my daughters accuser. My other daughter’s boyfriend (now Ex) of 7 years went to prison after having an inappropriate on-line relationship with a minor, I was diagnosed with Autoimmune disease while working in a hostile work environment which was the start of my body’s deterioration, my Dad committed suicide in my family home (my husband and I found him), my Mom nearly lost our family home 2 years after my Dad’s suicide, we were scammed by not one, but two contractors who were suppose to give my mother her dream kitchen and I have just recently decided that it is not in my character or worth my time and energy to fight in small claims, and my siblings no longer speak to each other. Oh, and also….my husband of 30 years and I have been separated since May of this year.

Here is what I’ve learned….This past decade of my life sucked, I really can’t put it any other way. My 40’s were the worst…tragedy, secrecy, guilt, negativity, fake positivity, disappointment and shame took it’s toll on my body and was turning me into an ugly person. I share this not because I’m seeking sympathy but because sometimes seasons in life just suck. Sh*& happens and life drags you down into a dark, lonely, abyss of despair but you are equipped with free will and you have choices…You can kick it’s @$$ and come out a warrior or you can be the victim of circumstance. So I have Charcot Marie Tooth Disease or maybe some other type of neuromuscular disease….it’s not ALS. Yes, it’s robbing me of a certain quality of life I had dreamt of but it is not robbing me of the ability to create quality in the life I have. I can still dream, I can still live, I can still love, and most importantly…I can. It is with the guiding grace of God’s Holy Spirit that I can look back on my life and my 40’s and be grateful for what I went through because it brought me to who I am today. Life lessons are just that….Lessons learned in life, sometimes the hard way and sometimes it even takes a decade or more. However; What a sweet victory when you can look back and know that although you may have a scar or twenty, you have prevailed and become a better, stronger, version of yourself. I entered into my 40’s on a negative note of reluctance choosing to co-exist within the realm of ugly bitterness and despair but with some deep internal soul searching, weekly therapy (Praise baby Jesus for Therapists), and healthy maintenance I vow to exit my 40’s on May 9, 2019 and enter into this new decade of my life with positivity, enthusiasm and the highest soprano note of gratitude…Here’s to the melody of a life lived to the fullest…may it turn into a beautiful symphony!!!

God Bless,

Tina Trahan


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37 Comments

  1. Wow! Thanks for sharing your story. I love your outlook on life even with all of the tragedy. I am praying for a great 50’s for you!!

    • Thank you so much for taking the time to leave me a comment Cheryl and I always appreciate the prayers!! 50 is gonna be fabulous, I AM SO READY!!!

    • I am so happy you are inspired by my story Cyndi… I am ALWAYS a work in progress but a positive attitude is the key to achieving my daily work goals and how amazing is it that I get to wake up every morning with a whole new set of goals to work on?!!!! Thanks for taking the time to bless me with your comment.

  2. Your testimony was so uplifting & inspiring I have peripheral neuropathy in my hands & was diagnosed in August of this year & im not a diabetic on occasion I Catch myself feeling sad for myself but I quickly bring myself out of it. I too believe in the Lord Jesus Christ. I am 61 yrs old. Thank You Soo much for Testimony & Continue to remain Strong & Confident.

    • Deborah!!! Thank you so much for taking the time out of your day to bless me, I am honored that you found my testimony inspiring and uplifting. Not only are we Sisters in Christ but also Peripheral Neuropathy Sisters and I Love that our Lord and savior crossed our paths today❤️ Also, It’s okay to be sad on occasion about the struggles we Sisters and brothers go through just know that you are not alone in this fight…not only do we have each other but we also have our Lord to lean on when we just need a minute. I promise to remain strong and confident as long as you do as well!

      • Another NP sister here. The last several years have been challenging in many ways, but thanks to warriors like you Tina, I keep on keeping on, and I am sincerely grateful for my life and its many blessings. You are a truly a Victor, not a victim, and your attitude inspires me to celebrate life every day, finding treasures in the little, “ordinary” things. Sending you love, and may God’s angels surround you and comfort you, always! 💕

        • Linda,

          I am so Thankful for the blessings I’ve received from sisters like you who take time out of your day to write such a beautiful, heartfelt responses. So often we think we are alone in our struggles and then God brings people into our lives who lift our spirits while also enduring struggles of their own, such a beautiful thing! Here is to living life to the fullest with kindness, compassion, and Character!! Blessings to you my NP sister❤️

          Your Sister in Christ,
          Tina

          Sent from my iPhone

        • Tina, this turned up on my Facebook page today, and I immediately thought of you! 💕

          The Way You Carry Your Pain

          And more
          than anything else
          in the world
          I admire the way
          you carry your pain,
          even the air
          around you stills,
          humbled by
          your bravery
          and your grace.
          (Nikita Gill)

  3. I’m always amazed at other people’s stories. CMT sucks, but there are other things that are so. much. worse. I’m so happy to hear you’re in a good phase now.

    • Thank you for reading my CMT story and leaving me a comment Lotte!! CMT is no joy ride but given the alternative, I’ll take this ride any day. Life is good….Carpe Diem❤️

  4. Thank you sharing, it’s always good to hear each other’s journey with our silent friend sitting on our shoulder or tripping us up. You should write more a lovely read, although I understand and hear the things that have befallen you it made me smile.
    I truly hope your fifties are the most exciting inspiring and happy decade you have had so far.
    Thanks again Dave

    • Thank You Dave, it is my pleasure to share my journey with you. I appreciate that you took time to read my story and that it made you smile…it is after all a story of victory and overcoming life’s obstacles🤗 Fifty will be AMAZING!!!

  5. Inspirational and beautifully written story, Tina! I know I’ll remember your words next time I’m having a pity party about the things I can no longer do because of CMT. Thank you for bravely and graciously sharing your very personal story.

    • Joy,
      It is absolutely my pleasure to share my story with you and it will bring me great joy (pun not intended) if my words lift your spirits when life gets difficult and it will get difficult at times but you will be just fine!!! ❤️ and blessings.

  6. Tina it’s Angie.. As I read this sitting in my now coffee shop in Prineville Oregon I cried in sadness and happiness for you!! I talked to you everyday at 715 am for approximately ten years. I knew you were one of the strongest women I would ever know and I was correct!! Girl here’s to our 50’s they will be the best yet!! Love and hugs

    • ANGIE!!! I sure do miss seeing you every day, nothing like coffee therapy! One if these days soon I will surprise you with a visit, I promise. Yes, club 50 is going to be amazing…looking forward to it!!!

  7. Tina,
    Thank you for sharing . I have a similar story… I am a nurse midwife and had worked a grueling and stressful schedule, but I had always been so strong and healthy I missed the warning symptoms!! I have lower body weakness , muscle atrophy, bilateral foot drop, muscle fasciculations… yes they thought I had ALS … the most horrifying thing ever.. I know your pain firsthand . I was eventually diagnosed with peripheral neuropathy secondary to Lyme , mold , and petrochemical toxicity . I am finally under the care of an amazing doctor and am in the process of learning how to walk again. Thank you for reminding me of the blessing in life I still have, for believing in the power of a loving god, and empowering to begin rebuilding my life! You are amazing !! Thank you from the bottom of my heart – and blessings to you for a wonderful 2019!

    • Laurie,
      Your story is so similar to mine, I can’t believe it! I too have Peripheral Neuropathy and have been tested for Lyme disease (4 times), mold, and chemical toxicity. In looking back isn’t it interesting how all the warning signs were there but we just didn’t take the time to listen to them because we were so focused on everything else?!! That is one of the things I appreciate about God’s loving presence in my life…he gave me ample opportunity to take care of his temple and I just kept ignoring his signs but now is my time and this temple has no choice but to be taken care of. I thought that if I ate healthy and worked out regularly (ie: excessively) that I was taking care of myself. Now I know that taking care of my spiritual, emotional, and mental health and rest is just as/ if not more important than physical activity. So my sister in Christ…Great things are in your future and from the bottom of MY heart I am grateful to you for your response because you too have lifted my spirits and find comfort in knowing that I have inspired you to not give up! Blessings to you, It’s gonna be a great decade!!!❤️

  8. I’m so happy to know your story, Tina!! You are such a strong person and it’s incredibly inspiring that you have been able to remain positive and lean on your faith even while you’ve been through so much! I’m hoping for a fantastic new decade for you! ❤️

    • Thank you Pam!!! It took me almost a decade and lots of bumps and bruises resisting God’s full presence in my life but what a relief it is allowing him to take the wheel and trusting where he is taking me in this life! It truly is going to be an AMAZING decade to come!!

  9. Your story is truly inspiring. I have a 3 year old daughter who fights the daily struggle of being a CMT patient and to see someone living their life the way you are gives me hope that maybe her life can be just as wonderful. I hope you have a blessed 2019

    • My grand daughter is also 3 years old and my heart aches for you as a mother. I know this has to be difficult for you but your little has just as much opportunity to make a difference in life as anybody else, maybe even more so because of her limitations. There is power in a positive mindset and just keep loving that baby girl and she will do miraculous things❤️

  10. Wow, so glad you have the great attitude you have. I knew you had to be a strong person when you worked for Mr. Williamson. Hope and pray for a great 2019. Be strong!

    • Thank you so much Chris! Losing Steve was also a terrible loss in my 40’s- He truly was my favorite “boss” (we let him think he was the boss anyway) ever! You are always in my prayers and I will stay strong if you do!!❤️

  11. As I sit here and read this tears streaming down my face, made me remember me on the day I first met you!! I was young had a new baby, was so scared to be in a new town. You took me In an became someone I looked up to, somone I could laugh with, cry with,. You are the strongest woman I know and you taught me how to be strong! This is such an amazing story of you being the strong woman that you are! It takes so much courage to share this!! I am so proud to be your friend!!! 50 sure looks good on you.❤️❤️

  12. Thank you 4 being brave to share your life’s pathway & In the end give a light to everyone’s darkest moments. If we can come through the tunnel with hope, love, life and gratitude I believe we are blessed. It is not the moment that defines us but the journey. Truly your journey is turning you into a bright spark like a star in a blackened sky. From 1 Cmtwarrior to another you will and can conquer what you put your mind too.

  13. Thank you 4 being brave to share your life’s pathway & In the end give a light to everyone’s darkest moments. If we can come through the tunnel with hope, love, life and gratitude I believe we are blessed. It is not the moment that defines us but the journey. Truly your journey is turning you into a bright spark like a star in a blackened sky. From 1 Cmtwarrior to another you will and can conquer!

    • Beautifully spoken Christina and so very true!! Thank you for your kind words and yes indeed, we can and will conquer!❤️

  14. Tina – Your story is inspiring. So much of your story resonated with me. I just turned 50 and my forties have been a challenge also. I too thought that I may have had ALS a few years ago. Muscle twitching, calf atrophy, leg weakness, and panic attacks were the norm for a while. I’m almost 3 years into dealing with the PN and it’s still something at the forefront of my being every day. My doctors think I have a variation of CMT but have not been able to confirm it with DNA analysis – so my case remains “idiopathic”. I’m doing my best to focus on the positives and enjoy the fact that I’m still here. I haven’t read anything since I started researching and processing what’s going on with me that was as impactful as what you shared. Thank you! I wish a happy and healthy 2019 to you!

    Jon

    • Jon,
      Thank you so much for your kind words and for taking the time to share your story…so many similarities to mine. My Neurologist also believes i have some variant of CMT but DNA results came up inconclusive however; all of my symptoms and other testing points to CMT…Also, idiopathic. According to a Genetic scientist I spoke with recently…Research has come a long way but there is still so much to learn about CMT and the different variants. It’s pretty exciting to see how far they’ve come in such a short period of time and the clinical trials give hope that they could be close to a breakthrough at any time! Just got to keep positive and believe that there is a higher power at the helm!
      I am absolutely flattered that you found inspiration in my story and am equally inspired by you and your kind words. Keep fighting this good fight and know that you’ve got a tribe fighting with you! God Bless!

  15. I, too, have a psuedo diagnosis of ALS. After 30 years, it’s obviously not what I really have, but it is currently the closest match the drs can make. Hang tough!

    • Ida,
      30 years?!!! Wow, that’s incredible and clearly not ALS- Praise Jesus! Sure hasn’t been an easy 30 years living with the thought of ALS in the forefront of your mind, I’m sure! God Bless you for the Warrior that you are and you keeping hanging tough as well sweet lady❤️

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