ALS Won Today

I absolutely hate this fucking disease! Today I’m speaking for myself and maybe some other people that have this dreadful disease. Today my Rosemary-colored glasses are nowhere to be found.

This disease sucks the life right out of our bodies at a very slow pace and only the tough or the lucky ones weather the storm, but only temporarily. It strips us of the use of our arms, legs and neck muscles and then, as if that’s not enough, it takes our voices and our ability to swallow away.

Ironically, ALS doesn’t mess with our minds so we are fully aware of everything that’s happening to us. But then again being fully aware can be one of my worst enemies so I try to calm it with my own problem-solving tactics and most of the time they work but today they aren’t.

Stay tuned for tomorrow because I should have a much happier post because I am one of the lucky ones.

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28 thoughts on “ALS Won Today

  1. Thank you for expressing all frustration/ anger/ alarm/ disappointment/ exhaustion!! It would not be “normal” if you didn’t express your feelings. Anger helps get that helpless feeling out-in-the-open! Keep on fighting!! You have such great support from your wonderful family and a multitude of friends who keep cheering you on. We love you and keep you in our prayers and thoughts!!
    Ted & Phyllis

  2. You are so true ALS DOES FRIGGIN SUCK!!!!!!! AND IT ALWAYS WILL
    but you have already won this journey because

    God does have your back……really HE does

    YOU is KIND
    YOU is SMART
    YOU is IMPORTANT

  3. First of all, I love you Rosemary. I agree with every post your friends and family have expressed. Now if I may share my daily devotional, it is as if it was meant for your yucky day: No Matter What your circumstances may be, you can find peace in my presence. On some days joy and peace are generously strewn along your life-path, glistening in the sunlight. On days like that, being content is as simple as breathing the next breath or taking the next step. Other days are overcast and gloomy; you feel the strain of the journey, which seems endless. Dull gray rocks greet your gaze and cause your feet to ache. Yet peace is still attainable. Search for it as for hidden treasure.
    Begin by remembering that I have created this day; it is not a chance occurrence. Recall that I am present with you whether you sense my Presence or not. Then, start talking with me about whatever is on your mind. Rejoice in the fact that I understand you perfectly, and I know exactly what you are experiencing. As you continue communicating with me, your mood will gradually lighten. Awareness of My marvelous Companionship can infuse peace into the grayest day. Psalm 21:6 proverbs 2:4
    In closing, no apologies needed.

  4. ROSEMARY, LOVE YOU SO MUCH, YOU KNOW YOU CAN SAY ANYTHING AROUND YOUR FRIENDS, POSITIVE OR NEGATIVE, YOU ARE ALLOWED, BUT I HAD TO READ IT TWICE, BECAUSE I HAVE NEVER HEARD YOU SAY (fuck), LOL, I HAVE BEEN YOUR FRIEND FOREVER, TAKE CARE, LOVEYOU AND YOUR FAMILY.

  5. Rosemary we all think we have bad effing days and don’t have near the struggles you are going through. You my friend are entitled. You have touched so many lives by sharing your life every day…the good and now the bad. I pray that tomorrow will be a better day for you. My cousin had ALS and I saw him go through everything you are going through. Your positive attitude never ceases to amaze me. (((Hugs))) Sheila

  6. Rosemary, thank you for today’s post. You are an honest person and if every single one of your posts were happy ones. many others may wonder if you are not really telling it like it is…all of it…the good the bad & the ugly. There is no need to apologize for being truthful, You have given so much joy, so much love, etc. to others and you will never know all of the lives you have touched in a very positive & loving way!! (a ripple effect-that will continue on & on) and a reminder to all of us..that we never know what tomorrow will bring. As you know, having a positive attitude and surrounding yourself with positive & supportive people is wonderful!! It is good for every single person no matter what their circumstances in life may be or what they are going through. Your honesty is refreshing and I know there are many, many other people who feel the same way you do today. You would not be human if you did not express your frustration ,your anger at times, the hurt you sometimes feel, the fear that you face some days. So thank you for sharing your joy, your laughter, , your family, your adventures, your sunny out look on life… but also for sharing the bad days as well as the good. I have so much respect for you. You have been in my prayers for quite some time & will continue to be (as well as your family.. your illness is hard on your family, your caretakers & your friends as well– so prayers need to be offered up for all of them too).You are truly Blessed with an amazing, loving, supportive family & a generous group of true friends. Peace be with you. Debbie

  7. Dear Rosemary, So sad to read your post but I know every word is true. My mother had ALS and felt just exactly how you are feeling. Hopefully and prayerfully tomorrow will be a better day and you can somehow cope one day at a time. Our thoughts and prayers are with you and your family. Very Sincerely, Pat & Stub

    Sent from my iPad

    >

  8. You are right up there with Jesus on the cross. Not many can say that throughout their entire lives. I’m not sure He said the f word, but, He certainly felt helpless and doomed. Join with Him. He understands. Liz

  9. Rosemary, many prayers for you. Our family called ALS this “damn disease” one of my mom’s friends even embroidered it on a towel for her. I watched as this disease robbed my mom of everything you stated in your post! I remember the up days and down days my mom had too.
    On a different note, two weekends ago two of my sisters and a brother in law ran the Chicago Marathan for team ALS. They ran it in memory of my mom and in memory and honor of others just like you. Their team of 4 people raised over $20,000 for ALS. Some day there will be a cure!! I continue to keep you and my family in my prayers! Thank you so much for sharing you good and bad days with me!!
    Jen Menefee

  10. I am only able to say I am so sorry Rosemary. You always are so ahead of me in conversation and remember and ask such pertinent questions. It is as though you have always carried cue cards or have always known what to say or ask. It is evident to everyone ~ I could give you tons of examples that the conversation is so well engaged I thought even more than ever for you.I am just letting you know that I hope tomorrow is better. You remain in my thoughts and prayers. Keep my Mom in yours as she broke her hip about a week ago. See you soon. Deborah and Adam are coming in for Christmas. His first cold Christmas ~~ let it snow! I believe Randall and Lauren staying in Florida. After leaving New York I am unable to imagine why. Ha.

  11. Dear Rosemary,

    You are certainly entitled to feel that way and I’m sure there are many people that would have felt and said this before you had. I can only imagine that you speak for many many others. today I wish I had the perfect thing to say to make you feel better but I know I don’t.
    please no that you are never forgotten aboutand loved right where you’re at every single day… all day long. I send you my love and a big hug from someone who feels very humbled by you.

    Lots of love,

    Bonnie

  12. I do not know you, but I can relate to your story. My dad has ALS and it is sucking the life out of him and he too is one of the lucky ones. I read your posts and continue to pray for you and your family. ALS did not win and will not win as long as people like you continue to fight with courage. :):)

  13. Rosemary,

    You do not know me (I am Dr. Joe’s aunt Mary), but I follow some of your posts. You are in my thoughts and prayers as you struggle through your illness. I have taken the liberty of adding you to the Prayer Chain of the St. Michael Parish in Remus, MI.

    Mary Salisz

  14. You win everyday you live. You’ll win when you’re dying because dying is just another step in life.

    You are a wonderful and honest woman.

    And you said fucking. That made my day.

  15. While you are going through all of this, you still consider yourself one of the lucky ones. Not even you can have “Rosemary colored glasses” on all the time. I pray for you every day. I sincerely hope that if I ever get any kind of disease I can be just half as brave as you!
    I hope tomorrow is a better day for you.

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