Regrouping ~ It’s a Whoa is Me Moment

Last week, we traveled to John Hopkins Medicine Multiple Sclerosis Center for my annual appointment. We like their satellite office in Lutherville, MD, avoiding the traffic of their main location in Baltimore. Country bumpkin right here! Such a beautiful area located close to Towson. They even have upscale boutiques and restaurants right in the medical building. Smart business.

Research iowa.eduJohn Hopkins is known to be cutting-edge in the field of Neurology. In addition to treating MS patients, they are dedicated to ongoing research and conducting many clinical trials at their facility. Their common goal: 1) Find a cure for MS. 2) Find therapies to reverse and correct damage. Amen to that! Brilliant minds hard at work!

We were there for almost one hour. We both really like this doctor. He takes his time and explains his recommendations. That’s what I’m talking about! So grateful my husband was there to ask additional questions. I was zoning out at times as my mind was focusing on what he just said. I wanted to break out my computer to research that particular study and his current recommendations! Some things just don’t change. Advocacy is a good thing though.

Nearly thirteen years ago, when my disease was at its worse, I was taking Avonex to control my MS. Needless to say, I continued to have relapse after relapse and ultimately had a major attack which left me with significant lesion load, both of the brain and spine.  This was so evident when he compared my MRIs. I always knew what the lesion load in my spine could mean or not down the road. That’s the uncertainty of MS. Obviously, Avonex was not controlling my disease. I was switched to Rebif* in 2002 and have had no new lesions and relapses ever since. PTL!!!

Research1Recently, it’s been an interesting and sometimes tough road to manage. The past month has brought about new symptoms and challenges. As suspected, the lesions in my spine have decided to create trouble, challenging me both physically, emotionally and spiritually. Before writing this blog, I needed to take time to process these developments and regroup if you will.

In our home, my regrouping is called the “Whoa is Me” moment. I have my pity party, cry, get mad, have my private conversations with the Lord and yes, endure the comforting words from my husband. He’s so patient with me! After all is said and done, time to get back to being positive! Survival for me.

I will share my neuros current findings and recommendations in a future post. I have processed and accepted (again) MS is unpredictable, debilitating and quite frankly, frustrating disease. However, I will not allow MS to define me, consume my every thought or take away my joy! I chose to remain positive, to allow Him to strengthen me, teach me and give me the courage to persevere…He’s not done with me yet!

“Count Your Blessings”

*This is my own personal experience while administering DMD’s Avonex and Rebif.  All DMD’s effect patients differently.  Please contact your physician with any questions!

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22 Comments

  1. I’m so sorry things have changed recently. I know the struggles faced when our bodies betray us. Fortunately God does not, no matter the shape our physical bodies are in. I handle things very much the same way. I have to have my time to process, and once I’m through that phase, then it’s time to think of the best way to tackle the latest challenge. And you are so right, God is not done with you. That truth, is one of the biggest things that keeps me pushing forward. My prayers are with you.

    • Thank you for your kind words and prayers. I completely agree with the need to process and move forward trusting God has greater things planned then I could ever imagine! Keep up the great work and your positive attitude. Refreshing! 🙂

  2. I’m sorry to hear that you are experiencing new and worsening stuff. I’ve been a bit immersed in a woe is me couple of months too (though hopefully not as evident outwardly as it feels). I keep hoping that if the weather ever warms up and the rain stops, some of the more painful symptoms will improve, Best wishes to you.

    • Thank you Heidi for your words of encouragement! We both are fully aware of the unpredictability MS brings but chose to move forward and enjoy the life God has so graciously provided. Sometimes differently, but trusting He knows what He’s doing. I pray the weather clears and the sunshine brings warmth and comfort your way! Keep up the great work! Enjoy your day! 🙂

  3. Cathy,

    Have you ever tried reiki? I have a high school girlfriend who put her MS in remission with 100% whole food diet and reiki. She is symptom free and has a poor prognosis a few years back.

    Just a thought, sending LOVE! Paula

    • Oops, HAD a poor prognosis.

      • you’re a good friend!

    • Thank you for your kind message and ideas, Paula. I completely agree with Reiki helping many with MS along with a whole food diet. I shared with my massage therapist all about you last month. She smiled. She too does Reiki and is a huge proponent of organic, gluten free diet. (http://www.creatingbalancewithin.net/) Unfortunately, no benefits seen for me. You never know if you don’t try, right!?! Glad this was a good fit for your friend! 🙂 Thank you for reaching out and educating people like me! Have a great day!

  4. Cathy your my inspiration & my Angel & I admire you. Please don’t be so hard on yourself, you fight a great fight but it really is ok to have a whoa is me day!
    I think this disease is as much a physically debilitating as mentally. Please know & remember all the people you have helped, inspired and been the best friend, Angel and inspiration. You are in my prayers daily and we are so blessed to have our loving spouses & children to help us try our best everyday. Yes, MS has taken a lot off of us but your a strong beautiful woman, wife, mother. Keep up your chin, don’t be to hard on yourself, sometimes a good cry is what we all need from time to time. Please call me when you want to catch up & remember this is a bump. Love to you👼

    • Your post is very sweet Chris! From all our conversations, through all the obstacles faced, we both know and value the importance to process and accept our new norms. By doing so, we can move forward trusting He does know what He’s up to even when we’re not so sure or like what’s happening! Focusing on the positive with what we can do and what is possible. I’m thankful for our friendship and look forward to touching base! Love you girl. Hugs to you and the family!

  5. Stay positive no matter what! When we can smile, we win! 😉

    • Thank you for your kind message. The value of a simple smile is priceless. Not to mention your beautiful pics with your posts! Enjoy your day and the peace and serenity of your gardens! 🙂

  6. Catherine… While I know you remain as positive as you can, of course you have your ‘moments’ … hope you start to feel better soon… Diane

    • Thank you for your words of encouragement Diane! Moments for sure but always moving forward! Enjoy your day. They sun is a shining! 🙂

  7. I think it’s ok to be mad! But you will remain strong I know. Regrouping helps you to do that.

    • Thank you for your kind words of affirmation! Couldn’t agree with you more! Have a great day! 🙂

  8. I hear the smile in your words and know you will be well! It’s all about attitude and I love yours!

    • Your words are a ray of sunshine! Thank you for your encouragement! 🙂

  9. Susan Clark Denny

    Prayers, dear!

    • Thank you Susan! You never disappoint! 🙂

  10. And here we are, climbing downhill. Keep reaching up where we know our strength lies.

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