Embrace the Journey: This is Your Life

Connie, Penni and me ending a special weekend

This is your life, Judy Groff. See, it’s not so bad! You do fun stuff and look fairly independent. Looks like you’ve embraced MS. We acknowledge that you have noticeable issues but, you are functioning at a high level. I’m proud of you.

Yeah, but it’s taken over twenty years to figure out how best to keep functioning well. Just when I think I’ve got things where I want them, wham, I fall or something happens to throw me back. Who are you anyway? Why am I even talking to you?

Carrying on, trying to be independent

Good question! I’m the you that lurks deep in your mind and reminds you where you came from and who you are. It’s my job to give you tough love talks when you get down on yourself. You were a mess in the beginning.You felt bad and moved poorly. We had some serious talks back then.

Those early years were hard. Actually, learning to fill the syringe and give myself the shot got me going. That gave me control so I felt empowered. My turnaround started there. I need to feel in control and independent.

You are in a good place now. What do you think happened? You tried a lot of different things and never gave up trying. 

Meditation using singing bowl

I always thought I could improve my walking. I remember getting very frustrated and angry. I’d try something then vigilantly track improvement in how I moved or felt. I experimented with alternative therapies like meditation, massage, yoga, and gym exercise. I had fun with bike riding, until I had a bad fall. It must have been you I would talk to. You always remind me that I’m the one with the power to fix me. 

What fears and hopes were driving you during that time? 

I worried most about losing ability to exercise at all. I couldn’t run anymore and swimming had to be different. Tennis and biking required too much balance and coordination. Almost everything I did had to be modified. Walking has been the one exercise I am doing better now than in the beginning.

Hot yoga in our bathroom studio

What happened to prompt this change?

Several things started coming together. Bikram Hot Yoga was the catalyst that introduced me to new therapies like acupuncture and massage. 

Then I got adventurous and tried “juicing” and bone broth. I went all in at the gym and secured a physical trainer. To challenge my mind, I joined Toastmasters, started taking piano lessons and learning French on Duolingo. 

I started feeling better physically and had more energy. Slowly my walking has improved. With the guidance of my Physical Therapist, I am learning now to walk again (second go round).

Doing Job #1 prepares me to have fun

Sounds to me like you invest a lot in yourself. Do you ever feel guilty?

I do not. Taking care of me is Job #1. Mama had a plaque hanging in the  kitchen that said, “When Mama’s not happy, nobody’s happy.” When I’m tired or feel out of sorts, I’m grumpy. Family and friends want me to feel good. In fact, my favorite quote is, “When you look good, you feel good. When you feel good, you do good.” Yes, I give myself permission to invest in me.  

This is my life! I’m beginning to write the memoir about my journey. The blog posts will be incorporated. This is a story about my struggles and joys. It’s a story about making the best possible life with life as I know it. And finally, it about all the things I can still do albeit with help along the way. 

Readers, you inspire me and keep me going. Give me some feedback. Thank-you.

Embrace the Journey: Sickness Set-Back

Not sick here!

How can I completely lose a week? Did I wake up from a bad dream? Nothing happened. I cancelled everything. I had no ambition to do anything. It was an effort to force myself out for a short walk. Cooking? Not interested in eating, so why would I cook? Standing to “heat-up” a prepared dish is too much. Christmas decorations are still up? They can wait. Nothing bothers me. 

Seems like this new year started with the bug brigade in charge. The stomach bug went through our house. I heard about other bugs, especially respiratory ones bothering friends. It was a nasty end of year.

Toastmasters Betty and Jeanne

Stomach bug, you have beaten me down. I thought you were gone, but you slipped back. I know what you did. You waited till I was tired and weak. You tried to shift the blame onto MS, didn’t you? Maybe you’re a “wanna-be” lingering disease like Long Covid, lurking, lurking, lurking. You think you are winning? Ha! Not a chance. Not going to happen! 

For a moment,  I did let self pity creep in. I thought maybe you did rule earlier today. Then I rallied. Your bullying didn’t work. My good friend, Toastmaster presented an opportunity I couldn't resist. I was the Toastmaster for this first Friday after the holiday break. The only Speaker had to cancel. By Thursday, we had less than ten members coming.

Yea, I thought you would surely cancel the meeting given all the issues surfacing early this week. Usually, you think of Toastmasters as a “responsibility”. What gives? 

Toastmaster Zoom Meeting

Stomach bug, you’re just like MS. You think you can dictate results. You think I’ll let self pity and negativity in. You think I’ll become easy to manipulate and disinterested in life if you hang around long enough. You are so wrong! Ask MS if I have conceded! You can only rule briefly. Why? Because you can’t  begin to get into my mind. My mind and willpower will overpower anything you can throw at me.

Actually, I want to know why all of a sudden Toastmasters isn’t just a responsibility. What’s so special about them? 

What you don’t understand is they are part of my support team. They support me and I support them. This week I am Toastmaster of the week. That means I am responsible. It’s a challenge and I love a challenge. Starting this new year with a strong meeting is a must do.

You are stubborn! Why didn’t you just call it off due to sickness. Throw in the towel. I was a perfect excuse.

Selfie with Wendy at the Christmas Parade

You set a nice trap, but I won’t take the bait. Actually, you and your cohorts running around sickening people challenged me to be creative and have fun doing it. As it turns out, our group will be small, and in my plan, small is GOOD. Toastmasters are strong and will rise to the occasion. 

We are going to play a game. The theme is “Turn the Page”. I’ve asked each person coming to weave a tale about things left behind and visions for the new year. It’s an exercise in team building, speech crafting, and leadership. I’m looking forward to it.

Stomach bug, you slowed me down. You made me feel really yucky and weak. You tried your best to break my spirit.  I lost a week of good stuff! Therapy sessions, fun with family, exercise, and hot yoga had to wait. 

You won’t win. I’ve got your number. You will not get a negative toehold in my mind.

Grandson Loleh 

On a serious note, chronic illness and pain are debilitating on both body and mind. Having several strong support groups to keep the mind focused on others and positive things is important. There will be more set-backs, but the human spirit is resilient.

Family and friends carry us through the hard times. Let's all Turn the Page to a happy and productive New Year!

 

Embrace Your Destiny: Be Audacious

Doing yoga on a cruise

“Ms. Lucifer, we’ve been trying to get along for twenty years. You were the audacious one during the first half of our journey. You were bold. You ruled me completely. I’ll admit that you were ever present in my mind. I didn’t like you then. Now, I feel like I have come to terms with you in the second half of our acquaintance. Now, I am being audacious in dealing with you. Don't you like this cool word, "audacious" that I learned in Toastmasters? Toastmasters stimulates my audacity. I’m definitely keeping you at bay.”

Ms. Lucifer was quick to note some setbacks. She said, “As I I recall, being audacious has gotten you into trouble. Aren’t I right? 

Embrace Your Destiny: What Am I Doing?

 

Memoir Group Zoom Meeting

"Let’s see. This piece is going to be about memoir group. Our zoom meeting is tomorrow and I can’t go empty handed.Their feedback keeps me going.”

I have this conversation with myself often because I get confused. My purpose for doing memoir and blogging is to tell my Multiple Sclerosis story.

Embrace Your Destiny: Manage Yourself

In the Arizona desert, October 2019

January  marks twenty years I have been managing Multiple Sclerosis. The first fourteen years I was adjusting to this new me. I learned what to expect from the disease physically, mentally, emotionally and physiologically. It’s a very complex disease. I have the Primary Progressive type of MS.

My biggest issues have always been physical with spasticity, balance and irregular gait being most troublesome. The mental issues are not as obvious. Reflecting back, I had them. I had plenty of physiological issues too. All the symptoms are insidious in that they creep up from nowhere. For example, in the past three years, I noticed that my core has been slowly going to mush.

Toastmasters is part of my cognitive therapy. I’ve competed in the International Speech Contest several times. After much deliberation I decided to compete again. I have something to say about living with and managing a chronic illness. I can use this platform to communicate that you can manage MS and enjoy doing it. In the past five years, slowly but surely, I am improving. First I had to get out of my comfort zone. I tried new therapies and I continued to work hard. 

Embrace Your Destiny: Track Your Progress

The aging process plus the diagnosis of Primary Progressive MS is a recipe for change in the wrong direction. According to data I have read, I should be on a slow, steady decline. I refuse to accept that fate. The only way I know to determine if I’m going forward or backward on this journey is to document specific tasks and track them from year to year. Since I do feel and walk better than I did twenty years ago, I think I am going forward. 

Looking back over this past year, I can say these things about my body and how it works better than last year at this time:

• My posture is better especially when I am tired.
• I can get up off the floor with more control and agility.
• I do many yoga postures better.
• I get dressed quicker because I step into my pants with greater ease.
• My walking is more fluid with less limp when I get fatigued.
• Getting in and out of the car is easier and doesn't hurt as much.
• Standing in the kitchen while cooking doesn't make my legs feel fatigued.

Plank for 1 minute

You may wonder, what has contributed to these changes. Good question. From all I have read about MS and other neurological diseases, the mind and body work most effectively when the process is coordinated, consistent, intentional, focused on the right things and done mindfully. Two years ago I noticed that my yoga practice was improving but the strength I needed to get into and hold postures was lacking. That’s when I decided to go back to the gym and get a trainer. I believe the work with my new trainer, Evan Camby has taken my walking and overall strength to a better place. Together, the yoga and strength training have facilitated the specific improvements I listed.

My husband, Donnie says he has noticed a big improvement in my mental acuity. He say I process information faster, which is reflected in smoother, more fluid speech. Mental sharpness has been of concern to me from the beginning. This year I have noticed focus and concentration are improved. I was President of Four Seasons Toastmasters which gave me weekly practice in leading, initiating change, making impromptu speeches, coordinating and giving programs.  I believe I work as hard on this part of my journey as the physical and I believe I see results. Here are the activities I do regularly to work on my mental sharpness:

• Piano lessons and practice everyday.
• Puzzles work everyday; word puzzles, picture puzzles, math puzzles.
• Study and practice French everyday using the Duolingo free app on my phone.
• Attend Toastmasters every week to practice speaking and leadership.
• Plan and execute parties and other events.
• Memoir writing weekly.
• Accept speaking engagements. 

Physiologically, I feel great 90% of the time. Headaches are not a problem now. I may have one once a month and Ibuprofen takes care of it. My energy level is nice so that I can do most everything I plan everyday. I give credit to diet and exercise for these improvements It seems like the more I do, the more I feel like doing.

It’s been a while since I talked about diet. I still drink a 16 ounce juice once a day, courtesy of my juice lady Katie Flannagan and Green Heart Juice. I also make bone broth and consume a half cup of that everyday. The rest of my diet includes lots of vegetables, salads, canned tuna and salmon, beans of all kinds fixed all different ways, smoothie for breakfast, and nuts. I’m monitoring the effect of gluten, cheese and sugar on joint inflammation. Recently I have observed that certain postures in yoga are not fully available the morning after eating gluten and cheese. I am following principles from The Wahl Diet and others that incorporate whole foods and plant based foods.

I look at this journey with MS as a challenge to maintain an  an active lifestyle. This work is my job. I still have lots of things to improve. My goal is to stay healthy, mentally sharp, involved with life and learning and to keep improving. Yes, it takes time, planning and some dedication. That is okay with me. I’ll do whatever it takes as long as I see changes going in a positive direction instead of backward.

Embrace Your Destiny:Take Charge!

Working the Core

Today has been a typical Wednesday. Toastmasters  at 8:00 am, followed by workout at Gold's gym, followed by lunch, piano practice and left over chores. Everyday, I try to include elements of physical exercise and mental exercise. I practice piano and do puzzles for the mental exercise. Diet is also monitored. Everyday I try to consume a 16 ounce juice and a cup of bone broth. The rest of my diet will be mostly plant based. 

I have found this combination of practices helps improve my MS symptoms. Physically, I have good energy and low pain. That allows me to do more that I want to do. Mentally, I am quicker in decision making and less bothered by stress.   

Everybody is different and all forms of MS are different. However, I do think I'm on the right track with this approach. Brain& Life magazine, the MS research on the MS Society website, and medical magazines from Medicare and AARP all validate that these practices are good for anyone with a neurological issue or is simply dealing with the aging process.  Specifically, I'd like to tell you why I find investing time in Toastmasters and a personal trainer are valuable to my improvement.