Are You More Than Your Disease? Tell Us How in the #MoreThan Campaign

There's a new campaign in town that I'm very excited about. It's called #MoreThan and it's sponsored by the phenomenal website PatientsLikeMe whose mission is to put patients first by partnering with over 500,000 people who live with 2,700 conditions. That's extraordinary, don't you think?'

ALS * Bipolar disorder * Brain injury * Chronic Fatigue Syndrome/ME * Crohn's Disease * Depression * Diabetes * Epilepsy * Fibromyalgia * HIV/AIDS * IBS * Idiopathic pulmonary fibrosis * Lupus * Mood Conditions * Multiple Sclerosis * Organ Transplants * Parkinson's Disease * Psoriasis * PTSD * Pulmonary Fibrosis * Rare Diseases * RLS/WED * Ulcerative Colitis * and much more

The campaign is a unique way to showcase why we are so much more than our disease. We won't let illness define the incredible, beautiful people we are. We may live with some crazy symptoms but we're also mothers and fathers, sisters and brothers, daughters and sons, friends, coworkers, artists, engineers, mechanics, lawyers, athletes, teachers, nurses, entrepreneurs......

You can read my story on why I'm #MoreThan my MS at PatientsLikeMe.

[ctt template="5" link="59Ayk" via="no" ] Are you more than your disease? Join the #MoreThan campaign Tell us why U ARE more @cathyches @patientslikeme[/ctt]

Take a look at this video to get a sense of the incredible people who are already part of the #MoreThan campaign.

“We cannot direct the wind but we can adjust the sails.” ~Author Unknown

Now it's your turn to join the campaign. It's simple. Follow the next three steps and you're done!

Together we are the answer!

Before you go I hope you take a look at why John is #MoreThanMS. I loved hearing him tell his sweet story on why he is so much more than his disease.

I hope you join this campaign. I can't wait to read why you are #MoreThan your illness.

How To Create A Brilliant List To Maintain A Brilliant Life

I can't imagine my 56th birthday being more brilliant. Spending an entire day in the company of my husband and son while having their undivided attention - no Sports Center, stock tickers, political arguments or social media - was something I was more than looking forward to.

In our family the birthday girl or boy chooses how they want to spend their special day. More times than not I've wanted to do something cultural in Manhattan. So I gave my husband a list of plays I wanted to see, and he and my son took care of the rest.

We went to the small theatre-in-the-round, the Barrow Street Theatre, to see the creative and interactive one-man show, "Every Brilliant Thing." The play is about a young boy growing up who does his best to distract his suicidal mother by creating a list of joyful things that make life worth living.

This hour-long play stars the charmingly funny Brit Jonny Donohoe who creates a character that is bright, funny and engaging, something that's not easy to do considering the subject at hand. Yet Donohoe handily succeeds.

As an emotionally damaged boy who never stops searching for a happier life, we, the audience, interact with the story according to the lines and roles Donohoe assigns us when we first take our seats. His poignant and honest depiction of how suicide affects a family makes us laugh and cry as we remain ever hopeful that both mother and son will survive intact.

(Not to give too much away, but our favorite brilliant thing on the character's list was, "Christopher Walken's voice....and hair." Ha!)

Like any dedicated blogger, as I sat and watched the play my mind began to race. How could I write about brilliant lists for my blog? Then it dawned on me: Wouldn't it be wonderful if everyone would create their own brilliant list? A list that would make them feel happy to write and joyful to read?

Your list will never be finished, because as we age and experience more and more life lessons, we add our positive experiences to our brilliant list. Just like the main character in the play, there are thousands and thousands of reasons why every brilliant thing we love - everything that makes our heart sing or brings a smile to our face - makes a positive difference in our lives.

So on days when you're having some self-doubt or perhaps feeling a little sad, you'll have your brilliant list to comfort you. It will serve as a reminder of the things that matter most - the simple joys that make life worthwhile.

Here are some things that are on my brilliant list. In the comments below I'd love to read what's on your brilliant list. Remember, there is no right or wrong. It's whatever feels brilliant to you!

The sound of my son's laughter.
Snuggling with my husband.
The look of Nirvana in our cat's eyes when I pet them.
Mozart's Flute and Harp Concerto.
The entire album of Carole King's Tapestry, Cat Stevens' Tea for the Tillerman, Frank Sinatra's In the Wee Small Hours and The Beatle's White Album.
The sound of the ocean.
Smelling the fragrance of peonies or roses.
The soft sound of Paul Desmond's alto saxophone in Take Five. And the entire brilliant song.
Any Cary Grant movie.
A good book that absorbs me so much I can't put it down.
Laughing with my girlfriends and talking about anything and everything.
The sound of crickets.
Receiving a handwritten note in the mail.
Spending time in a library or bookstore.
Animals that are rescued and adopted into forever loving homes.
Turner Classics Movie channel.
Butterflies.
A great massage.
The first velvety note of any Nat King Cole song.
Having no new lesions on my brain and spine.
The satisfaction of writing a good sentence, paragraph and post.
Helping others find what they need, or lending a compassionate ear.
The taste of homemade chocolate ice cream completely smothered with homemade hot fudge.
A beautiful sunset.
The first time I saw Paris, the taste of a croissant from any of their patisseries, and hanging out in Giverny and the Tuileries.
Any painting by Monet, Manet, Renoir, Pissaro, Seurat, Sisley, Morisot, Degas. Okay, it's hard to narrow it down.
Money earmarked for research to find cures for anything that is incurable.
The Peanuts characters.
Don Rickles. Johnny Carson. Together or separate.
Walter Huston singing September Song.
Everything in nature.
Being snowed in with my husband and son.
The smell of chocolate chip cookies fresh out of the oven.
Mr. Magoo's Christmas Carol and You're a Good Man, Charlie Brown.
The first time I saw Mary Poppins and The Sound of Music.
Knowing you made a difference in someone's life.
The lyrical voice of Joni Mitchell.
Taking a vacation. Where it's warm. With mountains. Or an ocean. Or both. Or a spa. Or moving where it's warm. With mountains. Or an ocean. Or both. Or a spa.
Buying a new pair of shoes that are comfortable yet attractive.
Doing a Downward Dog.
The smell of baby lotion.
The knowledge that the people I love are happy, healthy and doing what they love.
A peaceful world.

What's on your brilliant list?

Six Things I Want You To Know About Multiple Sclerosis And Me

As part of my personal mission as a writer and health advocate, I try to educate others on what it’s like to live with an invisible disease.

Caring for those with invisible illness like MS

Christine Miserandino's Spoon Theory (www.butyoudontlooksick.com):
Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities as much as one would measure the proper amount of spoons needed for an event or occasion, sometimes having an abundance, other times coming up short.

Because sometimes, when people can’t see your disease, they don’t believe you have one.

By shedding light on our everyday battles, I hope the information I provide is a catalyst for the compassion and tolerance that is necessary toward bridging an understanding gap.

Step back to make way for a better world.

How you can help someone with MS or other chronic illnesses

1. Don’t feel sorry for us, but do us a favor by learning more about MS. Then the next time we tell you we're tired or seem to often cancel plans, you’ll have a better understanding why. Learn more about MS here

2. We may not look sick, but our immune system tells a different story. So the next time we need to occupy a handicapped parking spot, first ask if our placard is registered before you begin shouting at us. We truly appreciate your concern. But we think you should treat a disabled person with the respect we deserve.

3. Practice compassion and tolerance whenever you see someone with a disability. Our road is a daily battle of maneuvering the challenges of life. The things able-bodied people take for granted, such as walking, talking, dressing, exercising, seeing, peeing, pooping and intimacy is considerably more difficult for people with disabilities.

4. Help us keep our self-respect intact. Imagine falling down in front of a crowd and people begin to whisper that you look drunk. Or you find yourself attending an event with friends but are unable to keep up with their fast pace. We don’t enjoy burdening others with our issues. But in our silence, we’d be comforted to know that you understand why our bodies are disobeying us, and that you’ll be willing to slow your pace down to help us feel better about ourselves.

5. Be patient. We are fearful of the next exacerbation (flare-up) that may wreak havoc on our bodies. So if you’re trying to make plans with us, and we seem to ask a lot of questions (how long will the event be, where is the nearest parking lot, is the venue accessible) please be mindful that there’s a reason why we’re asking so many questions. It’s not that we don’t want to see you; it’s simply that we need to take care of our MS.

6. We're often tired. I know you are too, but I doubt it’s the same kind of fatigue. Because when we're tired, it feels almost like we have a nasty case of the flu, only 1,000 times worse. Every part of our body cries out for a nap, and no matter where we are or what we're doing, we have to find a place to rest. So please understand why we may have to leave a party early or cut our visit short. In a perfect world we'd love to stay, but our brain is yelling at us to rest.

More MS Resources here

We'll make up for lost time the next time we get together. That's what we're telling our hearts.

Thank A Nurse This Week As We Celebrate National Nurses Week

This week is National Nurses Week (May 6 – May 12), and to honor these remarkably dedicated health professionals I’d like to take this opportunity to pay tribute to them for the difference they make in all of our lives.

The first nurse we learn about is Florence Nightingale, the founder of modern nursing, who came to prominence during the Crimean War when she began tending to wounded soldiers at night.

Today, nurses do so much more than tend to our physical needs. They care for our emotional ones as well by treating the whole person with compassion and a good ear. They not only see the patient's physical wounds, but they also see a human being with deeper needs.

In the world of today’s health care, that is no ordinary feat.

To a nurse the needs of the patient comes first despite their own grueling hours, daily physical exertion and the sharing of some traumatic events that would send anyone else to their knees.

Their goal is to make a difference in our lives.

Nurses comfort and heal us, whether nestling closely to a dying patient, hugging a scared child or listening to our worries.

Aside from the nurses who’ve cared for my own health needs, I was blessed to work with many talented ones while working at IOMSN (International Organization of Multiple Sclerosis Nurses.) Let me introduce you to a few:

Dorothea (“Dottie”) Pfohl: Clinical Coordinator of The Comprehensive MS Center of the Department of Neurology at The University of Pennsylvania Health System.

Why do I love Dottie? Aside from being my Words with Friends warrior, she recently said this to me:

“My signature line is that I am proud to be part of a group of nurses who care FOR and ABOUT people with MS. But, when folks suggest I am one in a million, I correct them that I am one in over 2,000 MS nurses (IOMSN) worldwide who specialize in MS nursing.”

After being an RN for 50 years, Dottie is a tireless warrior not only in Words with Friends but with every patient she meets. She’s helped me, and countless others, with her knowledge and compassionate heart. I will be forever grateful that she is also my friend.

Gretchen Mathewson: Specialty Coordinator, Nurse Practitioner of Neurology at The Mount Sinai Hospital, Corinne Dickinson Goldsmith Multiple Sclerosis Center, New York City.

I recently changed neurologists, which meant I also changed nurse practitioners. During a recent checkup I spent time with Gretchen, who not only gave me time to ask all of my questions, she also gave me advice unlike any other:

“Try to forget you’re disabled. Take up martial arts for balance, and go back to yoga. Live your life without thinking of yourself as disabled.”

That’s a hard task since I write about disability, but I’m trying to separate myself between Cathy the Writer and Cathy the Healthy Woman who happens to have MS.

Michelle Keating: MS Nurse Consultant, part-time oncology nurse, Mercy Hospital (St. Louis).

What’s special about Michelle? She also has MS. Anyone with MS knows that fatigue can be our number one enemy. But Michelle keeps moving by helping and caring for others. As she says:

“What I love about working with those with MS is the ability to educate. To encourage, create hope and provide support for patients, and finally to inspire them to live their own lives with a positive wellness approach.

NOTE: If you live in the St. Louis area, please check out Michelle’s upcoming fundraising event, MS Evening of Hope.

Claire Mayone is a nurse with Genzyme’s One to One Program. A veteran of the nursing world for over 25 years, Claire decided to dedicate her skills after her husband’s MS diagnosis. She now helps others navigate the many challenges of having an unpredictable disease.

Read more about Claire and the MS One to One program, a unique resource and program for people living with MS and their care partners. Members are provided with personal support and access to trained MS nurses over the phone or online. Visit www.MSOnetoOne.com or call 1-855-676-6326.

What positive stories do you have about nurses?

The Best Gifts Are Passed Down From One Generation To The Next

Someone asked me what was the best gift I ever received. I've been stumbling over my response to this question ever since.

I didn’t want to answer by saying something obvious, like a happy marriage (which I never take for granted) or something tangible like a beautiful piece of jewelry.

Then it hit me. Of course. It was right in front of me all the time.

The best gift I ever received might sound strange to you, but its the lessons I learned about myself, and from those around me, after being diagnosed with Multiple Sclerosis.

Being diagnosed with an incurable chronic illness is not only about the patient. It's also about those who love and care about you. The courage and love shown by family and friends while the sting of the diagnosis is fresh and raw is a true lesson.

And a gift.

My family showed courage the day of my diagnosis. My mother had the unenviable task of telling me about my diagnosis, something no mother should ever have to do. My brothers hugged me, and my father quietly kissed my forehead while gently stroking my hair.

My boyfriend held me close, and whispered he was with me for the long haul.

My three best friends cried and laughed with me as we listened to each other's words of wisdom.

This is how my journey began.

Over the years I’ve had friends drop off the radar. Because of their ignorance and inability to understand illness, I’ve been hurt, questioned and misunderstood. This served to strengthen me, and was the catalyst in my need to educate and spread awareness about MS and that, despite having a disability, my abilities are what define me.

The gifts I received of love and understanding are the ones I've tried to pass on.

When my son was born we decided to always be truthful with him, even about my illness. Mommy can’t run, Mommy gets tired, Mommy has good days and bad. We also wanted him to learn the importance of a positive attitude, tolerance and being compassionate.

When my MS Center was celebrating their 10^th anniversary my son was 3 years old. A popular local newscaster was attending their celebratory event, and my son and I were going as well. While the newscaster was speaking, I noticed my sweet little boy climbing up into the lap of one of our dear friends who was severely disabled and required a wheelchair.

I smiled when I noticed the joy on the man’s face. That tiny act from our big-hearted, innocent child stayed with me all these years later. I knew in my heart that we had, indeed, instilled in our son the best gifts I ever received: love, compassion and an understanding heart.

My "best gift" was being passed down from one generation to the next.

Tomorrow is #GivingTuesday. What Will You Do To Give Back To The World?

I got the email. The one in October from The Mission List asking me to join their efforts as Ambassador for #GivingTuesday. I never responded. As they say these days, "My bad."

I promised myself that after I turned 50, my Second Chapter would be dedicated to paying it forward to those in need.

#GivingTuesday fit perfectly into my plan.

My life was terribly busy when I received the notice from The Mission List, and their notice blended in with all of my other emails. I should have stopped whatever I was doing to read it, because I know that ANY email from The Mission List is an important one.

I may not be an Ambassador for The Mission List, per se, but I wholeheartedly believe in their mission of #GivingTuesday.

I give because I care about the people I love. I give because I want to make the world a better place. I give to, among others, Pancreatic Cancer Action Network, The American Cancer Society, The National Multiple Sclerosis Society, and our local police and firemen.

All I know is I want to give back, and spread that message, on the same day that thousands of others are giving back worldwide.

Tomorrow is THE day. Tuesday, December 3 - #GivingTuesday.

Tomorrow is a call to action to "celebrate giving and encouraging more, better and smarter giving during the Holiday Season. It's an organizing principle to encourage creativity and energy of people all over the world to work together for good."

Max, Newton, Whitey and Smokey are my reasons to give to stop animal abuse, and to help find warm and loving homes for all of our furry friends. My newest charity is where Heaven is being cared for after being brutally abused - NJ SPCA (www.njspca.org) They are doing G-d's work and are in need of donations.

For me, giving back has always been a very personal experience. The organizations I donate my time and effort to are organizations that have touched my life in some way. There are also organizations whose work and dedication for a cause has touched my heart.

Let's all put philanthropy back into the giving season. The whole idea is about ordinary people doing extraordinary things, one person at a time. United, we can make the world a better place. We can make a difference.

FYI: In case you are interested, this is how the idea of #GivingTuesday began:

New York's 92nd Street Y was the catalyst and incubator for Giving Tuesday, with the United Nations Foundation providing their stragetic and communications expertise.
A team of advisors, including Adam Hirsch (Edelman), Rob Reich (Stanford) Sharon Feder (Mashable advisor) and Mathew Bishop (The Economist) played a critical role in shaping GivingTuesday's strategy.
Facebook, Groupon, the Case Foundation, Variety, the William Morris Agency and Mashable brought together leaders in the social good world for a series of influencer meetings nationwide.

What will you do on #GivingTuesday? Leave a comment here, or spread the word through social media. Let's take a step forward by giving something wonderful to one another.

American Cancer Society (Photo credit: Wikipedia)

How I Won the ndy (Not Done Yet) Contest And What It Means To Me

A few weeks ago, I was introduced to an extraordinary person and company, Carol April and ndy through a giveaway.

The story of Carol and ndy touched my heart on many levels.

The mission of ndy and Carol intends to support women's dreams and to live agelessly while doing it.

The anticipation!

With my lengthy background of working for nonprofits and fundraising for different causes, I found Carol's support of The Noreen Fraser Cancer Research Foundation, Alzheimer’s research, and the Our House Grief Support Center in line with my desire to pay it forward to helping others.

So I was pleasantly surprised and thrilled when I learned I won the ndy giveaway!

I forgot all about the contest until one day; a box appeared on my doorstep. I was happily surprised to open it and find all of the beautifully packaged gifts from Carol.

Beautiful gifts, and so many!

The pin, post-it notes, notepad, travel mug, and two beautiful t-shirts displaying "Not Done Yet" and "Gen-Ageless" were welcome newcomers.

I will proudly display all of these beautiful gifts at every chance I get, hoping to spread the word:

"..whether you’re happily married or successfully single; healthy and strong or battling illness; struggling financially or set for life; running a marathon or holding down the sofa – where ever you are, remember:

I love my new shirt. It's so soft and says it all!

WE’RE ALL IN THIS TOGETHER and NOT DONE YET!!"

Thank you to Carol for her lovely gifts. You are extraordinary!

Multiple Sclerosis, The Heat of Summer, and Learning our Lingo

It's summer, which means backyard barbecues, spending time at the beach, listening to the sound of crickets, and carving out time for a well-deserved vacation. Time to relax, lounge, and get outdoors.

But not everyone welcomes summer. For people with multiple sclerosis, heat and humidity can be our enemy, causing many unwelcome symptoms. Yet carefully managed, we can spend time outdoors armed with cool packs, cold drinks, big hats, and large umbrellas.

The National Multiple Sclerosis Society estimates that over 2.5 people worldwide live with multiple sclerosis, a chronic, unpredictable disease of the central nervous system that incorrectly attacks a person's healthy tissue.

Many symptoms range from blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, blindness, and more. These problems may be permanent or may come and go.

We spend a lot of time explaining our symptoms to people unfamiliar with MS and don't understand the daily physical and emotional issues we live with.

Healthline created a "heart" filled with "MS lingo" listing multiple symptoms of Multiple Sclerosis. Take a look and educate yourself. Those of us with MS genuinely thank you for taking the time to educate yourself about our disease.

MS Lingo: A whole new vocabulary of MS words

Please click here to learn more: Healthline: MS Lingo and The Words You Should Know

Have a fun and COOL summer!

How "Invictus" Teaches Us To Learn From Life Lessons

Encinitas - San Diego

“Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.”

When I entered the room, several women were lying flat on the floor with their legs stretched along the mirror. Their arms were stretched behind them, balanced against the floor. I felt anxious.

After the class warmed up and we began our routine, the instructor told us to do a “Downward Facing Dog.” What the heck was that? I was clearly out of my element. Quietly, the instructor walked beside me and demonstrated the intended yoga pose. After whispering, “I can’t do that” into her ear, she gently showed me an alternate move that considered my physical limitations. I felt relieved.

Ten years later, I can do a proper “Downward Facing Dog” and stay in that pose with the rest of the class.

Baby steps forward.

Twenty-one years ago, I walked with a cane, the first time since my diagnosis of MS. My legs were weak, and I lost feeling in my right leg. I drove with hand controls because I was losing strength in both hands. But I took it all in stride; being young and naïve can sometimes be good.

Then I became pregnant. It was an immense joy in my life. Not only for obvious reasons but also for a very important one. The weakness and numbness I felt disappeared altogether. I got rid of the cane and hand controls - for good. Who knows why. Hormones? Whatever the reason, my perfect, beautiful little boy was my angel in more ways than one.

I’ve never needed hand controls again, and I credit my son, the development of new medications, and the Woman or Man upstairs for that.

Jordan and Mom and Grandma

“In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody but unbowed.”

When I turned 52, I decided to start a blog. I have always loved to write, and I also loved being a health advocate. The marriage of the two seemed perfect. So I educated myself about blogging and setting up and designing one (thank you, YouTube). But what would my “niche” be? I wanted to write about living in my “Second Chapter” and, as Anna Quindlen said, living out loud. I thought I was the only one with this unique angle. Surprise! I was wrong.

I met a group of intelligent, articulate, creative, and passionate over 50 bloggers. Yet, while they empower me, I am sometimes daunted by them. Many are published authors, columnists, professors, and speakers. While we learn from and support each other, I’ve sometimes felt small and in their shadow because of their achievements. Until I had an epiphany…

“Beyond this place of wrath and tears
Looms but the Horror of the Shade,
And yet the menace of the years
Finds and shall find me unafraid.”

I realized I’d learned much from my yoga practice, living with a chronic illness, and being a blogger. This is what I know is true for me, and perhaps it is for you, too:

We all move forward at our own pace in the world.
We are unique individuals with our values, abilities, and desires.
We, alone, are the masters of our own creation.
We should never compare ourselves to anyone else. Ever.
We should never feel bigger or smaller than the next guy.
We should accept ourselves for who we are and never allow others to belittle us.

These insights are now helping me take baby steps forward in my life. It only took 54 years for me to realize them! Every step and every challenge has been a life lesson, each one preparing me for what lies ahead. I will no longer remain in anyone’s shadow and will stand on firm ground as I create my journey.

What life lessons have you learned?

“It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.” ~William Ernest Henley, Invictus

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DISCLAIMER: Comments from An Empowered Spirit are brought to your attention on topics that could benefit you and should be discussed with your doctor or other medical professional. I am not medically trained, and my posts are journalistic and not instead of medical advice. An Empowered Spirit and its author will not be held liable for any damages incurred from using this blog or any data or links provided.

How you can help someone with MS or other chronic illnesses

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