Five Pieces of Information I Found in My Search for a Better Life with MS

Sometimes when I’m busy working on an article or doing research for my personal use I come across a piece of news, an interesting tidbit or a website or blog I think deserves extra attention. I want to share what I found with my readers but I’m not quite sure how to present the information in a cohesive way. The list isn’t linear, they’re a conglomeration of facts and ideas that are interesting and worth noting. Read on to see what I found.

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Hope Beyond Illness  -  A Guide to Living Well with a Chronic Condition by Shulamit Lando is a gripping memoir. Shulamit Lando recounts her experience with Multiple Sclerosis, MS, a serious, debilitating, and allegedly incurable disease. She describes how she refused to let conventional medicine dictate its depressing message to her and how she used her body and her mind as a healing laboratory to combat the illness. After every chapter, valuable tips give you the most effective tools from different therapeutic approaches. Through her guidance and experience, you learn many ways to deal with overwhelming feelings and be able to allow calm and healing into your life. (Taken from Amazon.com)
NOTE: The views of this author are not necessarily the views of AES. 

Shift.ms is an informative, independent and supportive social network that was founded by people living with MS for people with MS. They help thousands of people around the globe. Recently Shift.ms began offering MS Reporters, videos of citizen journalists who are trained and matched with experts and influencers to conduct interviews of special interest to the MS community.

I am enamored with Shift.ms, and thought their MS Reporter Aoife did a fine job interviewing Professor Helmut Butzkueven, Joint Director of the MS Service at The Royal Melbourne Hospital and Director of the MS Service at Box Hill Hospital, Melbourne, Australia on how people with MS can more effectively communicate their needs to their neurologist. This is a topic that comes up quite often so I thought I’d offer this interview here.

 Do you have a question you'd like answered by an MS Expert? Click here.  

Bladder issues? It can be quite difficult living with urinary urgency, but discussing it? Yikes! Peeing here, peeing there, accidentally peeing everywhere is embarrassing, mortifying, humiliating, take your pick.  

Here are the pearly words of Dave Bexfield as he lays out a few rules he lives by when it comes to urinary urgency. Using his usual good sense of humor this video will entice you to check out his blog, ActiveMSers: Staying active with multiple sclerosis.

 

The Dream Team of neurologists at a Q&A answering our questions! Here’s an interesting roundtable discussion, Compass to Care, an educational seminar produced by MS Views and News. Moderated by MSVN founder Stuart Schlossman, this roundtable was a Q&A with three highly-respected neurologists, Dr. Daniel Kantor, Dr. Aaron L. Boster and Dr. Samuel F. Hunter. They answered such questions as:

MS Views and News - I’ve known Stu Schlossman, founder of MSVN, for a long time and I've watched him work tirelessly to create his educational platform that’s helped many MS patients and their loved ones in a variety of ways. I highly recommend taking a look at what MSVN has to offer :

MS Views and News Programming

The mission of MS Views and News is to provide education, advocacy, and services which empower and enhance the quality of life for the MS community. We have been able to measure the effectiveness of our programs through thousands of program evaluations and communicative emails and feedback from people living with MS and care partners stating that our programs have directly impacted them in positive ways.

MS Views and News receives financial support through charitable donations which support ongoing programming and services:

Live MS Educational Programming: MS Views and News provides free live educational events ( averaging 42 yearly) open to the MS community nationwide. These empowering educational programs bring multidisciplinary MS care providers together in one setting to bring our audience up to date and needed information about living strong and informed with MS.

eNewsletter: The MS Views and News Newsletter- "MS in the News" is received by over 25,000 readers monthly and provides comprehensive up to date information keeping our audience informed and engaged. A current view of this e-Newsletter is found here.

Online Learning: Live online webinars serving over 300 individuals impacted by MS monthly. Our live interactive online webinars allow the MS community to learn, share and interact with MS professionals from the comfort of their home.

The MS Views and News YouTube Learning Channel: With over 180,000 views to date MS Views and News continues to professionally video record the live educational events. This archive of educational topics provides our audience with an A-Z of living with MS. From symptoms management, pediatric MS and family life to the newest breakthroughs in research and medications, the Learning Channel brings it to our worldwide audience. 

Social Media community:  Through Facebook, Twitter and Instagram MS Views and News serves as a vibrant hub engaging the MS community. Together thousands receive daily uplifting posts and updates in the MS world.

To support the work of MS Views and News, please click here.

You may also want to read:
Feeling Invisible Doesn't Have to be a Lifelong Battle
The Female Painter Who Faces Life's Challenges Through Her Art

That’s it for now! I’ll be back again with more tidbits for you. In the meantime please let me know what you think about what I’ve offered here - I’d really like to know! Have a great, empowering day.

Why Community Is Important In The Midst Of Sadness

Women of my generation were not always taught as young girls to be self-reliant but were instructed to do well in school, build a community of friends and marry well. We learned early on that boys were groomed for careers while girls were groomed to sew, cook and look nice.

community women

The tides slowly changed after the second wave of feminism. Popular culture reflected these changes with television shows like The Mary Tyler Moore Show, Alice and One Day at a Time where the protagonists were self-reliant women, albeit arriving there under different circumstances. They were smart, savvy ladies.

Several years ago I recall chatting with other stay-at-home moms at a book club meeting. My decision to stay home to raise our son is one I’ll never regret. During our discussion one mom, an attorney with two children who worked part time, said something I’ll never forget. She attended law school because of her grandmother’s advice: Women should work to earn their own income, depositing part of their paycheck into a bank account of their own. No woman should be fully dependent on anyone.

As much as I wanted to be self-reliant my career choices were never breadwinners. Yet raising a child and all that the “job” entailed created a fifty-fifty proposition in our home. My husband and I always saw each other as providers on an equal playing field. That is part of what makes our marriage a strong one.

“Heroes didn't leap tall buildings or stop bullets with an outstretched hand; they didn't wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else's. And maybe that one act could lead someone to rescue you right back.” ~ Jodi Picoult, Second Glance

I also believe in the value of community, a term that morphed from like-minded people living in the same community to people finding one another on social media.

If we were all completely self-reliant there wouldn’t be a need for community, and Facebook, Twitter and Pinterest would have never survived. We wouldn’t be interested in helping, supporting and lifting each other up. A great society needs to have a strong sense of community in order to survive.

Growing up I loved having a lot of friends. During teenage angst and changing hormones my heart would sometimes get broken. Yet I always picked myself up and moved on.

“When you come out of the storm you won’t be the same person that walked in. That’s what the storm is all about.” ~Haruki Murakami

It’s in that heartache where important lessons are learned.

A true friend will laugh and cry with you. They’ll support you in your choices and tell you when you’re wrong. They’ll love you in your darkest and brightest moments.

And you will shine a light their way as well.  

In midlife the definition of community changes. The revised definition applies to the rules of blogging as well if we want our blogs to be well-received. We seek love, support, guidance, a friendly ear, a shoulder to cry on, an honest opinion and mutual respect.

In a week filled with sadness from the passing of two giants who left us too soon I thought a lot about being self-reliant and creating community. We can't be completely self-reliant because we all need to be part of a community, no matter what size, shape or form.

David Bowie and Alan Rickman relied on their great gifts to create the communities who mourn for them. They will forever remain in our hearts.

How are you building your community?

♥♥♥♥♥♥

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Five Words To Inspire You To Live Your Best Year Yet

As last year drew to a close I heard a lot of buzz about Elizabeth Gilbert's Happiness Jars, an idea she created for herself years ago and is now passing on to inspire us. This magical jar creates self-awareness about even the tiniest blessings in our lives.

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I promised to start my own jar in the new year. Getting into the habit of writing down something to be grateful about every day would force me to find the smallest bit of good that happened on a bad day and the best thing that occurred on a good one.

In my 56 years on this planet I’ve learned one important lesson about myself: I never follow resolutions. Look into my knitting bag(s) and you’ll gasp at the number of unfinished scarves, hats and blankets I promised to bind off at the beginning of several new years. Or step into my library to see the number of books stuffed into our bookshelves, ones I said I’d box and donate every year. These include recipe books that I promised to use after promising to start cooking again.

In a prior post I wrote about my new Choices Notebook Planner and how I’d be using it to set goals for 2016. Many of my goals focus on my work as a writer, but others address taking better care of myself - physically, emotionally and spiritually.

As I round the corner toward 60 and my disability taunts me a little more each day I decided that it’s finally time for ME.

Does that sound self-centered? Perhaps, but I think in order to live a quality life we need to sometimes be self-centered. If we don’t put ourselves first who will? Work can wait and our loves ones can too. What we need to do is tend to ourselves.

At the end of last year there was also a lot of chatter about choosing a single word to help you focus on your goals in the coming year. Pick one word to keep in your mind’s eye and it will be your guide.

Happy. Achieve. Listen. Balance. Commitment. Strong. These were all popular choices. I tried to think about what my word would be. One word. One word. One word. I couldn’t decide on only one. I became frustrated and tucked the idea away.

Until the other day. At first I couldn’t understand why I suddenly started thinking about choosing a word and finding a glass jar again. Something unlocked that door. What was it?

That day was filled with boring errands, like going to the DMV while the digital thermometer on my car’s dashboard read a single digit: 9. I’d rather be under the covers sipping hot chocolate with flannel pajamas and two pair of socks on.

Then it dawned on me. Despite running around and feeling anxious that I wasn’t getting any work done I was spending time alone with my husband. It might not be the romantic, quality time a woman dreams of, but in my heart I knew that doing mundane chores together made me happier than doing them alone.

We both work from home and honor each other’s space. From 9 to 5 we're in business mode unless we take a break to walk around the block together.

After finishing our errands we rewarded ourselves with a casual lunch at a local diner. Sitting together, having someone else cook our meal and wait on us felt divine. We chatted, laughed and talked about the coming year. After being together for 30 years it still fills my heart to spend time alone with my husband. It doesn’t get any better than that.

I tore off a piece of paper and wrote down my first words to fill my new Happiness Jar: Lunch out with my husband and feeling very loved.

Now that I began my Happiness Jar I wanted to find my one word. I thought and thought and decided I needed something more. I wanted to redefine a group of words that were failed resolutions of the past, ones that take on new meaning at this point in my life. You can tweak them to suit your own story:

Diet: It’s time to slim down by removing toxic-thinking people from my life, shed negative thoughts and replace them with positive ones, and choose healthy social and work-related relationships.

Exercise: I vow to exercise my mind by reading the pile of books on top of and in my night table. I will stretch my brain by learning new skills, and incorporate healing therapies to achieve inner and outer balance.

Faith: I will trust that things happen for a reason and that I am in the exact place I am supposed to be. I will trust that I am doing the best I can within my abilities and have faith that my best will always be good enough.

Courage: I will look at myself in the mirror and not focus on wrinkles, extra pounds and untamed hair but instead will see a mature woman using her adversities as a way of helping others as best as she can. I will have the courage to admit there is great beauty in that.

Relax: I will unclench my jaw and learn to breathe. I will live more in the moment to fully enjoy my life. I will spend time listening, loving and learning from others, relaxed in the knowledge that doing this is where the magic begins. I will not take anything for granted. Today is the best day we have. And tomorrow will be as well. And the next day.

Each day is a gift that we are each blessed with. I hope your days will be blessed with inner peace, great joy and good health.

♥♥♥♥♥♥

If you've enjoyed my writing I hope you'll take a moment to vote for AN EMPOWERED SPIRIT as Best Health Blog of 2015. Click here and scroll to LOAD MORE until you reach An Empowered Spirit. You can vote once a day through January 21 using BOTH your Facebook and Twitter accounts. Thank you for your support of the work I do. It is deeply appreciated.

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http://www.elizabethgilbert.com/lets-talk-about-those-happiness-jars-shall-we-de

The Most Important Lessons I Learned From My Son

Two years ago tomorrow I published my most popular blog post to date. I wrote it to honor the occasion of my son's 21st birthday, a time for both reflection and celebration for my husband and me. Since his birthday falls on the same day as another New Jersey native occupying my heart, one who would have turned 100 tomorrow, I thought I'd re-publish it a day early. 

son teaching inspiration

Life Lessons on the Occasion of my Son's 21st Birthday: Our Journeys Are Unique to Each of Us

Once upon a time there was a little girl who wanted to grow up and have a family of her own. She dreamed of meeting a knight in shining armor that would sweep her off her feet and take her away to live happily ever after.

S-c-r-a-t-c-h.

Once upon a time there was a little girl who loved to read. She loved reading about strong-minded, resolute women making headlines, like Gloria Steinem and Bella Abzug. She thought it’d be cool to someday burn her training bra. But she was too young and naïve at the time, so she continued to dream about her knight in shining armor and having a family. Would the knight be willing to do housework?

C-r-o-s-s-o-u-t.

Once upon a time there was a little girl who wanted to live a long and happy life. She dreamed of someday marrying her Prince Charming and, together, they’d have a happy and healthy child. She loved to write, and always enjoyed helping others in need. She knew she wanted to find a perfect balance between her family life and a life filled with passion.

Bingo.

But, alas, not all little girls’ dreams come true. Life simply doesn’t work that way. As John Lennon famously wrote, “Life is what happens when you’re busy making other plans.”

These were my life lessons:

But life has a mind of its own, and sometimes we learn harsh yet valuable lessons. John Lennon was right. What we envision for ourselves and what life hands us are two different things.

When I finally became blissfully pregnant for a third time, it was the charm. Two weeks shy of nine months, I gave birth to a beautiful, healthy little boy.

son teaching inspiration

My son has been a blessing to me every day of his life.

The life I envisioned so long ago was finally unfolding.

Today is my son’s 21st birthday and he is the reason I’m writing this post. I want him to understand that no matter what I learned in my childhood – the joys, frustrations, loves and heartaches - mine is a different road than the one he is traveling.

He has his own journey.

I want him to know he has taught me more than anyone or anything ever will.

He’s taught me, through his genteel manner and a heart filled with compassion, about patience, understanding and inner strength.

And he’s given me more unconditional love than I ever imagined.

son teaching inspiration

Twenty-one years ago my father’s gift to my son was a case of fine port with instructions for the first bottle to be opened on his 21st birthday. In the next week I look forward to being with my parents to open the first beautiful bottle together and toast to my son's happiness on his big day.

May he always be surrounded with unconditional love. May he find his own brand of happiness, with a life filled with purpose and compassion, according to his own desires and principles, and on his own terms.

As my beloved Uncle Henry always said to me, "I hug you with my words."

Happy 21st birthday, my dear, sweet son. I love you forever.

son teaching inspiration

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