Category Archives: Multiple Scerosis

Awareness, Multiple Scerosis

Saturday Afternoon Reading”When The Music Stopped” by Author Bob Cafaro

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When The Music Stopped by Bob Cafaro

This is March! MS Awareness Month! I hear the wind whirling after the snowy day we had yesterday. I am home, I am staying in, I am reading, and I am giving a shout out to Bob Cafaro this afternoon.

Bob is a gentleman, who became a good friend through facebook. Got to love FB! Bob is a cellist in the world-renowned Philadelphia Orchestra. His book, “When The Music Stopped“! Bob conveys the strength and inspiration for creating our own miracles, and it could be with regard to illness, finance, or a relationship. In his book, Bob chronicles how he’s delivered his best personal medical performance, his Battle and Victory against MS.

Bob has given a Tedx Talk, and his second will be available soon. I am grateful Bob chose to become my friend, and a member of the facebook group, Living Mindfully with MS, CHronic Conditions, and Caregiving. He is always contributing, sharing information, and adding value to our community.

Whether your choice in medical care has been more conventional treatment, or a holistic approach, or a combination, I highly recommend reading Bob Cafaro’s book, which is available through his website, www.bobcafaro.com .

Enjoy the weekend folks!

Art, Health Advocacy, Multiple Scerosis, Narrative Writing, Poetic Medicine

14-Day Blogging Challenge: Day 4

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14-Day Blogging Challenge: Day 4

“One Thing About Myself”

What is voice?   Cambridge Dictionary Online expresses the English definition of voice is the sounds that are made when people speak or sing .  Voice can be [the right to] an expression of opinion.  Voice can be an important quality or opinion that someone expressed, or the person who is able to express it.  To voice is to say what you think about a particular subject.

One thing about myself, I hear a voice from within, saying, “Let me out” and I’ve been discovering ways creatively to do just that.  When I was a youngster, around the age that children are, when exploring and learning to speak on telephones, I, and probably like many others, would want to answer the phone.  My parents didn’t have a problem with my answering the phone; however, once when having received a call, the person who called had a problem with my having answered the phone.  A statement was made that “children should be seen and not heard”.  I have often thought of that voice and statement, especially when I’ve refrained from expressing myself.

I would describe myself as having a tendancy toward being introverted.  I found the definition expressed on URban Dictionary interesting to read.  I do tend to be found at home.  I’ve often spent time in libraries and quite places.  I do like to think, and at times, when I’ll say that I’m thinking, my husband will sometimes then say, “Oh boy we’re in for trouble.” I also enjoy spending time by myself.

Furthermore, I delight in socializing and I love talking to my family and friends. In addition, I love communicating and socializing through social media.  So, maybe, I’m not so introverted after all.

While I worked in corporate settings, as a bookkeeper and accounting manager, I mostly worked independently.  I have since discovered, and am grateful, that no longer working in a corporate setting, I have the opportunities to “Let my voice be heard” through my writing and the arts in which I am passionately engaged.

What is one thing you’ll share about yourself?

Cancer, Health Advocacy, Multiple Scerosis, Narrative Writing

April Snowdrops

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20150326_180208_1In the activities of the day, I might have drifted to a place –

Oh – how – wonderful,

Spring you have arrived,

Seems more nearly than in actuality,

Still a white blanket covers earth,

When the air is crisp,

And smells fresh and clear,

April snowdrops peeking through,

Awakening to this new spring season,

of a nose taking in the fragrant

flowers, and freshly mowed grass.

Endometrial Cancer, Health Advocacy, Multiple Scerosis

After Surgery as a New Endometrial (Uterine) Cancer Survivor

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I am one week out from surgery and feeling great.  This doesn’t mean that I’m going out dancing or doing acrobatics, lol, it means I feel as though I’m having a good recovery and I feel blessed. That fist night after surgery surely is the hardest. The pain is so grueling, the details need not be described, any post surgical patient knows what I’m talking about. I’d had surgery before, as an in-patient, fifty years earlier, and I knew I would tough this first night out,  this body having grown and weathered many seasons.  After I woke up from surgery, I remember seeing Norman (my husband) and a good lifelong family friend of ours who was keeping him company.  I remember speaking with my sister and another good lifelong family friend of ours who was staying with Francine and caring for her.  My husband stayed through the evening to see to it that I was comfortable and that I had what I needed, which was mostly apple juice and water.  I was heavily medicated.  I sent him home to get some rest.  How does one find a comfortable position during that first night, so many things have changed, a mattress that keeps pumping and changing position, and leg pumps to help with circulation. My left and right legs feeling so different from the Multiple Sclerosis, and this heightened sensation of numbness and heaviness in my right leg with the changing pressure of the pumping.  Nurses taking the time to find what would work, and using pillows, and rolling blankets, bringing extra pillows and blankets, to cushion  around my body, head and neck, stomach, waist, back, hips, legs, to help me lean into my side and give me cushioned support, comforting me after the Hysterectomy and with my symptoms from MS. There truly is something very special about those in whose care we are during that time. I am so grateful for the comfort brought to me during all those hours.

Multiple Scerosis

World Multiple Sclerosis (MS) Day 2014 – One Day I Wish For A Cure

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We’re not quite into the summertime heat here in New York.  These past couple days have been a reminder of what’s yet to come.

Summertime brings thoughts and pleasant memories of travels and visits with family and friends, vacationing, beaches, pools, outdoor concerts, automobile races, ballgames, volleyball, walking, even a bit of hiking.  During the summer season now, the thought of heat, and Heat Sensitivity being one of the MS symptoms I experience, summertime, along with its many pleasantries, for me is also a season of even greater MS Challenges.

Daily activities become affected, sometimes symptoms change, affected differently in each season, and in differing climates worldwide.  Summertime for me the most challenging, I can’t help but wonder how friends with MS worldwide are affected.

The following are some things I do to beat the heat.  I have my ceiling fans circulating and cooling the air.  Individual room air conditioners are an option at our home for me.  I make sure to keep ice packs in the freezer.  They’re great for cooling my core, back, neck, and head… and YES, I remember the recommendations for applying ice for only 20 minutes on.

To stay hydrated I drink plenty of water, and keep ice on hand too.  I often let ice cubes or crushed ice, melt in my mouth, it’s very refreshing and helps in cooling.

Yesterday afternoon I took a cool shower.  Showering and washing my hair just before leaving the house helps me feel a bit cooler before getting out into the heat.

There are companies that offer cooling vests and accessories and if these are of interest, then you might also want to check for additional information by contacting your local chapter of The National Multiple Sclerosis Society or the nearest MS World Organization.

In going places and doing things, there are different types of access issues faced by individuals with MS, around the world, everything from access to treatments and services to mobility and leisure.

Current medication and treatments, where available, have been developed and manufactured in a number of countries.  Copaxone is the medication I take.  Teva Pharmaceuticals is the developer and manufacturer of Copaxone.  Teva Pharmaceuticals is in Israel.

A cure can come from any country or countries working together.   I Believe A Cure is Possible through Research and Collaboration Worldwide.

One Day I Wish For A Cure.

What part of the world do you live in?  What do you do to beat the heat?

Multiple Scerosis

MS Impacts Us All

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Multiple Sclerosis (MS) is a autoimmune disease which typically affects movement, sensation, and bodily functions.

MS is caused by the destruction of the myelin insulation covering nerve fibers (neurons)  in the central nervous system.  I think of our nervous systems in like to an electrical system. When there is distruction of the sheath around a wire, the wire’s insulation is destroyed. When the wire’s insulation is destoyed, the wire frays, heats up, and can cause a fire.

One of the MS symptoms I personally experience is heat sensitivity. MS symptoms can become exacerbated (worsened) from heat.

The below link is to a video explaining how MS Impacts us all…

MS Impacts Us All