Tag Archives: March MS Awareness Month

MS Awareness: Are We Shooting Ourselves in the Foot?

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March 29, 2022
5th week, MS Awareness Month

I let my hair down last night.  I posted a distressing message on social media.about MS Awareness Month.

I have just reached my 42nd year of living with MS, and I was in one of my distressing moods.

Throughout MS Awareness month, I guess I was irritated by the upbeat MS events, activities and stories I’ve been reading all month on numerous publications and MS platforms. I was tired of all the happy posts on social media, and wanted to express my real feelings at that time. It seems the same every year.

I get it that people with MS need lifted and this is an appropriate time to do just that. But why does it stop there?

Truth is, people need EDUCATED more about MS.  It sucks. It’s hard. And I’m tired of.  pretentious posts by people who glorify that that “MS” doesn’t define them. MSers are shown doing all kinds of wonderful things. “There are SO many treatments available now. Just pop a pill or get a shot.”  Inspiring, yet defeating. Are we shooting ourselves in the foot?

I want honestly. Realism.  Why aren’t there more innovative ways to help people UNDERSTAND the complications and implications of MS.  Display faces of distress and sadness instead of smiling ones. Why not show a list of things that cause financial impact–job loss; medications; bladder supplies;  equipment… Or of our losses–income. freedom, independence, social life, household limitations…

I was gratified that some online websites offered great MS education in March. MS Wellness Project has an excellent post about resources. The Rocky Mountain MS Center  has a free newsletter entitled “Painting the Picture of MS: How can we help the People Around Us Better Understand Multiple Sclerosis?”

There are one million people estimated in the U.S. (2.5 million worldwide) living with MS. However, when you count the people not living with it–friends, family, healthcare workers, employers, public service, strangers, etc.– the number dealing with MS is in the millions!  Helping everyone to understand MS helps those of us living with it.

Today is another day. It’s education time, one of my passions in life. If everyone dealing with MS educates just one stranger with MS, it’s an impact. There are strength in numbers.

Although MS Awareness Month is over, educating others about MS doesn’t have to be,

What do you think?

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

Living with MS is a B.I.T.C.H.

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March 8, 2022

There. I said it. I’m letting my hair down today. And I want to make everyone aware of it during this “March is MS Awareness Month”.

This post is easy to write, because I’m having a bad day.

Whether a diagnosed case of MS is mild, moderate, or advanced, living with it over time is

  • Baffling: by what is causing what; how long something will last; how bad will it                      get…
  • Interfering: with things I try to do, say, feel, think, see…
  • Thieving: of my job/finances, my time, my libido, self-esteem, dignity, abilities…
  • Controlling: of my decisions, my activities, my social life, my emotions
  • Humiliating: as I stumble, sway, lose control of my bladder/bowels, get                                        confused…

While there still is not a cure, I’m still hanging onto hope. Tomorrow is another day. Another chance that it will be an easier day.

P.S. I’m wearing my orange ribbon next to the blue/yellow ribbon (for Ukraine). It raises awareness, and questions.

 

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

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March is MS Awareness Month

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March 1, 2022

GET INVOLVED!!

Do you have multiple sclerosis? Someone you know have MS? Involved with MS associations? Have MS patients in your profession?. YOU are needed to spread the word this month.

Too many people are still unaware of what life with MS is about. That’s because those of us living with it:

  • Have “invisible” symptoms, like fatigue, muscle weakness, impaired vision, neuropathy, cognitive difficulties…
  • Don’t frequently talk or complain about it for variety of reasons e.g., employment concerns, fear of upsetting family members…
  • Find it difficult to explain to others.

Once again, it’s important to take the opportunity to collectively increase MS awareness and understanding of it.

How?

  1. Read my MS Blog article that includes a quick summary of “What is MS” and pass it out.  https://blog.debbiems.com/?p=113
  2. Orange is the color that stands for MS. You can simply wear an orange ribbon every day on your lapel/shirt, in your hair, on your purse…or you can tie an orange ribbon on your car or put one on your house!
  3. Want to do more? Organize something as a team for an MS event coming up. Watch this fun video to see what we did at the Arizona Chapter of the National MS Society some years ago http://bit.ly/YJxleg .

You can start today just by sharing this post!

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

March is MS Awareness/Education Month

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“Get Involved”

March 4, 2013

YOU are needed to get involved if: you have Multiple Sclerosis, someone you know has MS, are involved with MS associations, or have MS patients in your profession.

Why? Watch this video about my orange ribbon campaign http://bit.ly/YPI1Kq

How? It’s very simple. Read my MS Blog article that includes a quick summary of “What is MS” https://blog.debbiems.com/?p=113 

Orange is the color that stands for MS. You can simply wear an orange ribbon every day on your lapel/shirt, in your hair, on your purse…….or you can tie an orange ribbon on your car or put one on your house!

Want to do more? Organize something as a team. Watch this fun video to see what we did at the Arizona Chapter of the National MS Society http://bit.ly/YJxleg  .

Please start today!

www.DebbieMS.com