The Power of a Smile

Don’t just smile for photos. The few seconds it takes to smile—anytime and often–has tremendous value and it’s free.

My favorite columnist, Harvey Mackay, reminded me that it’s National Smile Week, held annually during the second week of August.

 

Did you know these facts about smiling?

  • A smile improves your looks and takes years off your appearance.
  • Smiling makes you more approachable, increases your attractiveness, makes you appear more intelligent and improves relationships. Smiling conveys a message of happiness, approachability, and confidence. (These are things managers typically look for in employees.)
  • Health benefits from smiling are enormous, Research has shown that a smile is a natural antidepressant; it reduces stress/anxiety and elevates moods. Smiles can help the immune system, lower blood pressure, and even serve as a pain reliever.
  • Because smiling has the power to reduce stress, it increases your ability to deal with trying situations.  Why? Smiling boosts endorphin output and forces us to breathe deeper, resulting in a calmer outlook and increased coping ability.
  • Smiling encourages positive thinking. When dealing with a negative situation, a candid smile inspires positivity.
  • If you’re having a bad day, force yourself to smile. Research suggests that the act of smiling can actually trick the brain into feeling happier, no matter how bad the current situation may be.
  • Smiling is contagious. Just think — you can help another improve their well-being by giving them a chance to smile back! Happy people influence the people closest to them and provide a boost of good energy. So, next time you’re feeling down, seek out your happiest friend and let the smiles begin.
  • No matter where you are in the world, smiling is recognized as a universal display of happiness and good nature.

In my book Managing MS, here’s one of the tips I share for how to deal with people when you have MS:

“Smiles and kindness go a long way–

Even if you feel crabby, fake a smile anyway. We need people and most of us like to interact with people. I’m almost always nice and smiling at people. When I ask for help, which in my case I have to ask for help a lot, I get what I need with a smile back. If I’m in a grocery store and can’t reach an item, I’ll nicely ask “When you have a moment, would you reach something for me?” I always get help, usually followed by the offer to let them know if I need anything else.

When I was in the hospital last year, even though I felt miserable I always was kind and patient with the nurses. The nurses would actually give me extra attention, because they would remark how cranky everyone else was. They would sometimes hang out for a few minutes to yak, which actually elevated my moods. It’s hard to do when you yourself are feeling so miserable, but the positive responses back are worth it.”

Don’t you think that if people smiled more, it would help make the world a kinder and happier place? While smiling certainly doesn’t fix all problems, it certainly has the power to make us feel just a little better at any given moment.

Debbie Petrina                                       
Author of Managing MS   
Moderator, MultipleSclerosis.net 

 

The Age of Overkill

Overkill: “An excess of something (such as a quantity or an action) beyond what is required or suitable for a particular purpose.”

Life was simple in the 1950’s. Throughout my long life, I’ve witnessed the evolution of product choices, variety, and quantity. Vehicles, foods, gadgets, electronics, medicine… On the one hand, it’s wonderful to have so many things to choose from. On the other hand, more isn’t necessarily better.

Overkill is stressful; it takes a lot of time and energy to figure out what/where/how to buy something and which is the best value.  The learning curve is constant with new updates and inventions to try or buy. Overkill can easily lead to over-spending, over-shopping, over-eating, over-doing, over-treating…Overkill can even kill.

Especially in the medical field. Our medicine cabinet in the 1950’s contained aspirin, Pepto-Bismol, Caladryl, bandaids, a bottle of hydrogen peroxide and a thermometer. We had annual checkups with our GP and eye doctors at their home offices; emergencies in between were handled by a single call and a same-day visit.

Today, the quantity and types of doctors, specialists, tests, medications/treatments are amazing. Obviously, having what is available in medicine is tremendous for our health and wellness needs. The downside, however, is that the excess of so many options with doctors, treatments and healthcare specialties has created complicated health management. And legal ramifications (another topic, another time.)

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Who takes care of coordinating our previous/current day status of doctors and medications?  Many people assume that current-day technology does this. Others assume their PCP does this. During a visit with my PCP yesterday, my list of meds was not updated since our visit six months ago. Only one of the four specialists I had seen sent him an update of that visit. It was no surprise to either one of us. Dr. S. added that it’s a now a common problem, and it’s being exacerbated by the increasing number of specialists.

Age brings wisdom. Having lived for 67 years, (42 of them w/ MS), gave me quite an education with doctors and medicine.  My own health team grew to include many PCPs, 8+ MD Specialists, P/T & O/T to help just about every part of my body. I can’t count how many times or days I spent in hospitals for myself or other family members.

Who keeps track of my medical management? I do, because the  constant change of all variables over time can’t possibly be coordinated by anyone else. If anyone believes that their PCP, insurance, computers, etc. does this, they are mistaken.

I have always kept a journal and made sure every drug, doctor, pharmacist was up-to-date and connected with my current health status. For every new visit and prescription.  It’s my responsibility, even if a screw-up happens in our health system (that does a great job of covering their butts).

Another consideration: who do you trust as a backup for your medical management if you get in a situation that you can’t do it on your own?

In a recent blog article, I told the story of my mother.  Poor medical management almost killed her. Assisting my stepdad with her care management since January revealed many previous mishaps. During the past couple of years, she had been overmedicated and prescribed several wrong medications. Doctors (i.e., PCP, neurologist, GI specialist….) were not coordinated with her meds and updates; follow-up visits with the team of doctors did not occur. Stepdad is her health care manager; but in some cases, two heads are better than one.

It’s complicated to live nowadays. It’s complicated when sickness befalls us. It’s complicated when we grow old. It’s complicated to die. Crap happens when you least expect it, whether it’s you, your partner, your parents……..

Medicine is complicated. I don’t trust anyone but myself with my medical management. I read every word in every document before I sign it. My husband is my backup.

What about you?

 

Debbie Petrina
Author of Managing MS 
       Kindle Unlimited
Moderator, MultipleSclerosis.net 

 

Honoring Mothers Living with MS

Motherhood.

        It requires strength, patience, tolerance, common sense, devotion, and countless other skills and virtues. It’s hard, demanding, never ending. It is the hardest job in the world.

Living with MS

    It requires strength, patience, tolerance, common sense, perseverance, and countless other skills and virtues. It’s hard, demanding, never ending.  It makes the hardest job in the world extra hard.

I know because I am a mother living with MS. Unconditional love despite the challenges. it’s good to focus on how it’s built our character, and how that character is transformed.

I honor all mothers this Mother’s Day, especially those living with MS! 😀

 

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

www.DebbieMS.com

 

Personal and Private Meetings

Is something hidden in your closet? Or do you need help decluttering it?

Everyone keeps things hidden in the back of their closet; I used to, but not anymore. If you were seeing a therapist/psychiatrist, would you tell? Or are you someone who thinks you don’t need one or can work things out on your own?

I am an open person with an open mind, mouth, ears. and eyes.  This is how I learn.  I’m also an open book and incredibly honest.  I’ve been this way for as long as I can remember. If you have read my new release Managing MS, you found this out because of many personal stories shared, especially about some taboo subjects.

People learn from other people. My long life of 67 years (42 w/ MS) has given me constant reason to expose some of my private self.  By doing so, I can bring awareness and help to others even if it’s in the smallest way.

This week I had my three-month appointment with my psychiatrist. Because of current laws, this is required for me in order to get a prescription for sleeping pills. Initially. I was annoyed that I had to add a regular psychiatrist appointment to my already busy schedule for the sole purpose of pills. But I’ve come to look forward to these appointments for a variety of reasons.  She’s an anonymous, unbiased person who listens to me, talks with me, and stands by if I need a lifeline.

I’m a great listener; I’ve been told many times from many people over many years from those who talked with me in confidence. But there are times when Debbie needs a Debbie. I don’t like feeling alone about some things.

In the past, I’ve had short periods of behavioral therapy to work through some major problems life threw at me. Family deaths, an MS dx, disability and job loss to name a few. I learned coping tools from these therapies, through lifelong support groups and other instruction like Dialectical Behavior Therapy (DBT). What these regular appointments do is keep me on track with my own behavior. Sort of like how a regular performance review or staff meeting keeps you on track with your job.

My life lately has been chaotic, overwhelming, and stressful.  Knowing that this appointment was coming up this week steered me to hunker down and put my honest thoughts on paper. What’s my status, and what could I do? I wasn’t handling relationships well; I was oversensitive; I was angry that too many things in daily life were so difficult to do…  The world is changing so fast, I can’t keep up, and I felt like I was in quicksand. My cluttered closet needed organized.

I felt prepared when the appointment began and shared my situation. No, I wasn’t depressed; I had high anxiety and for me, there is a difference. No, I don’t want anything for my anxiety; it’s my own fault and I can fix that.  I had taken my DBT manual off the shelf to review. Yes–“Use more Teflon–Don’t let things stick.” “Let go of toxic people and things.”  “Set boundaries and say ‘no’.”  “Don’t ‘should’ yourself or others.” “Change what you can and accept what you can’t.”

Yes—accept that I AM older and have an advanced chronic illness.  A good friend recently said I was Wonder Woman, but that has backfired on me because I had set the bar too high for my own and others’ expectations of me.  Yes—don’t cheat yourself from retirement. Yes– watch inspirational documentaries and reading novels every afternoon while lying down to declutter the busy brain.

I can’t change the world, others, or my age; however, I can change how I deal with it. Personal, private meetings have value when you are comfortable with the person facing you. Validation and sincere feedback are important especially when it is unbiased and anonymous.

Airing out my closet and organizing it from time to time lessens my internal stress and recharges my batteries.

So, how is your closet?

 

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

www.DebbieMS.com

 

 

 

March is National Reading Month

March 21, 2022                                         

March is MS Awareness Month, but it is also National Reading Month. It was designated in honor of Dr. Seuss’ birthday to motivate everyone to read every day.

I learned this from reading Harvey MacKay’s weekly motivational column. He states that reading is key to education while fostering confidence and inspiration. Reading also has immediate and long-term health benefits, such as increased memory/cognitive function, empathy, and decreased levels of stress.

When you open a book, there’s always something to learn. I always think that if I learn just one thing that I can use the rest of my life, it is worth the cost. I have been an avid reader all my life, and wonder if that is the main reason that I don’t suffer from cognitive issues that affect over 50% of people living with MS.

Social media and online platforms are popular, easy go-to places to read about MS. But the mounds of information can be overwhelming, especially for people in the undiagnosed or newly-diagnosed stages. There’s something comforting about a good book sitting on a bookshelf for reference, especially if it is both educational and inspirational.

I have observed that conventional books about MS are not actively sought. Why not? One misconception is that because the world of MS is constantly changing, books about it would be obsolete the day they become published. However, anyone who would pick up an MS book would find that much content is extremely useful and not outdated.

Another misconception is that MS books that aren’t written by MD’s are not credible. But, there are great books written by people who have lived with MS for years who are valuable mentors for both medical and non-medical subjects.

I often look at it this way: I can choose between spending $20 for a lunch that’s over in an hour or so, or I can spend it on a book that lasts much longer. Either way, there is a wellness benefit.

Awareness of MS and reading books about MS are not mutually exclusive. Why not check one out today?

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

www.DebbieMS.com

 

 

How to Calm Anxiety (When You’re Freaking Out)

While not specific to MS, the following website is filled with so many things to help with anxiety.

PLUS, SO MUCH MORE, for anything under the umbrella of well-being..

https://www.fingerprintforsuccess.com/blog/how-to-calm-anxiety/

Fingerprint for Success is a professional & personal development platform for individuals & teams to make amazing things happen in life and at work.

Be sure to check it out and share!

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

www.DebbieMS.com

 

March is MS Awareness Month: Education!

March 2018

I let my hair down last night.  I posted a negative, distressing message on FB.

I have just reached my 42nd year of living with MS, and I was in one of my distressing moods.  Don’t we all have them, MS or not?

This is MS Awareness month, and I guess I was in one of my “down” moods and irritated by the upbeat MS ads I had been seeing everywhere. I was tired of all the happy, happy posts on FB, and wanted to express my real feelings at that time.

Truth is, people need EDUCATED about MS.  It sucks. It’s hard. And I’m tired of the pretentious posts by people who glorify that that “MS” doesn’t define me!  And they show people with MS doing all kinds of things with wonderful results.

I want honestly. Realism.  Does that even exist anymore?

For all of you that so generously given me your support, I can’t thank you enough.  It’s lifted the air under my wings, and when ready, I will move on.  I love you all.

Debbie
www.DebbieMS.com
Author, Trained MS Counselor, MS Survivor

 

 

An MS Journey

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“A Picture of Health on the Outside”

I was only 25 in 1980 when my MS symptoms started. My career was taking off, I was newly married, and my husband and I were active outdoors doing things like skiing and dirt bike riding. Life was good. But like all newly-diagnosed people with MS, the fear of having the rest of my life ahead of me with a chronic, debilitating, progressive disease with no cure was frightening to say the least.

What kind of life could I expect?

Flash forward to present day, 35 years later. Life has been good despite the challenges of living with MS while also dealing with other challenges in life that “normal” people endure. Adjustments to changes in my life seemed constant, as my MS Blogger Buddy Nicole Lemelle would say, would become “My New Normal.” And I’m currently facing two more…

Truthfully, I hate MS—it’s interfering, unpredictable, and invisible in so many ways. I didn’t have a choice about getting it, but I did have a choice about whether I was going to let it control me or manage my life. It took time, but I learned to manage my MS well. It helped that I am a positive person with an “I can do this” attitude.

Difficult decisions had to be made—giving up my career, having only one child, going on disability, having to move out of my house… It was hard. But amazingly for me, in the end each difficult decision resulted in a good outcome.

I can honestly say that I have, and will continue to have a fulfilling  life with my husband of thirty-seven years and my 32-year old son. Not only have I been an avid swimmer, crafter, and reader for as long as I can remember, my love of history and nature was satisfied after visiting all fifty States, seven countries in Europe, Canada, Mexico and the Caribbean. Many of these trips I made in a wheelchair.

As I journeyed through motherhood, I enjoyed being a soccer mom, wrestling mom, homeroom mother, and a volunteer in my son’s school, church and community. In-between, I learned Spanish and tutored high-schoolers for fifteen years. And I was involved as a volunteer and in other roles in the MS community for the past thirty years. I’m proud to say I authored a book, Managing MS: Straight-Talk…  published in January 2012, and since then learned social media and built a website through which I have interacted within the MS community since.

I have always practiced health and wellness as a critical component of managing my MS and chose my medications carefully. Good sleep, regular fitness, healthy diet choices, stress management… Recently at my annual physical, my doctor said to me “I have good news and I have bad news.”

The good news? Out of all her patients that day, I was the healthiest– perfect scores on all my tests: blood pressure, weight, cholesterol, pulse, circulation, Vitamin D, calcium, and all the other things that are measured when blood is checked.

The bad news? I have severe osteoporosis in my hips and osteopenia in my spine—the worse she has ever seen. I had most of the risk factors for it: genetics, years of steroids, being thin, post-menopausal, and little weight-bearing fitness due to being in a wheelchair for fifteen years. The first of two new adjustments that I have to research and work on. This is serious stuff.

When you look at that picture of me, it is a definite portrayal of that old expression that makes all of us with MS cringe: “But you look so good!” You can’t see the osteoporosis, just like you can’t see so many of my MS symptoms. Though I use a scooter or wheelchair because I can’t walk anymore, many folks have asked me if I had an accident. They can’t see the pain, the numbness, weakness, the bladder/bowel problems, or the fatigue and emotional issues that I live with daily.

And now that the new ridiculous TV commercial about Tecfidera is airing, people are getting the misconception that there is a pill—a cure—that Relapsing/Remitting MSers can take that will give them the ability to be active and normal all day long. What a hurtful setback for me and all of the other MS patients that have been trying so hard to get people to understand what MS really is all about.

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                                                     Shame on you, Biogen.

I don’t know. At first I thought that no awareness was better than misleading awareness, but maybe this commercial will stir up the pot and get people talking more about MS.

 

Throughout my entire life, I have always been a doer and a helper with some purpose to serve. Even in the toughest spells throughout my life due to MS or something else, I forged forward to reach out. However, I’ve reached the point where I’m so tired and I hurt almost all the time now. I have been wrestling with this question for a while, “Is it time to quit?” That means the second, big adjustment into unknown territory—true retirement.

 

Actually, I won’t let go of everything completely; I will share and care about MS on a limited basis through my social media sites. But I’ll let the MS blogging be carried on by great, credible others that I got the privilege of knowing from social media and attendance to a MS Blogger Summit sponsored by EMD-Serono/Pfizer:

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MS Bloggers and some Significant-Other Caretakers

   (Sitting, L to R)
Laura Kolaczkowski
Lisa Emrich
Nicole Lemelle,
Lisa Dasis
Yvonne Desousa
Debbie Petrina
(Standing, L to R)
Jon Chandonnet
David Lyons
Stuart Schlossman
Dave Bexfield

There are other great MS bloggers around too, such as those on Multiple Sclerosis.net, that can be trusted to obtain quality MS info, inspiration and education.

Living with MS for 35 years and being involved with the MS community in so many ways teaches a person a lot of things. This is the last page of my practical MS guide book Managing MS: Straight Talk From a 31-Year Survivor that I published in January 2012:

Final Words of Inspiration

September 28, 2011

Life is precious, challenging, and worth getting out of it what you can.
Being a lover of American history, one of the items on my bucket list was to visit the actual trail of the Lewis & Clark expedition. I just returned from an RV road trip with my husband and brother to do this. During the trip, I reflected on the similarities of their journey and life with MS.

When Lewis & Clark began their journey to the Pacific Ocean across the continent, they went into unknown territory. Daily they encountered obstacles in the wilderness they had to overcome, and had to rely heavily on the support of each other/ strangers, their skills, ingenuity, and creativity in order to survive and prevail. The team of thirty-three persons suffered; one died. They experimented. They documented. They learned. They managed and accomplished incredible hardships. There were moments of the deep despair and defeat, and moments of high joy and success.

They found their way. I found my way. You will find your way.

                                                                                       Debbie

www.DebbieMS.com 
Author, MS Counselor/Consultant

 

*Image courtesy of “rakratchada torsap” portfolio at Free DigitalPhotos.net

Is This How You Feel?

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Confused? Afraid? Newly diagnosed? Think you or someone you know might have MS but don’t know where to start? Weird things going on with your body and you don’t know what to do? Your neurologist is not helpful or available? Are you lost in mounds of info?  I was in these shoes once a long time ago.

Since I have lived with MS since 1980 and have been involved with the MS Community for nearly four decades, I know this disease inside and out. Seeing a great need to have a lot of credible “What-to-know—What to Do” MS information all in one place, I rolled up my sleeves and have been hard at work to help.

Managing MS a simplified, practical, all-in-one self-help guide for managing and understanding MS. I authored and dedicated this book to my MS peers to help them and their loved ones live with this invisible, unpredictable, disabling disease. Within hours, the reader will gain knowledge and support so that action can be taken enabling better control. There are many books about multiple sclerosis but I like to point out these things about mine:

• I felt it crucial to make it an easy read using a tone, words and expressions that would enable the reader to feel comfortable. Like I am talking at the kitchen table with them. Living with MS is frightening; one of my objectives was to help reduce the fear.

• Living with MS is not easy and is very complicated in many ways: the symptoms, the treatments, the medical professionals, relationships with people, the emotions, and the advancing disabilities. Thus, another objective of mine was to offer guidance and tips for managing these things in a manner that is easy to understand—like an instruction manual. I strived to make it compact, informative, and inspiring.

• This guidebook is a collaboration of both my experiences and those with peers, MS bloggers, professionals, and others that I interacted with about MS in for decades.  It was read and endorsed by health care professionals in different fields that I believe lends credibility: an MS specialist neurologist, an internist, a MS physical therapist, nurses, dietitian.

Who should read this book? Anyone who might have MS, has been diagnosed with MS, family, friends, or people who deal with MS patients such as doctors/healthcare personnel.

Diane Perry, NPC,  Consultants in Internal Medicine in Glendale stated:
“As a nurse practitioner, the book opened my eyes to the effects of the disease on my patients’ lives and their needs. This is not a textbook read.”

Carol Daily, CRNP MSN, [PwMS] in her review said “This book should be given to every person having MS, I encourage any MS organization, medical staff, family or friend to do so and to read it also, especially the medical staff, (so you guys can give better advice).”

I counsel, write, research, and advocate awareness/education of MS through my website and other social media. Continuously. This is my purpose in life,

Please go to my website, check it all out, and decide for yourself. If you do read Managing MS, make sure to tell me what you think in a review or an email through my website.

 

Debbie Petrina
Author of (2nd Edition) Managing MS 
Moderator, MultipleSclerosis.net 

 

 

 

Why MS Doesn’t Scare Me Anymore

“Overcoming Fear”

January 11, 2015

Fear can be paralyzing. It interferes or overtakes one’s thoughts and actions. Fear causes immense stress. People with MS are confronted with it before, during and after diagnosis constantly. After all, there is no cure for MS, no two cases are alike, and it is highly unpredictable in its course.

To make matters worse, fear is intensified by what is read or said by others, health professionals and social media. The fear of ending up in a wheelchair or becoming very mobility impaired; the fear of losing cognitive abilities, the fear of losing employment or becoming incapacitated….

Even MS Associations who try to portray MS in a positive light often unintentionally create fear due to their messages of “get on a treatment ASAP” or “you need to call your doctor…” Lately, all of the emphasis on cognitive issues causes misconceptions that losing one’s mental faculties is inevitable; or a memory problem such as brain fog is due to MS.

I lived with that fear of the unknown, and with the thoughts of the many “what-if scenarios.” After my first ten years of living with MS, I didn’t fear it anymore; and I still don’t.

Why not?

• As time went, I realized that the more knowledge and experience I gained, the less fear I had. I got to know my body relative to my own MS patterns and responses, adjusted my lifestyle, and learned how to manage both my MS and my personal life. I felt more in control of my MS; the more control I acquired, the less fear I had. Yes—MS is a manageable disease.

The most common triggers of MS symptoms are stress, fatigue, and temperature/weather changes. Learning how to manage these triggers usually settle the symptoms down and prevent a relapse. By not managing them, they will become chronic which will lead to a flare/relapse.

• Research taught me that statistics were on my side. Here are some major fears, with research to show that they are not as bad as many think:

**It is estimated that 40-50% of people with MS experience mild to moderate impairment; severe cognitive decline like dementia are extremely rare (source: MSIF.org). Check out this MS post—“Are Cognitive Problems Blamed Too Much on MS?”

** Over a lifetime, only 20-25% end up confined to a wheelchair. That was the statistic in 1980, and it probably is less today due to the development of the disease-modifying drugs that have been available since the mid-90’s.” Check out this post “The Truth about MS and Wheelchairs”

**There are more benign cases of MS than publicized. For example, a current starting point is to get specific data on DMT’s from reliable sources. On Page 13 of “The Use of Disease-Modifying Therapies in MS: Principles and Current Evidence” (The MS Coalition– http://bit.ly/1oEnTqY ), the colleagues point out that 50% of persons diagnosed will have “benign MS”. People with benign MS will have an Expanded Disability Status Score (EDSS) 6 and 23% had converted to SPMS.
Read closely, and always double-check hear-say. Another post to read–“Where and how to get your information.”

• Reaching out and accepting support from family, friends and the MS community helps immensely in minimizing stress. My physical, mental and emotional states were significantly improved. I wasn’t alone. Those that really want to help—let them and tell them how.

• Having a focus on overall wellness and health is a priority. When one feels better physically, one will also feel better emotionally and mentally. It is common sense but it’s amazing how many people lose sight of this. In addition, I take all measures to prevent flus, colds, sickness and injuries. These will lead to relapses, thus frequently resulting in MS progression.

• The advancements in research for treatments and a cure have been increasing exponentially. It WILL happen in your lifetime.

• The brain is a powerful organ, and it is gratifying that brain health is finally being addressed. The brain CAN be retrained and repair itself to a certain degree. I had symptoms for years that I no longer have.

I’m an ol’ MS vet, and there are many of us out there. We are folks who have lived and survived MS well for decades, and most would agree with what I just wrote. We know, and we are a positive group. And more positivity will also reduce fear.

It took me ten years to get over my fear of having MS; nowadays, that span of time should be much shorter. After all, it was still the dark ages for both MS and me between 1980 and 1990. Times have changed.

www.DebbieMS.com
Author, MS Counselor, Living with MS