Author Archives: debbie34_wp

The Power of a Smile

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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 

 

NEWS: Mental Health Hotline 988

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Let’s face it—even the strongest person can crack. I bet everyone has been stricken with an “in-the-moment” moment. If not yet, you will be whether you want to admit it or not.

When it does, there’s a confidential lifeline for you. Call 9-8-8, Mental Health Hotline 988. 

Having a mental health crisis has a new easy-to-remember, three-digit tool to get 24/7 help: Dialing 9-8-8. The 988 Lifeline is not new, though the 988 digits are. The number is meant to replace the National Suicide Prevention Lifeline (800-273-TALK), though 800-273-TALK will remain active.

Note: The new 988 line is not solely for suicide prevention. I like this distinction. Federal officials say it’s for anyone experiencing mental health related distress, whether that is thoughts of suicide, a mental health or substance use crisis, or any other kind of emotional distress. People also may dial 988 if they are worried about a loved one who may need crisis support.

Most calls to the National Suicide Prevention Lifeline historically have been resolved through the phone call itself, without needing to dispatch a mobile crisis response. The vast majority of calls don’t have to have a higher level of care, which is reassuring.

Make sure to spread this good news.

 

Debbie Petrina
Author of Managing MS 
Moderator, MultipleSclerosis.net 

A Remarkable Story about Life in Bush Alaska

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Melissa Cook spent twenty years living and teaching in remote Alaska.  She is now an award-winning author of her memoir The Call of the Last Frontier. Melissa has MS and authors her blog MSsymptoms.me.  I just finished reading her book and want to tell you what I think:

Read it! You’ll be glad you did.

I have MS and took a 16-day land and sea tour of Alaska some years ago. My visiting experience is miniscule compared to this admirable memoir of Cook’s life in the Last Frontier. Our luxury cruise ship navigated an horrific 2-day storm with 90 mph winds off the coast of Ketchikan. To read about what it took to live through similar winds and constant rains in the bush is unimaginable.

Visiting Alaska was wondrous, but Melissa’s personal account of living there is extraordinary through her eyes, words, senses, and thoughts.  There is little more I can add to other reviews of her book on Amazon, BookBub, and Goodreads.  Brave isn’t a big enough word to describe her “adventure” as she refers to it. I have grit, but not this much.

The only thing I wonder about is the extent MS really had on her; I think she downplayed its true impact on her physically, mentally, and emotionally. Nevertheless, her strength and resilience to survive the Alaskan bush with MS is remarkable.

Melissa now lives in Wyoming and documents her current adventures on her You Tube channel, Wyoming Jeepers. (I’ll stick with cruises!)

If you read Melissa Cook’s book, be sure to write a review telling her what you think.

Debbie Petrina
Author of Managing MS 
Moderator, MultipleSclerosis.net 

Shingles: Beware!

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My husband and I have traded shoes. He’s almost always the one who feels helpless when MS causes my pain or discomfort. Now I feel helpless watching him grimace from the pain caused by his shingles. The difference is I couldn’t prevent MS; he could have prevented shingles.

It started as a few tiny bumps on his back last week that looked like five or six small mesquito bites. It was itchy and my husband assumed he was bitten when working near the pond outside one humid morning. Over the next few days, more little bumps appeared and despite my insistence that he see the doctor asap, my stubborn anti-doc hubby put anti-itch cream on it and said it wasn’t necessary. BIG mistake.

One week later, he woke up and his back looked like the photo on the right. Alarmed, he called the doctor, and the appointment was made for one hour later. Yep, it was shingles. Yep, it was too late to start an anti-viral to lessen the achy, burning symptoms he was experiencing. No, there was little he could do except apply cool compresses for relief. The shingles had to run its course that would last at least several weeks and could continue for months. The rash is still spreading. And he is miserable.

I’m familiar with shingles, and having MS, that’s the last thing I want to get. Even without MS, it’s something nobody would want. There is a highly-effective vaccine available now called Shingrix that can prevent it. I wrote about this in my book, Managing MS, in the sections about Vaccines and Making Decisions when Managing MS:

“People with MS may be at higher risk of getting shingles, the flu, etc. because of reduced immune system function from disease-modifying treatments. High-dose steroids, often used during relapses, may also increase the risk.

When I was deciding what to about the Shingrix vaccine, I initially researched the vaccine from diverse, credible online sources. Then I asked both my neurologist and PCP about it. Finally, I asked other MSers and “normal” people I knew who received the vaccine about their experiences

People with MS can’t receive vaccines that contain a live virus. It puts them at even greater risk of developing the very disease they are trying to protect themselves from. Since the Shingrix vaccine to prevent shingles does not contain a live virus, it is considered quite safe for people with depressed immune systems.

Shingrix is recommended for folks over 50+ years. The occurrence of shingles is highest when you are older, sick, extremely stressed out, have a weak/depressed immune system. (e.g., from a physical injury, steroids, chemo, DMTs…) About one out of every three people in the United States (if they had chicken pox) will develop shingles in their lifetime. (Source: CDC) Being a senior, I know a lot of people who had shingles; it is nasty! My opinion? I’d take the shot over getting the virus.”

For more information, click on this recent article entitled, “Should I Get the Shingles Vaccine If I Have MS?”

If my instincts cause me to feel unsure when making a decision like this, I follow my mantra, “When in doubt, don’t!” It’s helpful to take a pause and think through it again another time, evaluating the pros and cons. My pros overrode the cons with this vaccine, and I had no doubt that I should get it despite the possible temporary side effects.

It’s something to seriously think about today and discuss with your doctor.  If taking DMTs or steroids, consult with your neurologist about possibly adjusting the timing MS treatments so that vaccine effectiveness isn’t lowered.

 

Debbie Petrina
Author of Managing MS 
Moderator, MultipleSclerosis.net 

The Bucket List

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A positive thing about getting MS is that I don’t put off tomorrow what could be started today, because tomorrow may never come.  I learned this before my MS dx at 25 yrs. of age. I was only 17 when my dad unexpectedly died.

Things like this alter not only your life, but your perspective. Whether it was my youth or personality, I had goals in life that included a huge bucket list of things I wanted to see and do. I love travel, nature, history, and culture.

Going to Alaska was a dream on my bucket list that came true. I was in my fifties, and despite the nervousness about my ability to handle such a trip, I was determined to go.  I often say that my legs don’t work, but I have a mouth and a brain to get what I want. It took a ton of planning that was done a year in advance, but boy, it was worth it.

My accessible trip–

  • Used planes, railroads, coaches, boats, a cruise ship…
  • Toured Anchorage, Fairbanks, Juneau, Vancouver…
  • Experienced Glacier/Denali/ Wrangell St. Elias National Parks…
  • Included roadhouses, the Alaskan pipeline, gold mining, northern lights…
  • Viewed moose, eagles, caribou, bear, and even an Iditarod race husky ‘boot’ camp.

If you or someone you know in a wheelchair wants to go to Alaska, here is repost from my blog explaining what I learned and how I did it–.Tips to Cruise/Tour Alaska in a Wheelchair (with videos)

MS is unpredictable, but so is life. If there was an obstacle at some time point, at least I tried.

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

“I Live With It, Too.”

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It was a high-tension day recently for both my husband and me, for reasons unrelated to MS. Stress levels reached the top and were in the red-flag zone.

It’s hard to be patient with some things. Sometimes patience runs out. Often, words are said that are not meant.

Snarky remarks over trivial things grew into an argument. He started yelling and swearing. I internalized it until my pressure cooker lid exploded. I started yelling and swearing back. The ugly exchange came to a head like this:

Me:  I have a disease of the nervous system. Don’t you understand what stress does to my MS?

Him: Yes, I do– I live with it too. Ruined my life.

I became speechless and retreated. It was true, and at that moment there was nothing more to be said.

Yes, MS affects both of our lives—socially, mentally, emotionally, financially. I may be the one suffering from things like pain, walking, fatigue, etc., but my husband feels the pain of watching me struggle and tries desperately to help reduce the painful struggles for both of us. We may walk in different shoes, but that doesn’t necessarily mean one pair is better or worse than the other. The irony is that neither of us would trade our shoes with each other.

The non-MSer can opt out. Lucky for me, my hubby didn’t. We survived MS together for 42 years of our marriage with a lot of difficulty. But it doesn’t end with just your partner.

The number of people living with MS is estimated to be one million in the USA, and 2.8 million worldwide.  Actually, the number of people REALLY living with MS is much larger when partners, children, other people that are part of our daily lives are considered. This includes many of our doctors and others treating MSers who try so hard to help us feel/do better but feel helpless when they can’t.

Need some tips, stories, and strategies for interpersonal relationships? Check out my book, Managing MS, or one of many of my relationship blog articles.

It’s a huge burden for a hell of a lot of people.

 

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

Is There Light at the End of the Tunnel?

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On the cusp of our MS diagnosis, we are gripped by fear and panic. With no cure, we envision ourselves entering a dark tunnel of unknowns. How do we begin living with it? What will life be like? What will be at the other end of the tunnel? A never-ending list of questions follow.

Years ago, I read a story about a lady who was on her way to her dream vacation in Italy. Somehow, the plane got diverted, and she ended up in Holland. The dream was shattered, and now she was in a country she knew nothing about. Grief—denial, anger, sadness, bargaining… Having no choice in the matter, she finally accepted her fate.

The lady took action and learned about Holland as quickly as she could. She discovered that Holland turned out much better than she expected. There were tulips, windmills, Anne Frank’s house, Van Gogh Museum, amazing architecture, canals, gouda cheese………

Forty-two years ago, I was looking into that dark tunnel. I took action to make the best of an unplanned situation.  Now, 42 years later, I’m on the other side of the tunnel.  It all turned out much better than I expected. As I travelled through the tunnel, the light at the end got bigger and brighter. The grief in my “Good grief!” moment evolved into something I call “good” grief.  It’s all explained in my book.

Opportunities aren’t opportunities unless you act on them. If you make the best out of an unplanned circumstance, it may turn out better than you thought.

Is there light at the end of the tunnel?  The choice is yours.

 

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

The Age of Overkill

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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.)

?????????

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

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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

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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