NEWS: Mental Health Hotline 988

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 

Shingles: Beware!

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 

“I Live With It, Too.”

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 

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

 

MS Awareness: Are We Shooting Ourselves in the Foot?

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

 

What Do You Do All Day?

March 15, 2022

My occupation is now “retired” after being on long-term disability for years.  Child rearing is over. From time to time, the question surfaces, “What do you do all day?”

Now that’s one of those questions that can be tricky to answer, like the question, “How do you feel?”  It depends on who’s asking and what mood you’re currently in.  It’s
a judgment call.

If it’s a casual acquaintance, I give them a few of the basics: I rest intermittently, exercise or swim, read, write, and volunteer when I can.  One of those subjects will usually switch the conversation toward another direction.  There is no sense in getting into the details of what a typical day is really like; it would probably make them uncomfortable, speechless, and sorry they asked.

Besides, everyone throughout their life has something of their own to deal with. Or, getting too specific about what I do can lead into unwanted conversation.  For example, there are the people who want to give advice about all kinds of things, which can get annoying if they really do not understand MS.  And then there are the “one-uppers”; who are more interested telling a personal story that is far worse than your situation.

But occasionally, someone asks me that question in a way with a certain tone that will get a rise out of me.  “So, what do you do all day?”   Even when I used a cane, then a walker, and now a wheelchair; I usually “look so good” and am smiling and perky.  I keep busy, rarely complaining.  It’s like they’re wondering why I got disability from the government or why I don’t want to go out somewhere.

Like most people with MS, I do things on my own as much as possible and strive to maintain independence. But that sometimes can backfire on me. It conveys a message that “I can do it; all is well…” Then if superwoman starts to fall apart, I’m asked “What’s wrong with you?”

We folks with MS endure invisible things like the fatigue, depression, numbness, and weakness that make life complicated.  It doesn’t matter whether we are in a wheelchair or not. We have kids and grandkids, chores to do, errands to run, households to maintain, finances to manage.  Life without a chronic illness is challenging enough.  Throw in MS and the time and energy it takes to do a task double or triples. Often, many things get done differently, partly, or not at all.

But how do you explain all this?  Should you try?  Do they really want to know?  If you think so, maybe take the opportunity to say, “not as much as I’d like, I can use some help.” Or is it easier to just say one thing, and then ask in return “What do you do all day?”

Again, it’s a judgement call.

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

www.DebbieMS.com

 

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

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

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

 

New Release!

Managing MS
A Roadmap to Navigate Multiple Sclerosis

It’s done! The second edition of my book Managing MS is out, and I would love for you to read it. This edition is updated and enhanced—it’s amazing how much has changed and happened in ten years.

As in the past, my mission is to continue educating anyone dealing with MS in an easy, uncomplicated way. In addition to the apparent walking difficulties associated with MS, most people aren’t aware of the numerous invisible symptoms and stigmas that are part of the disorder. “What to know, what to do”, is all in one place.

This second edition has more information, resources and links for readers to reference throughout the book. People acquainted with an MSer will learn how to help them. Read what my friend Dave Bexfield, founder of www.ActiveMSers.org has to say:

“Debbie Petrina has managed to improve her no-nonsense, been-there-done-that guide to navigating the often, choppy waters of multiple sclerosis. For personal advice without the unnecessary puffery, it’s just what the doc ordered.

If interested in a copy, here’s the link:  http://debbiems.com/orders_275.html  If you like it, please write a review on Amazon. or wherever you bought it. And then, spread the word to help others understand multiple sclerosis!

www.DebbieMS.com
Author/MS Consultant/Living with MS

March is MS Awareness/Education Month

“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