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

Attitude is Everything

“Taking Control of Yourself”

January 23, 2013

I was in the process of writing an article about the ramifications of mental and emotional health when living with a chronic illness like MS, when I came across the following post today while perusing an MS connection online site. It is so incredibly good I am taking the liberty of sharing it to others I know with MS.

“Hi everyone, I have been away from this site for a long time. Just recently got back on. When I first found the site I was looking for help with my MS. Received really good advice then didn’t come back regularly as I should have.

I have learned a lot in the last 7 months. I believe in “pay forward” so I wish to share this with you. I hope it helps and doesn’t insult anyone. The bottom line is I am in control of what I choose to do and not to do, remember this throughout this message.

I have had a multitude of symptoms. Number one is DEPRESSION! I believe this is the cornerstone to a lot of my choosing not to do. I have done mental health therapy with a counselor, PT and OT. Through all of this I became educated. Now I am realizing that I chose to stay in my poor me syndrome. I was so sick of doctor appointments, running constantly which cause me to be exhausted and frustrated because no one could fix me.

I hate the cognitive fog, forgetfulness, physical limitations, sexual dysfunction, tremors, pain, confusion; I hated every part of MS and what it has done to me. I missed the old me and desperately wanted to be fixed without having to work so damn hard to try to get back to the old me. My neurologist told me “change your attitude and you will feel better”. I was pissed off to say the least. It has been 2 months since I have seen him, and I now know he is right. I am in control of my attitude.

My depression was preventing me from living, and I chose to stay this way in misery. We increased my depression meds and I slowly began to change my attitude, which is very challenging with the unpredictability of MS.

I am trying to laugh alot more and trying to adapt to my challenges. Helping myself get enough sleep, drinking fluids, getting educated, another words helping myself. There are days I eat the wrong foods, drink too much caffeine, smoke too much (still working on this need to quit) and those days I know I have myself to thank for how crappy I feel. Exercise is very helpful mentally and physically. I wouldn’t exercise because I couldn’t do what I used to do, so I chose not to do it. This only hurts me more.

So I guess what I want to tell you all, is look deep into yourselves and do a personal inventory. I had to realize I can’t be fixed. No cure for MS. Accept this. Then change your attitude from can’t do to I can do. Find the laughter! As hard as it is to do, acknowledge we are not who we were before MS. We are trapped in this auto immune, unpredictable disease. Say this totally sucks. Then move on. Start over building the new you. Challenge yourself to be the best you can be each moment, acknowledge your success and failure. If you fail, look at the reason why, did you bring this on yourself? Sometimes we cause the situation, other times it’s just the MS. If the latter is the cause, move on; adjust then if you can laugh through it. But you have to move past it.

I type these words and know some of you won’t get it and maybe it will help some of you. I chose not to do a lot; I needed to wallow through the misery of MS. I will have bad days, and if I chose to stay there, this is my choice. I can’t imagine anyone not being depressed with a diagnosis of MS. It’s so devastating. I remember when I was diagnosed I thought “oh thank God I’m not crazy”; there was a reason for what was happening to me. But then I allowed the MS to make me crazy by wanting to be fixed and have all this crap go away. Well it doesn’t and everyday is a new day and full of challenges and ups and downs.

Also, how many times have we heard stress will exacerbate our symptoms, “try to avoid stress”? OMG! Are you kidding me? Ladies and Gents life is not stress free nor is it avoidable. The key to success is how you handle the stress, not how do you avoid it. I mean really you have this incurable disease that has robbed you, this is stressful.

I have a new attitude (most of the time) about stress. It is what it is. I look at stress and think how does this really affect me? I can allow myself to get all wrapped up in the drama, or I can meet it head on, fix it or forget it. If you can end the drama, do it. Set the boundaries. Don’t allow others to suck you into things that really don’t affect you. Shelter yourselves from the unnecessary drama. This only zaps your energy and well being. You need to protect yourself. Stress is like infectious bacteria that want to invade you and make you sick.

Set boundaries, make them know and put up your shield. Some people may think you are being mean or uncaring. So be it. I know what I need to do to keep myself upright and moving forward. If they can’t accept this, then I guess they are not ready to accept me for who I have to be. I can help them but only if they don’t suck me into the stress and drama.

You need to see things in black and white at first, don’t allow a gray area. As I learn more about me and what I can tolerate, I may be able to not have such a strong force field around me. But for now this is what I need to do for me. This saves my energy for the moments I have to really deal with big stressors that take me by surprise. Then when I have those stressful times, I can take a realistic approach to how to not allow it to make me sick. I can think clearer and reset the boundaries for each “big” stressful situation. May the force be with you all!

I hope this rambling helps most who read it. Some of you may think I am nuts (sometimes I am but my counselor assures me I am not crazy). The bottom line is take care of yourself first, everyone else comes after you. You need to find your “new” self and set realistic goal and boundaries and make them known. Say them out loud for loved ones to hear and understand. Ask for help, but don’t ask everyone to do everything for you. Rise to the challenge and find the “new you”. I never thought I would say this, but MS has helped me to see how the old me really wasn’t all that healthy mentally or physically. The new me will be a new and improved, just slower but I have a better outlook today than yesterday and for that I am grateful.

Best wishes to you all! Your friend in MS, Michele”

No Michele—you are not rambling and you are not nuts. You are an incredible inspiration. There is a sign in my doctor’s office that reads “Attitude is everything—Pick a good one!” I love yours and the next time I get down in the dumps and have trouble getting out of it, I will read your post. I give it a AAA+ grade, for An Awesome Attitude.

There is no mystery that people with positive attitudes are happier, live longer, and are stronger.

Thank you.

www.DebbieMS.com

New Beginnings in Life

“Entering the Unknown”

May 14, 2012

I ran into my neighbor’s son yesterday and he told me that he was graduating from high school.  When I asked him if he was excited about going to the university, he admitted he was nervous.  It is out-of-state and he will know nobody.

The fear of the unknown.

As we journey through our years of life, we have many new beginnings that we will encounter, some big and some small.  Some we choose and some we don’t. Our first day of kindergarten, our first kiss, our first menses.  Our first fender-bender, marriage, house, baby and loss of a job or loved one…. The diagnosis of a disease or serious illness.   At first, we don’t know where to start or what to expect with each of these new beginnings.

Some things turn out easier than expected, and some end up being more difficult.  Many things happen to us that are unpredictable and out of our control.  We need help to figure things out, find it through a variety of means, and most of the time we learn how to manage.

As we proceed, the unknown becomes more known and the fear becomes less fearful.

A huge new beginning in my life was the onset of multiple sclerosis in 1980.  Anyone dealing with MS knows it requires constant learning and adjusting to new obstacles, lifestyles, and goals.  This incurable, complicated, and unpredictable neurological disease is a full-time job with many new beginnings in itself and lots of unknowns to face.

But I learned the ropes in managing it so that I could enjoy life, despite the setbacks.  Along the way I also had to achieve other things in life, such as motherhood, career changes, moving across the country and having to live on my own for three years while in a wheelchair.

Now I am involved with another new beginning. I chose to become an author and write a book.  Recently published, I wrote Managing MS: Straight Talk from a Thirty-One-Year Survivor for the primary goal of helping persons dealing with multiple sclerosis.  I get up close and personal when I share my experiences and expertise from my own life’s journey in this handbook.

Once again, this new frontier to explore has been a big challenge. The world of publishing and marketing books has changed drastically in recent years because of social media.  I’m slowly transforming from a dinosaur to a new chick in this technological arena and it hasn’t been easy.

Though frustrating, I’m not afraid of the unknown anymore.  I will read, experiment, and ask for help when needed in learning how to accomplish my mission.

I so desperately want to succeed, but I’ve also learned to be patient and just do my best.  Life has taught me this, particularly a life living with MS.

www.debbiems.com