International MPN News, Science & Opinion

THINKING OUTSIDE THE BOX

by Jeremy B. Smith

Welcome to MPNForum and my regular column.

MPN Life is about realizing being diagnosed with an MPN is not an end to life, but a new beginning.

MPN Life is a fresh approach to MPN thinking. Instead of just focusing on the usual pharmaceutical approach to living with an MPN, which is what most of our doctors and pharmaceutical companies do, together we will focus instead on the amazingly important role exercise and nutrition can play in our lives.

Each MPN Life column will focus on ways to improve your quality of life. Including inspirational tales from MPN patients and Doctors. Some of the topics we will explore are exercise and meditation, Yoga, cycling, swimming, food, diet, music and improving your mental health, here we discuss it all.

For those of you who do not know me, this year I celebrate my 22nd year of living with Polycythemia Vera. I also celebrate my tenth year of living life thinking outside the box and how it’s helped me manage my MPN while dramatically improving the quality of my life.

When I was first diagnosed with PV, I was scared. I believed my life, as I knew it then, had come crashing down like an out of control locomotive thundering off its tracks. What I could have never imagined was my disease was going to take me on an amazing journey of self-discovery that did more than save my life. It provided me with all the joy and happiness I used to only dream about.

Thinking Outside the Box

After years of phlebotomies and hydroxyurea with no change in the long-term prognosis, I awoke one morning and realized I hit bottom. This waiting, hoping for a cure or worse, waiting to die, was unacceptable. It was time for change and to take a torch to these long pity parties. There had to be a way to stop the mind-draining impact of fatigue and depression.

I was in my home office looking up at an Apple Computer poster of Albert Einstein with the heading “ Think Different.” And that’s when it hit me. I remember thinking “even if they find a cure for my PV I am still going to die. “ That thought alone began to free my mind.

I fired up my Apple iMac and typed the following: “Thinking Outside the Box a Non-Pharmaceutical Approach to Dealing with Polycythemia Vera.”

Over the next several hours I wrote and I wrote. I could not stop. It was just like the scene in the movie Forrest Gump where Forrest starts running and running and running. I felt so alive I could have written for days. In the end I created a strategy for myself and a much healthier way of living with my Polycythemia Vera or even without.

It is founded on the following four principles:

1. Exercise. ( Six days a week) Does not have to be a gym and start out slow.

2. Nutrition: Including supplements.

3. Physician involvement in all areas of the process.

4. Live Life to its fullest.

Results:

1.Over 18 months I lost forty pounds and have kept all of it off.

2. My body and mind are completely fatigue free.

3. I have found the freedom, love and happiness that had eluded me for so long.

4. When I look in the mirror I see myself as healthy again.

5 .When I talk to others about my PV and they say, “gee you don’t look sick.” I respond back now by saying “I know isn’t that fantastic. I don’t feel sick.”

I created an exercise and nutritional program to live my life by. For cardiovascular exercise I returned to cycling, which, when I was young, was the love of my life. I stopped drinking all carbonated soda beverages of any kind and moved to organic and hormone free meals whenever possible. My intake of sugar and salt was radically reduced. I stopped seasoning my food with salt and sugar would only be ingested if the product naturally contained the sugar… meaning no added sugar to any foods or beverages. Other than coffee or an egg McMuffin once in a while fast food was banned from my diet and replaced by salads, smoothies, Greek style yogurt, fish, fruit, vegetables and chicken.

Exercise would become a six day a week priority in my life. I have tried all different methods of adding exercise to my life and six days a week is what I believe to be the best program.

Please don’t think any of this was easy. It was hard and it’s still a struggle today. But I am in the best cardiovascular and nutritional shape of my life. Many of the side issues I had with PV, issues I hear others mention, are gone as well. Life will never be perfect, I have an MPN of course but I have my life back and it’s a better life. For that I am immensely grateful.

Your Role

MPN Life is our tool to help us think outside the box about our MPNs. With your involvement and support, together we can change the lives of all of us. Lastly I challenge you to find the positive in your MPN. Dig deep. As hard as it may be for you some days, never give up. Know that we are all here for each other and together collectively we are never alone. Next issue: Fatigue, What You Can Do About (It. O, yes you can! )

* Jeremy Smith, diagnosed with PV more than 20 years ago, has been active on Internet patient support lists for most of that time. He is an executive with a marketing company in California,. LevelOne,USA. Contact: Jeremy@mpnlife.com

© Jeremy B. Smith and MPNforum.com, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Jeremy B. Smith and MPNforum.com with appropriate and specific direction to the original content.

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