Celebrating our First Year
Before I begin my column a special acknowledgement is in order, as this month is the one-year anniversary of MPNforum Magazine and our companion Facebook site. Starting a magazine run mostly by patients with a life threatening disease, and with no financial support, requires a lot of chutzpah.
In the beginning, Zhen, Arch and I were just three merry men
out to create a new place for MPN patients to find additional support. We were fed up with the personal bull that dominates lists. We also knew no one had really harnessed the Internet in all its technological glory. We could do much more by telling stories and making the community part of the publication. This completely new graphical format enabled us to conduct industry interviews and integrate video in the process as well
It was tough in the beginning as we were not welcomed with open arms by everyone. A majority of the list owners were threatened by our announcement and quickly went on the offensive. One list owner claimed we were out to compete with her and warned her members not to seek out our site.
She even started a conspiracy rumor that we had partnered with her arch nemesis and that this person was part of our organization. When questioned about this “secret” source the response was I have to protect my members. Another claimed we were receiving financial backing from a pharmaceutical “Sugar Daddy.” How I wish that rumor had been true!
In the face of all of this Zhen picked up his phone and delivered these memorable words to inspire me not to give up: “What are we made of? Our fathers came across the prairie, fought Indians, fought drought, fought locusts, fought Dix!” Oh wait. Mel Brooks and Richard Pryor wrote those words for the movie Blazing Saddles. While I can’t share with you what Zhen actually said, these words echo his well said vocal inspiration. The nice thing about the passage of time is it allows these false accusations to go away as the truth becomes clear.
Not all of you know the long hours Zhen spends creating each issue. This is a real publication with real deadlines and Zhen is the glue that holds it all together. Nor do you know the moral challenges and vicious personal attacks Zhen has faced in his role as editor and publisher. Every time when faced with tough editorial decisions Zhen has come down on the side of doing what is right. Unconcerned over the price he would pay for doing so. Most importantly for me Zhen is my friend and I hope all of you get to know him like I have.
Arch you are the icing on the cake my friend. Your unique insight shown in your articles and wonderful quotes on Facebook keep us all smiling and interested. I have not had the time of late to participate like I did in the beginning but I always check in to read Arch’ quotes and of course Bonnie’s travels with Joe on Facebook.
My Favorite Story
I am not just a contributor but a reader as well. The April Issue I believe had the most amount of stories about our community members since we began publishing twelve short months ago. I have a lot of favorite of stories that I often go back and reread but I have always been a sucker for a wonderful Love Story and we were all fortunate that
Bonnie Evans shared her “Love Story” featured in our August 2011 issue.
For those of us who have been part of the MPN Community we have all traveled along side Bonnie and Joe as they travel around the World. A part of me always wondered how did Bonnie and Joe meet?
The opening line, begins with,“ This is a story that starts with a dance.” I stopped after reading that one line and reread it several times as it really got me interested in reading her story. As I read on I was deeply moved. I quickly realized I was reading a real love story. A real story about love, life, marriage and commitment that reads like the opening few pages of a great screenplay or novel. Bonnie thank you for allowing us in to your life and for also sharing with us your travels with Joe.
Lastly to everyone out there we need your help going forward. While I will continue with my column when I can. I do not have the time to contribute in the way I have in the past. Newly married and running a Company keeps my life busy. And after reading this month’s column you will see how busy I am going to be over the next several months. I will continue to contribute but my role will be smaller. I am counting on all of you to make sure MPN Forum is around forever and to help Zhen lead us in to infinity and beyond. And with that on to my new column!
The Life of an MPN Road Warrior.
by Jeremy Smith
I write my column because I want to share my stories with you and let you know that it is possible to return to a normal life after being diagnosed with Polycythemia Vera.
I am a business road warrior about to kick off a season of business trips starting this month. From March through June I will be on and off airplanes and in and out of various rental cars some nineteen or more times. I will travel to Atlanta twice, Boston twice, Washington D.C twice, Chicago and Albany, NY twice. While in Albany I will drive two hours from the airport to our client’s offices for a plant tour, but I will stop in Cooperstown, NY and finally visit the Baseball Hall of Fame. I will be in Dallas and Plano, Texas, New Orleans and Las Vegas as well as Portland, Oregon. These are just a few of the cities and towns I will be in. Approximately 26K flight miles in ninety days and this does not include any vacation time I might squeeze in. I live on Airplanes.
I am playing in three charity golf events over this same time period. Twenty-seven holes of golf over six weeks. Never mastered the game. Not sure if anyone ever does. Never loved the game. I do not even like Golf. But it’s for charity and my clients insist I attend. When I was a kid I was not allowed to play golf because the golf courses in our town would not Jews or African-Americans play at their clubs.
Last year I received a letter from American Airlines thanking me for flying one million miles over the past two decades. Southwest Airlines sent me a thank you for flying over 100 flights with them last year. And yes for the past two decades I have done all of this, and continue doing so, after being diagnosed with Polycythemia Vera.
However none of this could have ever been accomplished without my unrelenting commitment to exercise and diet/nutrition. I don’t like getting up as early as 5:10AM to get to the gym by 6AM for spin class. But this is what it takes to end fatigue and provide me with the energy to create a normal life.
All of this is so much easier to do when I am at home. The real challenge begins the moment my plane takes off and the lovely flight attendants begin their famous march down the aisles of the airlines handing out high sugar high carb garbage they serve to us flyers. I am prepared to avoid this by packing my own food ensuring that I am not forced in to this rattrap of unhealthy consumption. Depending on the length of the flight and time of departure I select my food in advance.
I always pack healthy bars. Now I am not talking about the so-called healthy bars that are laced with sugar or sugar alcohols. I try to stick with organic whenever possible but that is not always possible. A mixture of protein and fruit bars is essential to be available at your fingertips. I purchase fruit at the airport if I haven’t packed it. I love bananas. If I do not have time for breakfast I stop at the airport Starbucks or Jamba Juice, no not for muffins or baked items but their instant steel cut oats or rolled oats And NO do not add sugar or butter or anything to your oatmeal other than fruit or cinnamon. Oats will stabilize your blood sugar and keep you feeling full. But if you add all the sugar offerings to it you might has well just suck down a 16oz bottle of Coke- A Cola. Furthermore Oatmeal it’s excellent for your digestive tract.
Next stop is water; get two bottles if your flight is more than 4 hours cause you need to remain hydrated on the flight. The water on the airplanes is awful for you so avoid unless you did not purchase your water at the airport.
I also plan out my airplane exercise program in advance. I know you’re thinking who exercises on an Airplane? With MPN’s it’s essential at the very least to be up and active on flights more than two hours. For every hour of airtime I plan on getting out of my seat for at least ten minutes each time. If you drink enough water you will be getting up every hour anyway. My first hour I stretch and do mini leg squats in the aisle. My next break I walk up and down the aisles for a full fifteen minutes. There are so many exercises you can do on an airplane; it’s simple yet not boring. From using the overhead luggage bins for deep stretches or squats at the back of the plane to jogging in place. Even push-ups in the aisles.
After landing if you have a layover and must have lunch or dinner at the airport make good choices. Lets say your only good choice is a McDonalds. Yes, you can even get by at McDonalds in a pinch without doing a lot of damage. Order a salad but try and get oil and vinegar dressing. Most salad dressings are like eating two slices of cake caloric and sugar wise, plus are loaded with fat. I order a quarter pounder without cheese and toss the bun. I take the patty and mix it in to my salad. Personally I do not use dressing but with the patty, lettuce and tomatoes I have an excellent protein burger that is healthier than what you might otherwise have consumed.
When out on the road and staying at hotels I select hotels with good gyms. I always make notations as to which hotels have the best and worst gyms. If a particular hotel does not have a gym then I locate a local gym nearby or plan a run in the neighborhood outside the hotel. Last month I stayed at the Fairmont in Newport Beach, CA. I stay at this hotel because their gym is first class and their restaurant menu offers healthy food throughout their menus. From Smoothies and Hormone Free protein offerings to Organic Eggs and Steel Cut Oats.
Many Hotel Restaurants while often convenient can be quite expensive. Prior to my trip I search the Internet for a few healthy places to dine out should I decide to do so. While in Newport Beach I chose Dr. Andrew Weil’s True Food’s Kitchen as it was highly recommended. The concept of his True Food Kitchen is to serve dishes that closely adhere to the principles of Dr. Weil’s anti-inflammatory diet. They are intended to be a new kind of restaurant: one in which delicious flavors, healthy nutrients, environmental awareness and an inviting atmosphere come together to create an unforgettable dining experience
Sample dishes include: Wild Smoked Salmon with Shaved Radishes; Lemon Cream & Wasabi Peas; Sashimi Tuna Salad with Avocado, Cucumber, Tomato, Edamame & Ginger; Curry Chicken with Rice Noodles; Tuscan Kale Salad; Cauliflower & Cashews; Herbed Hummus; Green Tea Soba Noodles with Peas; Bok Choy & Lemongrass; Fresh Tomato Pizza with Pasilla Chile & Manchego; Grilled Wild Ahi Sliders with Wasabi, Radishes and Cucumber on Pumpernickel; and Natural Half Chicken with Farro, Walnuts, Dried Fig, Brussels Sprouts & Squash.
When I hear MPN Patients talking about wanting to live a “normal” life again, I understand your pain. But do not let anyone tell you cannot live that normal life again cause you can. And for younger patients, I was diagnosed when I was thirty years old, who still want to continue their careers in spite of their MPN’s. I can tell you it’s not only possible but also very likely.
As long you are prepared to do the work necessary to defeat the fatigue often accompanied by our MPN’s by exercising and eating properly.
© Jeremy Smith and MPNforum.com, 2012. 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 Smith and MPNforum.com with appropriate and specific direction to the original content.
Comments on: "MPN Life — Road warrior" (9)
Ah, the mystery is over – you are in the air more more than the ground and you will have to be grounded in order to keep us informed.
Wow….I don’t know how you do it…I needed a nap after just reading your article.
Besides the difference in producing too much blood….as opposed to not enough as in my case with MF….is the only cure a BMT? What kind of treatment have you had if any? I dont know how you do it…I needed a nap after I read your article.
How I do it is exercise five to six days a week. I could not do it without the aid of exercise. BMT only work in a small amount of cases. I have been on hydrea since 1989 and its worked for me. I am considering INFN dont know yet. There is the medications that are available to us then its up to us to improve our quality of life. I chose exercise and diet as my path and for me I have had an excellent quality of life. I am pretty bias about exercise and diet and not everyone will decide to push through the fatigue and pain as hard as I have to get to the other side. Nor will everyone see the same results. I have radically altered my life on the diet side as well. I believe you must be at the healthiest weight possible to try and reduce the stress MPN’s cause on our bodies.
Jeremy, just another service of MPNforum magazine –connecting old net friends. Hi Dick, don’t know if you remember me as a rebel, pot stirrer or what from Robert’s old MPDSupport List, but I just had to jump in and say hello and ask you to say “hi” to the others from those simpler, if not gentler, times –at least those who would speak to me. Jeremy, are you able to order similar healthy food in restaurants on the road. I can see a fancy maitre d’ drawing himself up and saying, “It is not on the bill of fare, SIR!” Also Jeremy, thanks for your tips for alternate recipes for flying-food. Sorry about the “frosty coke suggestion”. It was only a 6 oz. bottle and that not often. :) Your facebook crew sure miss you. Word hard, keep well, prosper and slow down soon so to post more often. Arch
Thanks for the comments. I will return to Facebook in early June. I have too much travel right now but hope I can post a few comments on my flights next week. People forget beside the travel I am running a company as well and I manage a sales team. Of course there is my family time and I have make time to exercise. So I have had to cut back a bit on my Facebook time.
Great to hear from you and thank you for catching up. Do you still have the Mazda convertible? I just purchased a new Camaro Convertible and man I love it. I missed having a convertible. I am going to write about my experiences with the car next month.
I have been on Hydrea since 1989 but am thinking of INFN not sure what I will do. left the advertising industry back in 2002. The PV, so far has not impacted my travel or career but if I did not exercise the fatigue comes back. I dropped some pounds it makes a big difference. Great hearing from you. Please stay in touch!
Yes, I still have my fire engine red 1995 Mazda Miata. We go on Miata runs with the Delaware Valley Miata club in NJ, PA, DE, the largest Miata club in the USA. I’m still working, though I choose to now work 4 days a week and am retired on Friday’s. I can’t believe all the travelling that you do. If I see a guy in the aisle of an airplane doing pushups, I’m go to check to see if it is you. I still converse with George of Kansas and Julie.
Take care, Dick
I remember you as a rebel on Robert’s old list. I still keep in contact with several people from that list of many years ago, even though they do not comment on either of the two major lists out there.
I work 4 days a week as an engineer and Project Manager. Though nobody knows that I have PV with a slew of the side effects; gout, peripheral neurapthy, the gum problem, the leg pain, but though I could retire, I’d rather be productive. What’s the option; stay home with the dogs and play with the internet, walk the dogs, work in my garden.
I’m glad that Zhen is starting or rather started this Internet Cloud Magazine. I have been lucky to be working while having PV since 1992 and on HU since 1995. I lucked out with my two Hematologists and hope my health stays steady, whatever that means. Should I recommend my Hematologist to your list?
I too Jeremy used to do alot of flying around selling, yes selling nuclear engineering services east of the Mississippi and staying at hotels near these existing power plants. I guess I was lucky as I travelled Tuesday, Wednesday, and Thursday and was home on the weekend and in the office on Monday and Friday. Sometimes I’d wake up after a late dinner meeting with a client that I had to look at the room desk after getting out of bed in the morning and find out that I was in a Howard Johnson’s in Cleveland.
I don’t do that any more, but work as a Contract PM with a short commute. Shaky hands, foot pain, watching my weight, life goes on.