International MPN News, Science & Opinion

MPN Life: Resolutions for the MF Patient

MPN LIFE: NEW YEARS RESOLUTIONS FOR THE MF PATIENT

– by Jeremy Smith

Welcome to the New Year. The resolution season is now upon us.resolution The making of New Year resolutions can be traced back more than 4,000 years to ancient Babylon.  The Babylonians marked the first new moon following the vernal equinox—the day in late March with an equal amount of sunlight and darkness—as the start of a New Year. They would often pray and make commitments (Resolutions) to changing their lives.

For every human being who calls Earth his or her home a wide variety of things happen to us and impact us over a full 365-day year. There are the ups that nourish our hearts and the downs that have the potential to drain our minds. In the worse situations this can lead to exhaustion. How we choose to deal with these shifts is critical to our quality of life and long-term health.

For MF patients the start of a New Year and New Year’s resolution season presents a unique opportunity to reset our minds and refresh our souls, something vital to all MPN patients. The New Year is an excellent time for all of us not to reflect on the past year necessarily but more importantly to create the type of year we actually would like to live in. To set forth on a new journey that allows us to shed our fears and baggage that have been dragging us down for far too long. There is no way for any of us with MF to change our diagnosis but we can influence our quality of life. Instead of being trapped in a negative mindset and succumbing to the negative by using our power to influence what we actually do control, we can dramatically improve our quality of life.

 NEW YEARS RESOLUTION #1: EXERCISE

The diagnosis of any MPN is life altering, but the diagnosis of Myelofibrosis can be especially scary.  Quite often this diagnosis prevents us from seeing anything positive that is inside of us or around us. People often choose to shut down or remove themselves from what had been their daily routines. All of this can contribute by adding fuel to fatigue and a once positive person can become dangerously negative.

There is nothing more powerful you can do to improve your health, mind and quality of life than exercise. A study by scientists at Lund University in Sweden found that exercise induces genome-wide changes in DNA methylation in human adipose tissue, potentially affecting adipocyte metabolism. The genes, however, have ‘methyl groups’ attached which affect what is known as ‘gene expression’ – whether the genes are activated or deactivated. The methyl groups can be influenced in various ways, through exercise, diet and lifestyle, in a process known as ‘DNA methylation’. If you would like to read more about DNA methylation please check out another article:

Another study published in the Archives of Internal Medicine in 1999, divided 156 men and women with depression into three groups. One group took part in an aerobic exercise program, another took the SSRI sertraline (Zoloft), and a third did both. At the 16-week mark, depression had eased in all three groups. About 60%–70% of the people in all three groups could no longer be classed as having major depression. In fact, group scores on two rating scales of depression were essentially the same. I have been on INFN for fifteen months and have not had a single bout with depression. I have been exercising most of the fifteen months so that could be one reason I have had no issues. 

 An important note about exercising is some new studies are demonstrating the need to increase the intensity of cardiovascular workouts over time. The problem is our bodies, especially the heart, adjust to our increases in exercise and you have to continually raise the intensity in order to maximize the results. Walking twenty minutes a day is better than watching TV for twenty minutes a day but your body really requires an hour a day to rid your body of fatigue consistently.

 Other benefits to intense cardiovascular activity include the release of several key hormones, including serotonin, which is an enormous mood changer and dopamine, which helps with learning and the ability to focus your mind. Maybe it can help clear out that pesky MPN brain fog some patients experience. And norepinephrine, which influences attention, motivation and arousal. This exercise-induced chemical combination has a commanding impact. “By elevating neurotransmitters in the brain, it helps us focus, feel better, and release tension,” says John J. Ratey, Ph.D., a clinical associate professor of psychiatry at Harvard Medical School.

NEW YEARS RESOLUTION #2: RECALIBRATING THE MIND

Recalibrating the mind involves a process of driving out the overwhelmingly negative mindset that can develop in patients that are overwhelmed by the diagnosis, constant visits to the Doctors, fatigue, battles with the insurance companies, clinical trials and possible side effects from various pharmaceutical solutions. The loneliness of dealing with a disease that has no cure can wear on your mind as well.

One of the tools I use as part of my process for recalibrating my mind is daily meditation, which helps anyone relax and refocus. I had never meditated previously but started to in 2013 and it has had a very positive impact on my life. I downloaded the iPhone APP Pranayama created by Saagra. It’s helped me lower my blood pressure and relax through the deep breathing exercises contained in the APP. I always have the APP on my iPhone and use it prior to all of my Doctor appointments

Recalibrating your mind can lead to a more positive outlook on life, which will improve your quality of life. It also can help with the fixation people have on their test results. I have always believed that a constant fixation on lab tests is an unhealthy activity that can lead to depression and uncertainty. It also can become a sneaky way for negative messages to embed themselves deep inside the mind often dominating your thoughts. It’s not easy to recalibrate your mind but it’s not impossible if you’re committed to changing how your mind currently works.

Researchers at University of Pittsburgh looked at rates of death and chronic health conditions among participants of the Women’s Health Initiative study, which has followed more than 100,000 women ages 50 and over since 1994. “We don’t know exactly why, but attitude does appear to matter when it comes to heart disease and health,” University of Pittsburgh Medical Center internist Hilary A. Tindle, MD, MPH tells WebMD. The study concluded that pessimists were more likely than optimists to have diabetes, high blood pressure, high cholesterol, and suffer from depression. They were also more likely to be overweight, smoke, avoid exercise and succumb to earlier deaths than optimists.

 But can someone who is pessimistic by nature change their thoughts to improve their health? The good news according to Psychiatrist Redford Williams, MD, who directs Duke University Medical Center’s Behavioral Medicine Research Center, yes you can.

Besides the previously mentioned meditation therapy I use there are other things you can do to improve your mental state. Prior to going to bed each night reflect on some good things that happened to you during your day. Listen to music, especially songs that are attached to happy life memories. Think about some of the positive accomplishments you’ve had with your disease and focus less on things that did not work. Lastly if I am down I will watch a humorous movie or play with our dogs, which helps lift me out of any funk I might be in.

NEW YEARS RESOLUTION #3: DIET

Old habits are hard to break but what you eat has an impact on your health. You maybe familiar with the technology industry term “ garbage in garbage out.” This term is especially true when it comes to what we put in to our bodies in the form of food. The wrong food choices combined with an MPN can directly impact us from poor glycemic levels to high blood pressure. All of which lead to increased inflammation and cholesterol issues both too high and too low.

Many researchers believe that these problems are partly related to diet. While they used to believe that diseases-such as type II diabetes, obesity, heart disease, stroke, and certain cancers – were caused by a single gene mutation, they are now generally attributing these conditions to a network of biological dysfunction. And the food we eat is an important factor in that dysfunction, in part because our diets lack the necessary balance of nutrients (Proceedings of the Nutrition Society, 2004).  http://www.nutritionsociety.org

Foods that are high in saturated fat include: Butter, lard and cream,whole milk, cakes, pastries and chocolates, potato chips, cheese and fatty meats

When you consider that MPN’s put a high level of stress on the heart and blood vessels. what you put in to your body truly has a greater impact than on us then the general population.. With fatigue being the number one complaint of all MPN Patients this should be a call to action as high fat sugar diets impact your weight, adds fat to your body and drives up your bad cholesterol, LDL while lowering your good cholesterol HDL.  It drives your glycemic level higher and is not healthy for an MPN patient.According to WebMD balanced diets helps keep your blood sugar in a normal range and prevents that sluggish feeling (fatigue) when your blood sugar drops. Eating the wrong foods can also be a problem. Eating a balanced diet helps keep your blood sugar in a normal range and prevents that sluggish feeling when your blood sugar drops.

Always eat breakfast and try to include protein and complex carbs in every meal. For example, eat eggs with whole-grain toast. Eliminate all bread products that contain enriched wheat or high amounts of sugar. Also eat healthy meals and snacks throughout the day for sustained energy.

My Hematologists were concerned I was gong to lose weight when I was diagnosed with MF.  My Cardiologist was worried I would start putting on weight because my Hematologists were putting pressure on me to gain weight. In the end everyone is happy today because I have maintained the same weight now for more than eighteen straight months.In addition I have raised my HDL 28% and reduced my LDL by 35%. All of this was done with a combination of exercise and diet changes that allowed for a healthier more consistent nutritional program.

This has led to another benefit, which is the rise in my metabolism. I now eat six to eight times a day and my metabolism drives me to a very healthy appetite. I actually eat more today than I did five years ago but by choosing the right things to eat I am able to keep my weight where it needs to be.I have introduced more raw foods in to my diet. Foods like ,cabbage, cauliflower and brussel spouts. Most of these foods can also be made in to hearty soups, which are especially good during the wintertime. Plus they pack the right nutrients to help improve the health of your immune system.  I have moved a way from high calorie traditional pastas and have been consuming a lot more Faro and Quinoa.

Red meats, a long time staple of my diet has been replaced by Organic Chicken and Fish. That’s not to say I don’t eat red meat but instead of high fat hormone injected red meat I have switched to hormone free beef. And I limit it to two to three times a month. Usually I will have lamb instead of a big juicy steak.

As some of you know from ready my past articles I am a big believer in fruit and vegetable juicing along with vegan brown rice protein powder and Greek yogurt. However you always have to watch the sugar levels with fruit juices so I have cut back on some of the fruit.

NEW YEARS RESOLUTION #4: LIVE YOUR LIFE!

Live your Life! Is a very simple reminder that no matter what your diagnosis its vital you get back to doing what you love in life. Putting a stake in the ground and declaring that you will not allow your MPN to dictate how you will live the rest of your life is vital to creating the life you want.

When you become hyper focused on your lab numbers your numbers take over your mind and thoughts. You lose sight of the fact we are more than our numbers. Check in with yourself right now. Are you living the life of the lab rat or really living your life as you should. I understand for some of you it’s not possible to live your life as full as you may want it right now. This does not mean it has to stay this way. Start small and find something very simple you enjoy doing and do it. Maybe for you it’s getting back to writing or photography.

As many of you know for me cycling is an important activity in my life. When my spleen became enlarged I was concerned that would be the end of my cycling days. MF is very different than PV but I chose not to believe that something I so loved would be forever gone from my life.  By working with my entire team of Doctors I have overcome the early issues and will begin serious cycling training again this month. I have had to make adjustments in my training and if everything goes well I should be ready to take on larger rides by the springtime.  Its very possible I will not be able to ride back-to-back forty miles rides but that does not change the fact I will be able to cycle again.  Its all how you see things.

Another area for me I needed to deal with was disconnecting from technology. It was taking too much of my time and draining me. Between emails Facebook and Google Plus I was always on my phone responding to emails. Now I have more time for exercise and going to dinner with friends I had not seen in a long time. I actually wrote a letter to a friend for the first time in more than a decade. And it also allowed me to have the time to write this article. J

LOOKING FORWARD

None of us know how much time we have left or where our MPN diagnoses will take us. As I begin my twenty-fifth year of living with an MPN I have developed many techniques and practices to improve the quality of my life and in doing so, hopefully continue my living.  By starting off the New Year with a fresh outlook on life may very well have a profound impact on how you feel at this very moment and for many years to come.

As I have said previously even if there was a cure for all of us we are still going to have face death. So at some point I think it makes a lot of sense to get back to taking charge of your life and to get as focused on what you love to do in life and as Nike says Just do it! It’s very hard work of course and you have to be committed to this but I believe we all have the power within to make changes in our lives for the better.

Take me back to the Contents

© Jeremy Smith and MPNforum.com, 2014. Unauthorized use and/or duplication of this material without express and written permission is prohibited. Excerpts and links may be used, provided that full and clear credit is given to MPNforum.com with appropriate and specific direction to the original content.

p>

Comments on: "MPN Life: Resolutions for the MF Patient" (5)

  1. Sheridan Emery [PV'd in CA] said:

    WOW! So much good information – even for the PV – and all MPN patients. THANK YOU, Jeremy. Its never too late to “resolve” to do all we can to be healthy and free of the depression that does accompany knowing we have something inside, slowly trying to destroy us and the medications we take with their often ever-present side affects. And yes, all the labs and doctor visits and the in-between therapies, but all are completely necessary and inescapable, so we might as well — get on with it! And BE HAPPY! So glad you came back to our corner of the world. You, and your encouragement were missed. Didn’t seem like “home” w/o you here. As Margaret shared – MOTIVATING!

    This is the year I began HU and now major pain meds, and the depression did try to take over, but I’m not going to allow that to happen. Its been a hard – and dreaded adjustment and when people ask, “how long will you be on these meds?” I cringe, but with this article and your optimism, I’m going forward. If you are still going to DVOC – it would be wonderful to share this there also and perhaps on their website or even as a handout for all cancer patients. Such good stuff, Jeremy! Thank you, again!

    • jsandresen1 said:

      I am ok with you using at the clinic or anywhere else. Just let me know. I would like to talk with you sometime about INFN.

  2. Kathy Van Meter said:

    We miss so much when we don’t stay present tin the moment and there are so many moments in our lives. Peace…………….

  3. Rochelle Moore said:

    A very good article with excellent overall health advice! Thank-you, Jeremy. My favorite quotes: “even if there was a cure for all…we are still going to have face death. So at some point I think it makes a lot of sense…to tak[e] charge of your life” and “us[e] our power to influence what we actually do control”.

  4. Margaret Sims said:

    Great article, Jeremy! Substantial , informative, and , for me, motivating. Thanks.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: