MPN Facebook Group Leader, Patient Advocate Spotlight

Tips on Living with MPN – Reflections on 2020

by Christine Kennedy

As the New Year is under way, its a time of reflection.

MPN are an evolving disease.  The difference in the years of running MPN groups has shown in what were arguments into basic knowledge of diagnoses.

The arguments of diagnoses have settled down.  The infamous Bone Marrow Biopsy (BMB).  It’s needed, yet most feared assessment of your path, your lifespan.  There are hundreds of things we can all think of that are worse including those with cancers that have to sit down and tell their families that lifespan is short.  Make sure your have a bone marrow biopsy.  Science of MPN says so.  This argument is over.

The Importance of Diet and Exercise

physical health for MPN patientsAlways a catch 22.  You need to bring your risk factors down to as low as you can, diet and exercise are the best way.  Does everyone do it?  Nope, its easier not to.  Who really wants to go through the effort of CHANGE?  NO one, no MPN or not.  It’s easier to say exercise is impossible.  It will hurt more.  My body can’t do it.  Yet science doesn’t back that up.  You can’t expect to just jump into fitness.  It’s a path.  Every cancer is now getting exercise in some sort of shape as there are 100’s of forms of exercise.  There are 100’s of ways to modify exercises including just sitting.  Exercise is now part of Dr. Mesa’s team studies; diets are being studied.  It’s shown to help, helps your body, it brings your risks down, and helps mentally and it battles fatigue.  This is a known fact.

Science is changing, MPNs are known to have inflammation as a driver.  Diet comes into play there.  Get your C-Reactive protein check.  So if your not going to exercise for whatever reason, then diet is your focus.  There isn’t an excuse for that.  We can control what we eat.

Be Your Own Advocate – See an MPN Specialist

see an MPN specialist, PV ReporterFind the best doctor, yes I know for some you automatically say, I can’t travel.  No one is asking you to.  However, finding an approachable doctor who will listen is the key.  My local knows nothing on MPNs.  I printed out a full article on my thoughts on MPNs and handed it to her.  I also said right away what my therapy choices will be after “watch and wait” changes.  My interview with my doctor was over.  She works for me.  She answers my questions.  She either gives me my allotted time or I search for a new oneBeing an advocate takes patience, work, understanding and a set to do so.  It’s not easy to stick up for one’s self.  It’s a life lesson.  We will move the mountain for our kids or spouse and yet become your own MPN advocatewe can take a back seat very easily.

Online videos, scientific journal websites are all there.  I get that it’s easier for us just to post it and learn in tidbits of the disease.  There are some Facebook pages that are dedicated to the science or none at all.  That is going to be for a select few as understanding is very in depth so science sites are scary.  But some people hold on to researching.  Some people hold on to the CAUSE.  That is just part of the acceptance of your disease.  If the cause was known, then it would be said.  If it’s not said by the MPN experts then please don’t think googling can figure it out and arguing about it as well is just wasting time.  I get that the cause is important, but cancers in general, except for a few, just happens.  Why will come with the cure.  This is a where you are on your path.  Don’t get stuck in finding out why.  Figure out the FUTURE.  That is the difference in symptoms and issues, diagnoses and your future path.

Disconnect from your MPN

Disconnect from ET (essential thrombocythemia) is your biggest weapon.  Learn to do so.  ET is in your face daily.  EVERYONE has struggles.  EVERYONE complains on how tired they are, it’s the world we live in.  Mindset is your best weapon.  You don’t need to tell everyone you have CANCER or take chemo.  Keep it in check.  You don’t need to prove your disease with those words.  Cancer is a powerful, inundating word.  Accept the word but don’t live it.  Not all those with ET will ever be on Chemo so there is that as well.  Our paths are different, symptoms run the gamut, mental toughness is hard, understanding by those around us can hurt us.  Life is tough.  Use ACT therapy to help you.  Don’t get stuck as an ET patient.  Be a person first who happens to have ET.

On this Facebook page (Essential Thrombocythemia Support Group) we will continue to give you the science and education.  But we will also say the tidbits to help you figure it out – point you in the right direction and advocate for you.  I do believe that within our own community there is a disconnect.  It’s all out there but its every man for himself attitude.  I am surprised that foundations and information sites never really reach out to us unless the are trying to promote themselves otherwise there is no use for us.  It’s sad really.  I am going to take the bull by the horn and make a few myth buster pages.  We have only one advocate that makes themselves available and that is PV Reporter – Dave (Wallace).

My best advice is, live your life.  ET sucks, but it’s a hand that is dealt and you need to do everything you can for yourself.  Who really wants to exercise, diet and advocate.  NO ONE.  It’s the hand that is dealt and you need to do so as it is the difference in lifespan, your happiness.  Your family.

Will this post piss off people, yes.  And for that, I am sorry.  For the rest that takes anything from this, I hope one thing resonates is you are NOT ET and it doesn’t define you.  Your self-worth is so much more.

Resilience-is a noun, the capacity to recover quickly from difficulties, Toughness.

Note:  Christine Kennedy is an MPN patient advocate and Facebook leader of (2) groups – Essential Thrombocythemia Support Group and Polycythemia Vera PV Supportive Friends.


 

About David Wallace

Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward - "educating the patient is essential, so the patient can guide their physician to meet his or her needs." PV Reporter is a comprehensive resource hub giving visitors vital tools to become "empowered patients."

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