Samantha

I was diagnosed with an MPN just after the delivery of my son and while first starting my career as a lawyer.  Sixteen years have passed.  I’ve been to countless office visits and have given an unfathomable amount of blood tube-by-tube and bag-by-bag.  Like many MPN patients, I found symptoms of the disease were at times debilitating.  Attacks of pruritus left me crying and clawing my skin before I gave up showering altogether.  Bouts of fatigue rendered me immobile for days at a time when I could not afford to stop working.  Worrying about progression made me question everything I was doing and every drug treatment available.

This whole time—life kept going on.  Nothing stopped because of my MPN.  Meals still needed to hit the table; floors still needed to be swept.  My legal clients continued to need my help; my law partners still relied upon me to support our partnership.  And my son (suddenly) turned 16.

Throughout this time, I felt the need to push forward—hard—giving everyone everything I could to keep my family happy and my career going, even at the expense of my own health.  I struggle with the same feelings of inadequacy of other working parents, just compounded by my health issues.   I felt guilty if I took a nap in the afternoon instead of making dinner.  I traveled for work even when I was exhausted and ended up catching every cold and flu strain carried by airport strangers.  I gave and gave and gave until I had nothing left.  That’s when my MPN symptoms would swallow me whole.  I’d fight my way back only for the cycle to repeat again.

Then I realized that my impossibly full life had melted into a struggle just to get out of bed every day.  I was in my 30s and felt like I was 80 and incurably sick.  I needed to do something different.  I couldn’t control my MPN, but I could be healthier.  After all, I told myself:

If I am healthier, I will live longer (or at least improve my odds!).

If I am healthier, I can better support my family.

If I am healthier, I can work more efficiently.

Samantha

And most importantly for me, taking the time to be healthy is not selfish.

So I set about researching on ways to become healthier.  This blog post summarizes how I try to live my life in recognition of my disease, neither ignoring it nor hyper-fixating on symptoms.  I am by no means perfectly achieving everything on this list.   I am, however, happier and healthier than I’ve been in a decade.

  1.      Fatigue eats your soul so fight it with exercise.

Fatigue for me feels like weights have been added to my shoulders like a yoke carried by oxen, crumpling my body in half until I just cannot possibly take another step.  In the past, I would do my best to push through fatigue with caffeine and an iron will until I collapsed.  After reading research articles on the positive impact of exercise on fatigue, I thought I’d give it a try.

I started by walking around my house for 10 minutes, then walking around the block, then walking a mile, then longer.  I tried running but, eh, that was a misery I couldn’t push through.  I then started an at-home exercise program 30-minutes a day, three days a week, alternating with walking in the off days.  Once I felt stronger, I joined a local gym for group exercise classes every weekday morning.

And slowly, the weights lifted from my yoke until I could stand straight and face a full day.  It’s an amazing feeling.  A regular exercise program required changes, however, to my regular life.  I no longer get up early just to make everyone coffee or drive anyone to school or work.  I refuse to schedule conferences calls before 9am.  I am protective over my exercise schedule.  Because of that, I am better able to complete my day (though sometimes with a wee nap in the afternoon) and give more overall to my family and work life.

  1.      Pruritus is miserable so treat it seriously even though it sounds like a made-up thing.

Pruritus, for me, comes and goes.  There were years that I never felt so much as a tingle after being exposed to water.  Then there were times that I imagined flaying off my own skin (a la Ramsey Bolton) while in the grips of a severe attack.  I tried various bathing/shower combinations, water temperatures, soaps/lotions, histamine blockers, anxiety drugs, and any other patient-forum suggestion out there.  Frankly, nothing worked. 

Eventually, I agreed to participate in a clinical trial for a JAK2 inhibitor.  Participating in a clinical trial is a personal decision that should be made in concert with your family and physician.  For me, the drug almost immediately stopped the pruritus.  I took a shower for the first time in a year and cried like a baby.  Even now that I’m not longer taking the drug, my episodes of pruritus are few and far between.

I still treat the potential of pruritus seriously.  I try not to wait until the last minute before an event to shower—I build in time to manage an attack in case it happens.  I end each shower with cooler water.  I apply lotion almost immediately after the shower.  These steps accomplish two things for me.  First, maybe they help minimize pruritus (even if just in my mind).  Second, I am taking control over it.  Following a plan makes me feel better.

Know too that there’s no real reason to shower every day.  It’s often just a habit.  I’m a firm believer in the use of body wipes for critical areas, face wipes for the removal of make-up and asking my hairdresser for a wash and blow-dry to take care of my hair.

  1.      Your body is struggling so give it good food.

veggiesMy bone marrow is working too hard, and someday (hopefully in the far future) it will be forced by fibrosis to slow down.  In effect, it’s broken and my body is working to compensate.  When I feed it junk food, processed food, foods laden with sugar and fat, my body has to work double-time to break it down into useable components.  Why burden my body like that when it’s already trying to keep me alive?

I made the shift years ago to a mostly plant-based diet.  That means that I eat a lot of vegetables, side servings of whole grains, a limited amount of dairy and occasional bites of animal protein.  Eating well doesn’t happen overnight.  It takes dedication to research the right program—the Mediterranean Diet, a no-refined sugar plan, vegetarian/vegan, etc.—try them all and find a good fit.  Then plan meals in advance to avoid making bad choices when good food isn’t available.  I set aside time on the weekends to prepare five recipes that give me 10 meals for the week.  If I don’t have time to batch cook, then I at least make sure I have the components available at home for healthy meals that I can throw together quickly at any time.

Eating well makes me feel better physically.  I have more energy with less bouts of fatigue.  Plus, treating my body well makes me feel better mentally because it means I am an active participant in my health care.

samanthaI have no control over my MPN.  But I do have control over my diet, my exercise and my lifestyle—and I choose to live well.  It only sounds crazy until you try it.  

Living well,

Samantha Trahan