Keeping up with our other health needs while living with myelofibrosis
We need to be the keeper of our comprehensive health and well-being
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I am incredibly fortunate when it comes to my health. I say that, even though people in my life would respond with a shocked emoji.
Yes, I have lived with essential thrombocythemia, polycythemia vera, and now myelofibrosis (MF) for 30-plus years. Yes, I have experienced long periods of troublesome, misunderstood symptoms, life-threatening clots and hemorrhage, extreme fatigue that interrupted some of life’s most memorable moments, and chronic pain.
But as my specialists kept their eyes on my blood work, on phlebotomies, then on drugs to manage my MF, it was on me to remember that the rest of my body had its own needs for attention.
A comprehensive approach
Cardiovascular disease runs in my family. Having a myeloproliferative neoplasm (MPN) such as MF puts us at additional risk for heart attack and stroke. Keeping our blood flowing smoothly and clotting adequately, but not excessively, is a perpetual project.
A regular screening caught my early colon cancer.
The arthritis that runs in my family has unkindly contributed to disk degeneration up and down my spine and a hip that will need replacement at some point in the not too distant future.
What does all of this have to do with MF?
We still have a body full of other, unrelated mechanisms, risks, and conditions. And we need to be the keeper of our comprehensive health and well-being.
If I hadn’t had a colon cancer screening, I might have needed more aggressive treatment once it was diagnosed.
If I didn’t see a cardiologist and pop my anticoagulants and daily statin (which I resisted for years), I might be more likely to suffer the same heart attack and stroke as my beloved father and mother, respectively.
If I had continued to ignore my arthritis pain as “a part of life” that I simply had to push through, I wouldn’t be in physical therapy now to build my strength and pretrain my muscles for whatever surgery and rehab comes next, not to mention reducing the risk of a fall because of my weakened hip and back.
What’s funny is I rarely talk about my own health. In social gatherings, whether with family or friends, I’m known for my five-minute rule. When someone starts talking about what ails them, I put up five fingers to represent an invisible five-minute timer. Not because I’m disinterested. On the contrary, I care deeply. But when we have the privilege of time to enjoy ourselves, to catch up with loved ones and those we cherish, I want to laugh and smile and enjoy every minute. Health talks are for other times.
But here, in this column, I feel free to let my guard down a bit — to draw on my own experiences to help others navigate their personal health journey.
My goal: empower others to take as much control as possible over their quality of life. And part of that is reminding those with MF and our care partners that we are not only people with MF. We are people with hearts and lungs, bones and joints, digestive tracts and suspicious skin growths that all need looking after.
So, while your health time may be mostly focused on MF, remember to keep up with other cancer screenings and your overall healthcare. Then thank yourself. Because how I see it, feeling well enough to make the best of everything possible is why we’re still here.
Note: Myelofibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myelofibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myelofibrosis.
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