I do not try to take my mind off the MPN. Trying not to think about something is a sure way to perseverate about it. I focus on dealing with the MPN proactively and letting go of worry about things I can't control. Engaging in activities that give life purpose and finding ways to have fun every day is a key coping strategy. This is my list of coping strategies.

1. Support from my family, friends, and faith community.
2. The MPN forums (my friends and MPN Family)
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things that are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s). Knowledge is power.
8. Create a high-quality treatment team who you trust.
9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.

Resilience is as much a choice as it is a set of skills. I live a good life while managing PV and other conditions that include Neurofibromatosis Type 1 (caused a brain tumor/resection), history of Afib and tachycardia (fixed by surgery), and various other "interesting health learning opportunities."

Wishing you all the best.

I am a crafty person so I find joy doing that. I’m currently trying different crochet stitches then practicing on cotton to make dishcloths/washcloths. I’ve already warned people they may get a weird little cloth at Christmas 😉 I also want to do some quilting. That’s a bit more ambitious but I’ll get back into it.

Watercolors, puzzles, taking the dogs for a beach walk, meeting up with friends for a drink.

Being around children brightens my day! They are full of Joy and Love! Also adults who appreciate everything you do for them from the bottom of their hearts and don’t take life for granted!! Most of all laughter makes me happy! ❤️

Lighthearted joke I read about MPNs:
One of my besties knows about my diagnosis and when we go for bike rides and I’m faster than her, she says, “no fair, you have extra blood!” 🤣 She wanted to know what athletic event we have for MPN research, like the MS Bike Rides or the Susan B Komen Race For The Cure. I told her that we do have a fundraising race but the disease is so rare only 5 people show up 🤓

Yeah sometimes you just gotta laugh at the cards life deals you ☺️

@A myMPNteam Member You go, girl!

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A myMPNte...