I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. I also have another kinase-based disorder - Neurofibromatosis type 1 that complicates things a bit. The NF1 lead to a brain tumor that I had to have resected back in June 2019. A year before that, I had to have a heart surgery for tachycardia (catheter ablation). I had two other surgeries between 2018 and 2020 as well. It has been a rather interesting time of my life! Managing the MPN in the context of all the other stuff has been a real learning experience.

So how to cope? I think we all find our own ways. Here is what works for me.

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.

I have been blessed to have a relatively indolent form of a MPN. I have lead a long rich life and plan to continue to do so despite what happens with the MPN. Sure - there have been some challenges with the ET-PV and the other related and unrelated medical issues I face. Sometimes you do, as the military folks say, have to "Embrace the Suck" or just "Suck It Up Buttercup." However - it is not all "Suck." There is plenty of good in life to enjoy and embrace. As the prayer says, I seek the serenity to accept what I cannot change, courage to change what I can, and wisdom to know the difference.

I have great hope with my treatment with Besremi. I am maintaining a complete hematologic response. In the 18 months I have been on the interferons, my allele burden has reduced from 38% to 9%. I may achieve a complete molecular remission. There are ever-more treatment options and very real hope for MPN treatment improving in the foreseeable future.

More than anything else at this point, know that you can manage this. Have confidence that you will be one of many who do manage the MPN successfully.

Sounds like you’ve said it like it is like for most of us older members. A while ago when we shared a little, you said you like to work in the yard. I’m much the same but am always frustrated because I can’t be digging up flower beds like I used to. My son orders me not to be even trying to plant something new in the ground in his fear that I will pop another back vertebra, so I do the planning and then point out to him where to plant it. However, he is a busy working engineer, has a lady friend, and therefore has limited time to accommodate all of my honey-do’s. Flower gardening and maintaining and watching my three hummingbird feeders occupy a lot of my time, and I also enjoy “🤣virtiual traveling” via YouTube. I go all around the world watching Rick Steves’ travel videos. Laughing!

I'm retired, retired in 2014. I was shocked when I went for my yearly physical and was told I had ET. I used to be a perfectionist, but now I try not to be one. My house is not as clean as it used to be but it's not dirty, just things kind of messy. There are days that I'm very tired and on those days I just take it easy. Sometimes I feel like my brain is a bit foggy. But, I really do feel good most of the time. It's so good to have other people that I can talk with and share my fears and anxieties.

I have been living with ET for about 6 mth now. It has been quite the journey from I’m dying to I’m just going to be sick for the rest of my life to I’m going to live day by day. Of course the latter is the best though when I’m stuck in bed because I just can’t manage to walk and my toes are on fire I go back to the first version. I have however found a good doc finally so keeping my positive vibes he will help me on a good road. I don’t stress over cleaning - it’s overrated 🙄. I do keep a clean house but don’t sweat it like I used to.

Steve, you should be the MPN role model of SERENDIPITY!! Thank you so much for these powerful suggestions that perfectly describe what I was hoping to have delineated for the group in a nutshell. I had read your story when I first joined, and now I can see that God wasn’t ready for you to go home—you still had a lot of yourself to share. A thank you from all of us is warranted.