I was quite sick starting in 2020 for over two years. I had Lyme disease plus ET but wasn't aware of what was wrong right away. I had the perfect storm going on inside me and I was scared! During this time, I really struggled to walk, I had so much pressure in my head. So I relied on people. Lots of people for rides to appointments. I gave gift cards for gas, hugs. Lots of hugs, yes during a pandemic. I needed the reassurance I would be okay. I cried on their shoulders. I told them how much their friendship meant to me. I was vocal and grateful. Today I am doing really well. No more Lyme thanks to hyperthermia treatments in Aug 2020 and in early 2022 I was finally diagnosed with ET, and I am thrilled to say now ET micro vascular issues are under control! My friends and family know they were a great support in my healing journey because they truly were the ones that were there when I needed them most. You really need the support of a village, not only your spouse - they are struggling too with worry for you - to get through the hard times.

I also take Alluperinol for my gout. I was told Gout is one of the side effects of MPN. stay strong.

My family doesn't support me, my husband passed away January 12, 2022, and I also have CKD stage 3, never even suspected that I had it and lost right kidney. No one would ever suspect that I have anything wrong with me

No family, pretty much scared friends away. Cope on my own.

I struggled to walk for a good part of 2022, kept getting swollen feet. Was prescribed steroids to counter the inflammation twice recently. Also taking a low dose of allipurinol, now. Figured out I have to walk and stay well hydrated, otherwise, I will get swollen feet. I think PV leads to gout.