A myMPNteam Member
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.
My husband has read so many articles on PM that he could write a book. I am so thankful everyday for him. His family is also a big support as we have always been close. I thank them all often and hugs are my big thing anyway so it is not hard to get and give hugs. I express my gratitude in public whenever appropriate. My big concern is that I cannot think of words. John thinks I get confused, but I think it’s him. Ha!! This week has been very rough as my only sibling (Patricia) died suddenly Saturday the 26th. She was not healthy but still this was a shock. My husband and I are having to make all the arrangements and clean her apt out by end of December. She was almost totally blind, I took her to her many doc appt. Without my husband and his family, I would be lost. So hugs , kisses, and public acknowledgement abound. I wish that everyone could have the kind of in-laws, and husband that I have. I am not getting the sleep I should get these last few days. Wake up and think of Patricia and cannot go back to sleep. I hope 3:30 does not become the norm. God Bless you all.
I also take Alluperinol for my gout. I was told Gout is one of the side effects of MPN. stay strong.
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.
It takes a village your very fortunate to have such a support group
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.
Just tell them “thank you”. Even better—thank them publicly through FB, surveys if medical folks, in groups of friends, etc.