So for the past eight years since starting treatment for ET I was in chronic all over skeletal pain also neurological (all from medication as I had NO pain before).
I now have Myelofibrosis and to be honest am over the moon!! Instead of it being a negative it’s like I have a life worth living again. Some discomfort but nothing much. I was also told at Guys hospital London going by my test results I should expect to be alive and kicking in fifteen years. After years of pain and little hope I am happy, grateful and excited. 🥳🌈🎉🍾💕
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StreetPastor
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Keep well, StreetPastor! Happiness is key to good physical, mental and spiritual health. I also have finally learned to enjoy and appreciate my life and those in it as never before, since I got my diagnosis. I do a lot of supplements and clean foods and have been able to strengthen my body in the meantime.
I spoke to you a few months ago and just thought id catch up with you. I wondered if you were out there, somewhere in your motorhome and enjoying your days
How lovely to hear from you. I’m still feeling as if I’ve been given my life back since the M.F. Diagnosis and change of medication. We’ve done a couple of short day trips in our camper but plan on Cornwall, Shell island and the Lake District this year. Hubby and I hope to do a local trip next week as we live in Mid Wales, beautiful area!! Loving seeing all our garden slowly coming to life with snowdrops and Daffodils pushing through the ground. I’ve also started my hairdressing business up again from home and doing more craft activities as it’s not nice enough to garden and enjoy all my plants. Also starting to do some kind of keep fit (although I am allergic to exercise 🤣). How are you doing?
I'm so glad you're well and keeping busy. I too feel well on Jakavi and as i'm now in my 16th year {2003 ET + 2015 MF} I feel I'm pretty lucky and i agree with you Jakavi is doing it's job.
You sound as though you are very busy, I envy your trips off especially to Cornwall, it's my very favourite place. I usually go twice a year with one of my daughters and children - girls only -great fun!
I've spent today helping my husband knock down a wall in the garden and preparing for the builders tomorrow - that's my exercise done (i too am allergic to exercise!) I have a fitbit and aim to do at least 6000 steps a day - it helps
I would love to keep in touch, am i allowed to give you my email, or is there a way we can message through this site?
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Hello, new member
I'm new here. All red blood levels are elevated. I've one mutation for Hemochromatoses. JAK negative. Migraines with visual loss are worse.
Newly Diagnosed Polycythemia. Confused and nervous! Looking for advice!
Is this normal for platelets to increase so quickly ?
