It's been a while since I've had time to post on this blog.
I started seeing a new Hem/Onco doctor, I like him much better than my last doctor. I don't feel dismissed when I have questions, I feel like I get more than my fifteen minutes worth so to speak.
I am still on Hydroxyurea (HU), 2500mg a day (5 pills each day), although at my last appointment he said I could try to take 4 pills a day twice a week. I also take two baby aspirin everyday to keep my thick blood from clotting.
The HU still makes me very tired but so do the five kids. I have learned to deal with exhaustion, I try to take walks and find ways to relax. Taking time for yourself is key to managing the exhaustion. Even if it's just a long hot bath and a cup of tea, it really helps.
I am no longer taking Aggrenox (blood thinner med), just the baby aspirin. I still experience some pins and needle sensations from time to time, especially in my hands, arms and the top of my head. My new doctor seems to think it's a side effect of the HU meds.
Every week is different. I am past the freaking out stage now that I am 2 years into dealing with the Essential Thrombocythemia (ET). I have become more aware that the meds are just a part of my life now. It use to really freak me out that in my thirties I have to take so many pills every day. My pills are just a part of my nightly routine now.
My every two month doctors appointment and every month blood draws are the times when it really hits me that I have a lifelong disease. The hardest part is just worrying about the future and what is going to happen with our health care system. I think about how much these meds cost and it's scary.
Today, I am feeling okay, my platelet numbers were 450,000 at my last appointment and that is the lowest they have ever been since I was diagnosed in January of 2011 with ET.
I hope that all your good days out number your bad days.
Take Care - Shayna
