It's been a really long time since I updated my blog. It's been a busy time for our family.
Essential Thrombocythemia Update: At my doctor visit two months ago, my platelet counts went down to around 500,000 so the doctor said I could reduce my Hydrea dose from 5 pills/2,500 mg to 4 pills/2,000 mg every day. It was not a big reduction but I was excited. The break didn't last long, at my next months doctor appointment my numbers went back up to 650,000! UGH! So my dose was put back to 5 pills/2,500 mg of Hydrea everyday and two baby aspirins everyday (it really helps with the pins and needles I experience from the E.T.)!
Overall, I am okay, my main side effects are fatigue and paresthesia (pins and needles). Most of the time I don't even think about my illness. It only hits me when I take my medications at night and at my monthly doctor appointments. It really never gets any easier being stuck with a needle.
Next week we are taking a family vacation to Hilton Head, South Carolina. We are all very excited to have some quality family time! We're meeting up with my husband's side of the family for a family reunion. The kids are very excited to see everyone. Packing everyone and driving for many, many, many hours with five kids, my husband and I are not so excited about but it will be well worth it.
The kids are keeping us busy, we are gearing up for a new school year in a couple of weeks. We will have a high school student, middle school student, two elementary school students, and a Pre-K student at three different schools! Also, I am going back to college in the fall, it's been a long time but I am very excited to further my education. It will be a busy year but I really will try to do a better job at keeping up with this blog.
The best thing about my blog, is that while I wish E.T. on no one, I am grateful to feel not so alone with my illness.
Thank you for reading and I hope everyone is doing well.
Take Care -
Shayna
March 8, 2013
E.T. New Doctor - Be Your Own Advocate
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
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