ET complicates everything

It's me! I'm running the yarn swap table at the Michigan Fiber
Festival. I look pretty good for somebody with cancer who's
running on about three hours of sleep, don't I? Despite
challenges, it was a great time, but ET makes this complicated.

I have REALLY neglected this blog due to a hectic schedule and the fact that ET complicates everything. As an ET patient you have to learn to prioritize and sometimes ditch what's not necessary. I need to prioritize my blog here. Meantime, here are some observations from my summer activities.

As you may recall from previous blog entries, I went to physical therapy this summer for sciatica. The PT really helped--no more sciatica!--and I can sleep through the night now. That's really important because when a common problem like sciatica messes with your sleep it can make you feel run down really fast. That's because you're already fighting fatigue (the Number One complaint of ET patients) from the cancer (and chemo for some of us), and the lack of sleep makes you extra fatigued. Lack of sleep also worsens the brain fog. And lack of sleep for long periods can also be hard on your general wellness. ET complicates everything!

MPN Landmark survey results are in!

Over on our Facebook page awhile back I posted a link to the MPN Foundation's Landmark survey. Many readers of the blog and FB page took that survey, and the results are in.

Please join us on our FB page to discuss. Meantime, some of the interesting tidbits I found:

• More than half (56 percent) of us say our disease affects our quality of life. Not surprisingly, fatigue and headaches are our most reported symptoms.

• There are differences in treatment goals between doctors and patients. For example, 21 percent of us want the progress of our disease to slow. Only 4 percent of doctors set that as a top goal.

• Most doctors (94 percent) said they understand how our disease affects our lives. But fewer of us (74 percent)say that the doctors actually do get it.

• About 56 percent of us have changed our doctors, mostly because we weren't satisfied with our initial care. But once we found the right doctor, we are happy with him or her.

Here's Dr. Ruben Mesa, who took the lead on this study, talking about the findings.

Be well!

Home