Mourning Our Losses

After I was diagnosed with myelofibrosis I was blessed to find a support group on Facebook that is very well managed and full of caring people with experience in my disease. Some are patients, others are family members and caregivers. The group encouraged me and helped me get educated about MPNs in general and myelofibrosis in particular.

Being a part of my support group is one of the best things that has happened to me with respect to having myelofibrosis. The people in the group and I have a special bond - our disease. We care for each other, share with each other and encourage each other.

The downside is the constant reminders that myelofibrosis is a fatal disease.  Over time we lose friends to death. We struggle with every loss.  It is always difficult.

The Common Cold

I have a cold. Just a common cold. My sinuses hurt. My nose runs. My head aches. My voice is scratchy and I cough. It is just a cold. No fun, but not much of a threat.

But myelofibrosis weakens your immune system. While all of us worry about the danger of progressing to AML (acute myeloid leukemia) that is not what kills most patients. The greatest danger is probably infection - common infections that most people can fight off easily. But because of a weakened immune system, a myelofibrosis patient will eventually be overwhelmed and die.

Nobody wants to have a cold or the flu, but most people don't think it will kill them. With myelofibrosis you always wonder, "Is my immune system up for this?"

So far, so good. I've had various colds and infections, but they all progressed and passed normally.

I think this cold will pass normally as well - the sooner the better.