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Tuesday, May 25, 2010

Let it be a dance we do

Tell me a story of who you are,
And see who I am in the stories I am living.
And together we will remember that each of us always has a choice.

From –
The Dance
by Oriah Mountain Dreamer

This morning I awoke earlier than usual, jittery, and craving sweet foods. It is the day after an infusion of clotting factor. Years ago I began having allergic reactions, which included hives and shortness of breath. Now I receive pre-treatments that control these reactions, however one of the pre-treatments is a corticosteroid. It makes me hyperactive for at least 24 hours before I crash. It is a familiar feeling to me now and I have learned to adjust.

In the 60th year of my life, I changed my approach to dealing with my bleeding disorder once again.

I realize that I am part renegade and part coward when it comes to treating my bleeding disorder. In my childhood, the advice from my hematologist was to infuse with Factor I (fibrinogen) only when I had a life threatening bleed. Blood products were dangerous and not to be used freely.

Frequently long days of rest, elevation and ice would slow a bruise enough for it to be managed without and infusion. There were topical solutions like Gelfoam sponge™ and Blood Stop™ that could be used on surface wounds.

When I was a teenager one physician who did not believe that I could be a girl and have a “real” bleeding disorder carried this advice to an extreme. During those difficult growth spurt years I suffered unnecessarily from bleeds into my ankles. The effect of the untreated bleeds has been permanent arthritic damage.

For a period of time in the 70’s, I took the other road and joined the flock. The mantra then was “when in doubt, infuse.” I was on the Board of the National Hemophilia Foundation when HIV began to infect the flock. We were once again the canaries in the mineshaft. Many of the flock already had Hepatitis C.

I abruptly left that heavily trafficked road, to follow “the road less traveled.” It felt familiar and safer although more challenging. Like Robert Frost described, it has "made all the difference." Frost never said it was a better road. Most people like to think that is what he meant. I would like to think that my choice of roads brought me to the age of 60, but I don't say that anymore. I do believe it was just the road that made all the difference in my life.

So now that I am over 60, I have chosen still another path. Each month I go into the outpatient hematology/oncology clinic and get a dose of cryoprecipitate. It brings me up to about 50% of normal clotting. The half-life is long and even though the research does not back me up on this one, I believe I can notice an effect for at least two weeks.

It's a matter of choice. Even if my body can no longer dance, I feel like it gives me some time for my spirit to dance.