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Monday, January 7, 2013

The Devil I Know

Often I have found myself explaining to people who ask, “So, if you have no fibrinogen, do you bruise easier?” What I want to reply is, “No, I have very thick skin.” Of course I would be thinking figuratively, not literally. I’ve answered so many of these questions in my lifetime I have adopted a defense system that shields me from blood phobias.

The questions were scary for me when I was a child and someone would ask, “Can you bleed to death from a cut?” The questions were embarrassing when I was an adolescent, “How do you stop bleeding from your monthly periods?” As a young adult the questions seemed ridiculous, “What happens when you shave your legs?”

Most people fumble about trying to phrase the question they really want to ask, “Will you start to bleed in front of me and collapse in a pool of blood?” Eventually, I grew weary of the questions.

I learned a skill set and developed a level of confidence. More than that, being a “bleeder” became part of my identity. It did not define me, but I knew how to handle it. Then came the game changer in the form of an email message from a friend in California. She had been born with a fibrinogen deficiency and had reached out internationally online to find others who also had low levels or no fibrinogen.

A small group of us had been exchanging information on an email list for several years when she wrote saying that she was now having problems with thrombosis. At first there was disbelief, It gave me the heebie-jeebies when she reported that they were giving her clotting factor and anticoagulant medications at the same time. Then in 1997 a young woman in Switzerland sent a message that she had several embolisms in both of her lungs. When I was hospitalized not long after that for an internal bleed in my lower intestine, my hematologist laughed when I told him that an embolism was my biggest concern. It was no laughing matter to me though. Since then one of the members of our group has died from complications of thrombosis and one has recently reported that she lost the use of her right hand and some vision when clots formed in the arteries of her arm and neck.

Having long passed the fear of bleeding I now found myself afraid of the opposite. The irony is that I am starting all over with the pattern of vulnerability, misunderstanding, and angst. It felt like it is was new devil sticking its tongue out at me. It’s not, though, its just that same old devil testing me. It smiles and whispers in my ear. “You think you are in control, but you aren’t.”


Anonymous said...

Hi! My name is Nicoleta, are 13 years ... and I `m from Romania
I want to tell you that my English is not very good
. I'm glad I taste a person like me, I suffer from the same disease, congenital Afibrinogenemie. I was diagnosed in 2003.
I'm very curious, what treatment keep, and how will I be in the future, I barely 2 years ago I found the medicine. I'd like to keep in touch somehow. . If you will give my facebook account

Anonymous said...

Hi Nicola,
You can keep in touch and meet more of us on Facebook MyGirlsBlood Discussion group. Hope to see you there.