Pushing Beyond My Comfort Zone

… is something I try to do on a regular basis.

I have always been curious about getting a tattoo, and knew that I wanted to, but thought I was too much of a chicken to ever go through with it. So I figured it was time.

My older brother and I have had a Superman “thing” for years. We each have several medical conditions that defy explanation and cause the docs to make funny faces and scratch their heads, so we laugh about it and call ourselves Kryptonian. My most recent blood test confirmed that my bizarre — and evidently, benign — blood condition* was probably caused by a rare genetic mutation. I smiled and thanked my hematologist for medically confirming my status as a mutant being. It explains a lot, really.

Other outrageously happy associations with this symbol have emerged along the way — linking it with my strength and health and good luck — so it was clear to me that it was time to make it official.

* Essential Thrombocythemia — I have enough platelets to stop the bleeding of four adults. Go ahead, laugh. It’s funny.

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5 responses to “Pushing Beyond My Comfort Zone

  1. {{{Kay}}}

    all right, girlfriend! :D

  2. So basically, you have super-rich blood? This is a good thing, right?

    I mean, it doesn’t make you sick or need to be thinned, right?

  3. Well, the concern is clotting/bleeding problems, and I don’t understand why, but it can go either way. I take an aspirin every day to keep the platelets from sticking together, which also very conveniently reduces the frequency of my very annoying migraines (which are very likely a direct result of the platelet thing.)

    Another weird phenomenon that made everyone go “Huh?”: with each pregnancy, my platelet count slowly decreased and was within the normal range by my due date. As soon as each baby was born, my counts shot right back up again.

  4. Hi :)
    I also have ET, and I also had trouble understanding how we could be at high risk for both clotting issues and hemorrhaging. Now that I’ve learned more, and discussed it with my doctor, I think of my platelets like they are unruly teenagers in a high school. They hang around in groups in the hallways, blocking the way for others (clotting), and when it’s time to go to class (stop bleeding) they have a bad attitude and blow it off :D.

    Julie

    Julie, I love your metaphor. My disease has progressed and I now have significant bone marrow scarring, a topic I am likely to write more about soon as it has become such a prominent part of my life. Thank you for commenting… hope you have great medical care. I thought mine was good, but it is only recently that I have gained a full understanding of how serious my disorder was, based on the fact that it has become more so. Of course, life goes on and we will deal with challenges going forward… there’s not much point in looking backward, so I try not to. :) -KDF

  5. Hello again :)

    I just got back from the Mayo Clinic, in AZ, where I was accepted as a patient. I am very excited to be finally receiving better medical care. I was starting to doubt my hematologist, which is not a good thing. I’m waiting for the results of my bone marrow biopsy, and in the meantime, they have decided to take me off of Hydroxyurea and put me on Pegasys, to better control my counts and finally address all my symptoms.
    I’d love to talk to you more about ET. Have they changed your diagnosis to Myelofibrosis, now that you have the scarring?
    I do have a blog about my experience with ET, if you ever want to stop by and take a look. Let me know what you think :).
    http://julie70.wordpress.com/

    Julie

    Julie, thanks for checking back in again… I will definitely check out your blog. I have a local doctor, but I’m also a patient at MD Anderson Cancer Center in Houston (yay us… we’re at the two best places to be for this weird disease.) You were smart to seek care where you did… these diseases are rare, so I think it makes sense to go to the place where doctors have the most experience.)

    Yes, I now have a diagnosis of “Mixed myeloproliferative disorder” since I have characteristics of all three… chronic myelofibrosis, polycythemia vera, and essential thrombocythemia. They think that I likely had PV all along, not ET, but my understanding is that it doesn’t really matter all that much what we’re calling it. The good thing about my mixed status is that we can likely fit me into any clinical trial if space opens up as I can qualify with any of the above diagnoses. It’s quite an adventure, huh? -KDF

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