Tuesday, March 13, 2012


"They paint their own pictures then they crop me in,
But I will remain where the top begins.
I am not a word, I am not a line...
I am not a girl that could ever be defined.
Cry my eyes out for days upon days,
Such a heavy burden placed upon me! 
But when you go hard your 'nays' become 'yays'!" 
*"FLY" Lyrics by Nicki Minaj and Rihanna*

We all want independence. Sometimes, when struggling with a health issue, we see ourselves as hopelessly dependent on our parents, our nurses/doctors or our treatment centers. We can't see ourselves as strong and independent women. We see ourselves through the lenses of our illness.

Today, I want to write a post on independence, bleeding disorders and hope. I'm sure every single one of you reading this post has a story to tell. A story of battles won and tears shed and burdens carried. What got you to the place you're at now? How do you define yourself? Or, rather, what do you allow to define you? How do you find the strength to face the challenges your bleeding disorder presents? When you look at the girl in the mirror...do you admire her courage?

When I was young, (about 9) I was diagnosed with von Willebrand's Disease type 1. I grew up knowing about my condition, though it took a while to understand it. I needed to hold Mama's hand when the nurse ran tests or drew blood. I closed my eyes and bit my lip and cried when my parents took me to our HTC to be tested for various things. I was dependent on them. I looked to them for strength and assurance when I was scared. When I was hospitalized after having a baby tooth pulled at the Dentist's office (before I was diagnosed), I was terrified of being alone or facing the tests without my parents. The first time I had an IV, I sat in the chair trying to focus on the Dragon Tales episode playing on the TV on the opposite side of the room. I tried so hard not to cry, and all I could think about was how much I wanted to get up and leave.

My dependence was totally normal. My fear, well, it was sometimes irrational. :) But I was a little girl who didn't understand how to talk to Doctors or ask about medicines. My parents did their job by taking care of me and making sure I had every appropriate treatment and medication. They did it because I wasn't old or mature enough to do it myself.

Now, however, it's a different story. I'm 18 years old, and a high school senior getting ready to leave home for college this August. My condition is my responsibility. I'm responsible for talking to and educating my friends, eating right, exercising, wearing my medical ID bracelet 24/7 and talking to my Doctors about how to further take care of myself and my bleeding disorder.

Gaining independence takes time. It took me about 14 years. :) Looking back I see how decisions I made led me to this independence. From my own experience, I'm going to list a few of those crucial decisions:

1. Getting over my fear of needles.
*This might be just me. But when I was younger, the mere mention of a blood test or IV would make me sick. One time, my parents told me we were going to the HTC and that I was going to have to get some blood drawn. I stressed so much and made myself so sick that when we pulled up to the HTC parking lot I threw up in the car. For me, getting over my fear of needles was a huge step in gaining my independence. When I had blood drawn, I started smiling and talking to the nurse and doing absolutely everything to keep my mind off the needle sticking from my vein. I stopped asking to hold my mom's hand and I started asking the nurse about infusions and the tests she was running. I made an active step to better understand what was going on and therefore desensitized myself to needles. The last time I had an IV (late Oct./2011 I think) I sat and watched the nurse mix the factor and made it a point to remember the steps. I watched her stick the needle and took slow, deep breaths. I told myself that I was a strong, brave, independent young lady. I told myself I could handle it. And I did. :)

2. Educating myself about VWD.
*Until you understand your bleeding disorder, you will always be dependent on those around you. Until you can confidently talk to doctors and nurses and friends about your condition, you'll always be needing someone to explain and stick up for you. Learn as much as you can about your bleeding disorder! Understand your limitations and your treatments. You be in control of yourself. Find camps or retreats and meet other people your age with bleeding disorders! The most I ever learned about VWD was at a Women's Retreat in my home state. My mom and I went, and I walked away with SO much information! Plus, I met other girls who knew exactly how I felt. :) I formed a support group at that retreat that I will always have! (And I kept going. :) My next trip up is at the end of April!)

3. Be open and willing to talk. 
*My friends know exactly what my bleeding disorder is, how it affects me and what I can and can't do. They understand when I have to excuse myself from a paintball party or a volleyball game. Telling them about my VWD and educating them on how it works was one of the key parts of my independence. Not only was I raising awareness, but I was overcoming my fear of being "the odd one" and sticking up for myself!

These are just 3 examples, and I'm sure there are many more! You all probably have your own lists of keys to independence!

Now, I'm by NO means encouraging everyone to sever ties with your family or doctors or treatment centers. Those people are they to help you! Without them, we'd all be in a sorry state. :) What I'm promoting is the idea that your bleeding disorder is your responsibility. Don't cast it on someone else. Learn how to stand on your own and educate yourself and be an advocate! Be independent and confident! Look at yourself in the mirror and know that you have the strength to overcome your fears and doubts and be yourself! Don't let your bleeding disorder shape you...let it be a part of you that is unique and beautiful. :)

Much love to all the girls fighting this battle with me! We can do it, ladies! Have faith and celebrate your independence and your beauty! 

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