Predictably Unpredictable: My Experience with a Rare Bleeding Disorder

As my upcoming appointment at UC Davis for a second opinion approaches I can't help but feel a little anxious. These past few months I feel like I have been repeatedly ramming myself into a brick wall trying to get answers. I have taken notebooks full of questions into the hematologist and the only consistent word I have heard is no. There has been no explanation or reasoning behind it, just no. I am fighting tooth and nail to get an answer about what is going on with my body and what we can do so that I can start living life. Honestly, I haven't really been living. I think I've been going through the motions. I have missed out on my first two years of high school and numerous social events because of my bleeding disorder and honestly, I'm over it. I am so over living my life trapped within the world that is my bleeding disorder. I am ready to live a life where my disorder is not all of me. It will always be a part of me, I understand and accept that, but I need it to n...

There are two types of people in the world. The kind that care and try to understand the situation and those that don't. One isn't necessarily better than the other- that's just how it is. Some people are predictable. They are who they are and you know to expect that from them. There are however the instances where words fly out from left field and slap you in the face. The hardest part is when it's coming from someone who should love you unconditionally and support you no matter what. I've had my fair share of individuals close to me not understand and fail to take the time to try. I believe a major part of understanding the life of a bleeder is asking questions. I find it difficult to want to explain my day to day life to people who don't seem to care. In my eyes, it's a waste of  time.  It's hard to affectively educate as an unaffected person tells you how you're supposed to live your life. Let's all keep in mind what they say ...