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 not constantly consume me. I'd love to be optimistic and hopeful about my upcoming appointment but I also feel afraid. I am so afraid that it is going to be the same song and dance that has been my life since I was diagnosed. I am terrified that I'll be challenged with the same wall that I've been struggling with the last few years. In the back of my mind I know I'll be able to handle whatever is thrown at me but in the meantime... it's been hard to keep a calm, open mind. I know that all I can do is walk into that appointment with my facts and my story and my questions and that I have to advocate for myself and that anything beyond is out of my control. I know that in the end, regardless, I'll be a stronger person and that all of this is preparing me for "the real world". I know that at the end of the day these experiences are pushing me to be a better advocate in the community and a better, more well rounded person. I know that whatever happens, happens and that we'll deal with it. I'm trying to be cautiously optimistic and stay positive...we'll see how it all turns out.
My most recent trip to the hematologist and my latest round of bleeding has left me feeling like I'm fighting a never ending battle. I've been consistently bleeding for about 4 weeks now with more pain than I have ever experienced. My meeting with my hematology team was less than encouraging. My lab work came back ok so they've decided to take me off Stimate due to a risk of clotting. I understand and appreciate where they're coming from but in the meantime what now? I haven't been seeing very good results from the Stimate anyways so I guess that in hind site it doesn't really matter... but it does. I feel like I'm insane. Well, if my labs are good does that mean I don't really have a bleeding disorder? What if this is all in my head? Am I just being a baby about it all? No. This is real, every part of it. Alright, my labs look good...awesome... but what are you doing to help relieve me of my symptoms? "You should set up an appointment with your ...
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