Out Of Chaos

“What troubles you is not reality itself. What troubles you is your interpretation of reality. What frustrates you, motivates you, inspires you and disappoints you are not the facts of the situation but how you choose to view them. And in that fact is enormous power. You are never at the mercy of random circumstance. On the contrary, you are in control of your whole world because you are in control of the way it all affects you. Your choice in every moment, of how to see that moment, really matters. Your choice of how to respond to whatever comes your way, really matters. You have great influence over all that matters to you. You can decide what it means to you, and you also control what you do about it. You could choose to assume that you’re powerless, and your very assumption will make itself true. Or, you can choose to see the real power of your perspective, and use it to create the life of your dreams.” — Ralph Marston

I am struggling. Many different obstacles have presented themselves to me in the last couple of months since I’ve been home from my adventure at the University Of Washington. One obstacle that I had to concede with was getting a care provider to aide me in household chores and other areas of my life. Even though, Myron is a kind man, does his job well, I am still feeling debilitated, shame, guilt, and a whole host of different feelings about this whole process. That isn’t the only thing that is going on in my evolving brain, I am also processing the fact that I am sick, that I have a lot of work ahead of me in order to get back to a healthy state where I will be able to travel, photograph, breathe, exercise, do other things besides sit at home ruminating over what went wrong in my past and past relationships and my mistakes and all that jazz. I am so tired of focusing on the negative aspects of things, so I have decided to change that.
I have some good things going on, one, I am a student, going towards my degree finally. I have a great team of doctors who are fighting along side of me while battling Wegeners Graulomatosis and there is a treatment plan and I can reach remission. It just takes time and a lot of life changes in order for me to reach that stage. I found a helpful website to aide in my research about WG, because I am tired of relying on the information from Dr. Gardner at the University of Washington and him saying that my trachea being inflammed is not part of Wegeners. He is wrong about that and this website will be helping me prove that. The website is Vasculitis Foundation Last month I joined this foundation, in order for me to gain some perspective of what I am up against. They help individuals like me find good doctors for rare diseases and show us the research being done, and Rhematologists who know what I have and how to be diagnosis, so that I can share this information with my doctors that I have now. They even have a list of physicians to aide the patients to help their doctors understand and get more information about the diseases. I like that, I am hoping to share this information with Dr. Park and Dr. Gardner, though my expectations from Dr. Gardner is not that hopeful, because he seems to be egotistical about knowing it all and he likes to argue with me. I do not like that, I don’t want to argue about what my body is doing. For one thing, I do not have a strong voice, I am a strong woman, but my words do not come across that way when my voice is weakened by the trach. Anyone who knows me and wants to know about my disease should check this website out and also if you have this disease and just found out, join this group and arm yourself with the information to share with your doctor. That is what I am going to be doing. I will let you know how it goes on Friday when I get back from Seattle.
Even though, I feel extremely exhausted from this whole journey, which started for me in the summer of 2008 and I have a lot of obstacles, which includes a break up of relationship that meant a lot to me and then two experiences where I literally came close to being dead, and the most recent experience with death was just in December of 2011. Now, my right hand is swollen from the inflammation from the Wegener’s and I am hoping to start treatment soon. My life is basically doctor appointments, Myron, my nurse aide come to help me live a better life, and school. I want a bit more than that. I have this dream of finishing school, traveling to San Francisco for my 40th birthday with my friends Summer, Karen, and Amber and of course when Amber turns 40 doing something with her, and when Summer turns 40 doing something with her. I am blessed with an abundance of support. I do have amazing doctors here, and I am grateful for that. I just want a little bit more adventure and I hope soon, after my time of healing I will be able to do it. I am a butterfly, in its cocoon, waiting for her bright moment where I can spread my colorful wings, and show off my colors. The quote above I found on Pinherst and it resonated with me. Because you can choose how you see the adventures of life, so I am choosing this journey, this disturbance as a way for me see that I am loved, that I have a lot of great blessings in my life and that I can make something beautiful out of this chaos.