I don't really have any exciting updates to share. But I did get outside and soaked up some of the good weather we are having and just sort of thought about things so I wanted to write this down.
People I meet are constantly thrown off with the fact that I have a terminal illness. I worked for as long as I could, right up until the day I was admitted to ICU for two weeks and told I won't live much longer. I don't talk much about my illness and at times get frustrated with being unable to do all the things I could even just a year ago. My diseases brought me down hard when my body couldn't take it anymore. And I won't lie, I have some days where it is more difficult to get out of bed than others just for the fact that my mind sort of thinks 'what's the point?'. BUT. I never, ever allow that to run my life. On those days I work even harder to find a way to take charge of the day, shower, put on real clothes and maybe some lip gloss and find an activity that will bring me joy. I am also incredibly fortunate to have this huge support system of people that love me and will always find a way to lift my spirits, any time I need it. I don't let it beat my spirit down, which is what I think people see in me that surprises them. I truly believe that continuing to live my life with gratefulness, graciousness, faith and happiness is one of the reasons that I am still alive. I know there are people out there that would take the other route, crawl up into a ball, decide they can be nothing but miserable and sick, complain about their situation and accept their fate. That isn't me. I have lived my life to the fullest, to the best of my abilities and plan to continue to do so. I focus on the things I CAN do and I fill my cup by picturing all of the things that I WILL DO, eventually. I suppose sometimes this attitude and my behaviors may have held me back at times when it comes to getting listed and I will own that for what it is. Although I fully realize and comprehend how sick I am, I don't tend to play the part. So even the the words coming out of my mouth at some of my visits have been "I am definitely declining and I am getting frightened that I might not live long enough to see a transplant possibility with my appointments being scheduled so far out" - it is like they were not hearing those words because sitting before them seems to be a girl full of life. I still smile all the time. I always ask how others are. For the ones that I know I have seen before, I try to catch up with them since our last visit. And I laugh a lot. So although I am dying and even feel like I am dying, my appearance seems to throw people off. A dying woman couldn't possibly be so at ease, smiling, at peace and content, right? As I become more and more ill, now it is like they feel the need to 'check in' with me, to see if I really understand that I am dying. I have had more than one provider actually say to me 'do you understand how serious this is?' or 'you are very, very sick'. As if I haven't been advocating tirelessly for them to have more of a sense of urgency, even just to at least match mine. It has been frustrating. But I also can't find it in me to walk around a shell of a human being, no smiles or joy or peace. I can't even picture it. And I don't want to.
I am dying. AND today was a good day. Both can be true!