Over the past couple of weeks, ever since i got back from Dallas, I've been struggling with this discord between how how darn gorgeous I look on the outside compared to the internal daily, life and death situations occurring on the battle fields of my body and organs. I've always masked the numbers from my blog, knowing they are just numbers but recently I have been wanting to educate my friends and family on the gravity and reality of this disease. There is no cure and death is a constant topic I think about each day, even while trying to take advantage of each moment. I wish and pray that I had diabetes or breast cancer or leukemia, one of these diseases that scare you, make you feel mortal but inevitably are manageable.
I never imagined the intense physical pain and discomfort that would come along with my own disease. Sitting bedside to use a urinal requires high dose painkillers and taking a shower remains one of then most painful activities of the week.
I take each day one at a time and when I reference closure or an end, that's exactly what I want: an end to the pain, comfort to the turmoil of this disease and some peace to the end of the day for well needed rest. Sometimes I think paralysis would bring some solace; at least I wouldn't be able to feel the pain. Other times i think this slow struggle is from my grandparents, whom loved me so much, and yearn again for our upcoming reunion.