in the world is within you.
it is when you are watching that film your mind created, over and over.
the film made of the scariest, darkest, most terrible things that could happen to you…
and sometimes you become so addicted to the sadness and pain, that you cannot let go, but keep watching these same scenes over and over again…
until life and light drown out of your being.
as the lupus conference is drawing closer… i am getting more anxious and nervous.
i am not sure if finding more details about this disease that i have, is going to be beneficial for my well-being and recovery.
my positive light say yes! with conviction… often, i would have that surge of drive and adrenaline… i think about going back to university, or even be involved in some sort of research… even though research and epidemiology were my least favourite subjects when i was at university… but when i think about what i could learn about lupus, i get excited… i feel like, i have an obligation, a duty for myself… to find out what the fuck is going on with my body.
but,,, the more i read into the journals and scientific data… the more, i feel so… detached, helpless and depressed. it feels like, people like me… and the symptoms we go through… are all just numbers and statistics… percentage of risks, chances, probabilities…
it sucks, you know.
it really sucks to not know exactly what is happening to you, and what you can really do to really prevent it from happening.
i am doing great now, still slowly lowering my medications. i can still work full-time and do a lot of things on the side, like this fundraising project… but the data says that… between 5-10 years from the onset of Lupus and diagnosis… patients will develop kidney inflammations; or what they would call, nephritis… which could linger around and just stay as it is, a degree of inflammation… or it could really turn into chronic kidney failure…
so, every time i am reading these data… the questions keep popping in my head; am i going to be one that matches the statistic? or am i going to be the outlier? is there a way for me to find out what i can do so i won’t become the statistic? is there control for me at all?
this is not helping, is it?
i keep thinking about Kirstie Tancock, one of my heroes; guardian angel that she is. she still lives, she still is so real to me… i keep thinking, how the fuck does she deal with cystic fibrosis all her life and getting out of the downward spiral of an internal roller coaster when things get rough… it’s maddening. she’s gold. she’s pure as pearl. she’s soulful and graceful.
i need a big bear (((hug))).