mintcar

i wish someone told me when i was diagnosed that kidney involvement in lupus is associated with an increased risk of death and end-stage renal disease. it took me another flare and four more years to come to digest this fact.

i wanted frankness. i asked my first rheumatologist in san francisco (a UCSF professor) if i would or could die, and he straight up said no! at home, i got a lot of tiptoeing around the topic from a bunch of pollyannas, which contradicted the dire warnings of the only person who seemed to really know - my mother! there were times i was convinced that this disease is something that has and could be in remission forever. with all these conflicting messages, i chose to go the way of partially blind optimism, and ended up not being as rigorous with my health than i could have. (if i knew what i know now, i'm not sure if i would have moved to new york city - although i have no regrets).

it simply makes me very angry to have been misinformed for so long. i've been brought up a skeptic, but now i am a thousand times more careful to vet information i receive from anyone, no matter how professional a source, and definitely to not make any important decisions (or let anyone influence my decisions) when i am ill or on serious meds. i rely now on people who have actually lived with the disease, my own experience, and what i can extract from my meager wide-net research. (thank god for the internet)! having been treated condescendingly so often when important life decisions were at stake makes me extremely wary of anyone who dumbs down their language or uses euphemisms of any kind when they speak to me about such matters.

coming to terms with death and lifelong illness will take time. practically, i need to act on the decisions i make for my health, including managing stress: lowering stress at work / ending work that is too stressful, and staying away from negative people and situations that stress me out. (don't get me started on how many roll-eyes i will give a day to people to people who complain and agonize over nothing - not to mention take the privilege of health for granted by destroying their bodies with food, drink, drugs, etc). i'm not a hard ass by nature, but i will whip it out when i need it!