closing doors, opening windows

you know that phrase, “when god closes a door he opens a window”? well, that’s kind of what having a chronic illness is like.

when i found out i had all these food allergies a few years ago, i just mused that it was my body’s way of saying, “you’ve had enough of this, try something else.” i was heartbroken to find out that shellfish and berries were on that list... but it made me seek out other foods and fruits that i normally wouldn’t go for.

i can say that my life has definitely changed since becoming sick. and when i say “changed,” it’s more like “exchanged.” i no longer consume artificial sweeteners if i can help it (it’s impossible to find long-lasting chewing gum that isn’t sugar-free!) and try to eat organic fruits and vegetables whenever possible. i don’t shave my legs with a razor, get manicures or pedicures, or fly on airplanes—all for fear of infection. (i am just so grateful and lucky to have traveled when i was younger.)

i can’t do even the most mundane tasks (such as laundry) without help or K doing most, if not all, of it. (when i used to live at my siblings’ house, i once cleaned the bathroom and ended up having a flare the next day.) i would venture to say that i sleep more than a newborn baby but i still feel tired afterward. i am on more medications on a daily basis than most senior citizens and i sweat constantly from the steroids. i have so many medical bills that i am considering bankruptcy.

however, so many good things have happened because of my illness as well. i moved closer to my family and see them all the time. i joined their church and have been going when i feel well. and one of the best things that could have happened was having K move closer to be with me. i read food labels a lot more now, and am more conscious of what goes in/on/near my body. i can’t say that i’m junk-free (yes, i need to work on that), but i take my vitamins and calcium (like i always said i would one day), and i am more sensitive to things that can bring on a flare. i also give myself manicures/pedicures, which, while saving tons of money, is not the same as having someone else give you one! however, i may one day stop using nail polish altogether because of the chemical contents. i am looking into organic makeup and health/beauty products as well.

before lupus, i was one of those persons who had to do everything herself... i always thought that asking for help was a sign of weakness. but acknowledging one’s limitations is not weak, it’s human. i mean, when you’re in the hospital hooked up to an IV and can barely stand up, much less lie in bed without being in pain, it’s better just to accept help than to fight it off. especially when you need to use the bathroom and can’t walk unaided. (nothing says “help me to the toilet” better than the thought of using a bedpan... though i probably should have opted for one now that i think of it.)

it’s difficult not to think about one’s humanity—mortality—when faced with an illness. i have much more compassion for those with illnesses and gratitude for those who make it their life’s work to find cures and treatments for them. i never understood the importance of donating blood until i had to have a transfusion... and another... and another. one of the most bittersweet decisions i’ve had to make is to not have children—i’d always assumed that i would have at least one. in a way, it is kind of a relief, because of the fucked up genetic legacy that i would be passing on if i did have a child. there will probably always be a hole in my heart because of it, but i’ve found some comfort in knowing that i won’t have the responsibility that comes with having children—financially, emotionally and physically. consequently, i’ve come to relish the idea of having an extended dog family... they’re kind of like kids but they don’t talk back. :)

it’s kind of funny... being on a pretty hefty dose of steroids has its door/window moments, too. not only do they suppress my immune system, but they make me sweat like nobody’s business (i often wonder why i shower before i go out). however, my skin is fabulously clear—no blemishes like i had in San Francisco. and even though the steroids have made me gain a ton of weight, i can, without any reaction, eat shellfish and berries again.

go figure.