three years.

a double post from myspace.

i can recall being sprawled out on the floor three years ago this morning with the worst stomach pains i’ve ever felt. i can recall exactly how it felt to have both a monstrous migraine and what feeled like a stomach filled with fire…combined with the most limiting musle stiffness/achiness i’ve ever experienced…three years ago today.

what started out with flu-like symptoms actually turned out to be my diagnosis with systemic lupus erythematosus, more commonly known as lupus. most people i encounter either have never heard of lupus, or are clueless as to what it is. i, on the other hand, was well-versed on the disease…my mother also suffers from lupus. upon diagnosis, the tears that flowed were mainly because of my only reference to the disease was my mother’s bitter battle. frequent hospital visits, numerous physical limitations, endless surgeries, nagging joint pain, and extreme fatigue instantly came to mind. i feared that this was my future as well. dreams of dancing instantly vanished. that moment was then followed by the most formative, influential days, weeks, and months of my life. i’m undeniably a different person based on these experiences….

for those that aren’t informed:

systemic lupus erythematosus (SLE) is an auto-immune disease. so, imagine the force and effort your immune system exerts when fighting colds, germs, bacteria, infections, etc. well, when lupus is active in one’s body, your body exerts that same force to attack itself’; the immue system can’t differentiate between good, necessary organisms (organs and such) and invading organisms. in my case, my lungs, kidneys, heart and brain were attacked. it causes swelling of the joints, extreme fatigue and muscle atrophy. as was the case with me, diagnosis is often difficult. lupus is known as “the great imitator”, because its symptoms mimic those of other illnesses. as with many other diseases, one must exhibit certain symptoms simultaneously. otherwise, it’s often mistaken for the flu. with my mother’s suggestion, i was tested for lupus in january 2005, but heard nothing of the results until my diagnosis in may of that year, when i went into the emergency room vomiting excessively and exhibiting what appeared to be flu-like symptoms. one may also experience anemia (as i eventually did), lung inflammation (check), and renal failure (double check). there is no cure for lupus. it’s treated in a variety of ways. numerous forms of chemotherapy are often used to control the disease’s spread. i underwent six months of cytoxan therapy, which is one of the less-harsh treatments one can receive. while my reaction to this chemical got worse as time passed, my experience was pleasant overall compared to stories i’ve heard. i only lost six locs during this process. my biggest gripe was probably the side-effects from prednisone. a vicious, but necessary steroid. a swollen face, monstrous appetite, hyper-active kidney function, frequent migraines, sleepless nights, altered heartbeat, nightsweats, and accelerated hair growth. and later….intense paranoia. i didn’t realize THIS until months after the fact. prednisone is no joke.

conversely, discoid lupus solely affects the skin. it results in inflammation, scarring, hair loss, etc. while SLE attacks the internal organs, discoid lupus causes the immune system to attack normal skin cells. this can lead to bruising and blotches on the skin. contrary to the story he may tell the public, discoid lupus caused the intense scarring on singer Seal’s face. discoid lupus may be evidenced by what’s known as a “butterfly rash.” simply put: a mark that often resembles a butterfly that usually appears on the face, neck, or scalp. my sister noticed this on her neck a few years ago, but, thankfully, exhibits, no other symptoms. discoid lupus has no major affect on overall health, as other organ systems are attacked.

my mother suffers from both forms of lupus. external and internal illness. and that was my fear. i’ve gained incredible insight from experiencing this with her. it brought us closer in ways few other things could. i don’t have the energy to rehash alllllllllllllll the ways ive changed since then, but each year since diagnosis, i honor and voice appreciation of her strength. without her example i don’t doubt that i would have died in the midst of that struggle. seriously. her guilt for my pain was apparent to all, and i do my best to show my love and support of her everyday.

i’ve shared my experiences in detail previously, here.

when speaking on this with others, i’ve referenced michael jackson, who, contrary to popular belief, was diagnosed with lupus in 1984. i’m not sure if he suffers from SLE or discoid lupus. regardless, i promised myself that i’d get involved with the lupus foundation of america in some fashion this year. months ago i corresponded with a chairman via email to allow me to speak at a few meetings or events about my journey with lupus. hopefully that materializes because i’m certain my tale could provide insight and hope to other sufferers. i encourage all of you to get educated on the disease, as you may know someone who is affected by it and chances are that you’re clueless as to the extent of their struggle.

a few resources:

LUPUS FOUNDATION OF AMERICA

Lupus Factsheet

Lupus Now

Lupus on Wikipedia

Lupus Foundation Facebook Group

as seems to to be the case each year on this day, i’m unusually emotional. near-death experiences will do that to you i suppose. i’m thankful to even be here to write this. i’m thankful for mobility, which some with lupus don’t have. i’m thankful for the dopest mom in the world, who continues to fight daily. despite being sick and/or tired more often than not, mom wears the biggest smile and makes sure the world is taken care of. she’s a fucking superhero. so don’t fuck with me or i’ll have my mom dig in that ass, mmkay? lol

i’m off to reflect, write, and live life.

have a dope day.

~chris.alexander
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