Sunday, October 16, 2016

lupus and ABP

hi everyone!

i hope you're enjoying my favorite season of all: fall! There are few things I love more than crisp air, those October-blue skies, and the sudden burst of flame-colored leaves falling to the ground.

in all the autumnal glory, i thought i'd give an update. Back in February, I shared with you all (the few people who actually read this blog) that I have rheumatoid arthritis. Getting diagnosed with RA, almost a year ago, was pretty harsh news. At 24 years old, I thought my life was over.

but then, another bomb dropped.


i have lupus. Before the numb fingers and toes, swollen achey joints, hair loss, fevers, and random rashes, I had absolutely no idea what lupus was. And now almost a year later, I feel like I've barely touched the surface of how deep this disease goes.

lupus is an autoimmune disease. It's not an STD, it's not contagious, and it's technically not going to kill me. Unlike some acquired diseases, lupus is essentially an overactive immune system. My body thinks that my tissues and organs are foreign bodies, and so it attacks them and damages them beyond repair. If anything, my immune system is an over-achiever in self-defense. A for effort, I guess.

my immune system cannot decipher between the good and bad. There's no difference between the flu, and my healthy working kidneys. To my immune system, my joints are the same as the common head cold. According to my body, my 20/20 vision is just as bad as strep throat. Every living bodily cell is bad when you have lupus.

the medications and doctors visits are endless. To date, I'm on 10 daily, maintenance medications. Twice a day. On average, I see three specialists a month (with the increased insurance copay). When I'm flaring up, you can usually throw in some Prednisone or steroid titration packs into the mix, just to get me over the hump. This doesn't include the vitamins, minerals, and other supplements I take. This last week I've been living with walking-pneumonia, bronchitis, and a sinus infection. That's 3 more medications I have to take, just to manage the annual seasonal yuck.

the planning is just as endless, too. I've had to learn to "plan for the unexpected". That fun day trip to the theme-park? Not gonna happen. The weeklong beach vacation with the boyfriend? I'll  be in bed half the time. That midterm? Hope I can make it up. Even just the process of daily living is too hard, sometimes.

you never know what you have until it's gone. Not just prolific lyrics or poetry lines.

after my chest x-rays and exams this week, I came home to my mom, who was eagerly awaiting what the doctors had to say. I turned the kettle on, pulled out some tea, and told her their prognosis.

and then i sobbed. I cried; hard, hot, intense, angry. I bawled. It was the kind of gasping cry; the kind that only comes out, deep down from the depths of your heart, from pure defeat and frustration.

"i can't remember the last time i wasn't sick," i told her. 

for the last year I've spent no more than 6 weeks without a flare up of my lupus, RA, or experiencing the common bug everyone's bound to catch. Yes, some of my flare ups are stress related. And yes, I can control some of my stress. But until you experience the stress you get from stressing about your illness, it's hard to give any sort of guidance or reprieve.

so don't tell me to relax and try to de-stress myself, because Lord knows I'm trying. Don't ask me about my protein. I can promise you I'm getting enough of it.Don't ask me if I'm taking my multi-vitamin, and insinuate that I'm under-nourishing myself.  Don't tell me it could be worse, when I am fully aware of the blessings I do have. And most importantly...

don't cry for me. I am the only one who gets to cry, because this is my life and my experience. . You can cry for me when I'm gone. I don't need tears. When I'm down in my deepest depths of pain, resentment, and frustration, the only thing I need is support.

so support me when i'm my at my worst. 

tell me i'm much stronger than i ever thought i could would be. Tell me I'm beautiful when my hair is falling out and I'm too weak to care for myself. Tell me some good news, when everything I've heard that day is everything less than bleak. Tell me I'm still mildly brilliant, when my lupus fog has clouded my brain so much that I can't articulate my thoughts and feelings.

tell me you love me, when I least deserve it. 

because your support and strength is the only thing i can count on. 

lupus research is in it's infancy. There are a few trials currently being conducted, in order to mange the disease. The key word is manage. The general consensus is that lupus is genetic; and being adopted only complicates the process. I'm open to any thoughts, ideas, or recommendations because... This is my life on the line. Again, lupus won't kill me. It'll probably be pneumonia, the flu, or something of the sort. But I'll be sticking around for the long term. Because as my mom once said...

"If you don't keep moving forward, then what's the point?"

a million thanks, and even more love. 



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