Going On

Challenges...we face them everyday.  For most people, "challenges" consist of dealing with difficult people at work or trying to juggle the kid's soccer practice with important business meetings.  For those of us with lupus, challenges can come in the form of just getting out of bed in the morning, finding the strength to hold onto your toothbrush, taking the ten to fifteen minutes every week to fill up the medicine box and trying to remember which pills go where so you don't overdose yourself.  I've dealth with these challenges for several years now, but because the doctor's could not figure out what was wrong with me, I eventually told myself that it was all in my head.  Funny how "mind over matter" just doesn't work when something is really wrong with you.  Now that I know what is wrong with me...I wonder if I would have been better off not knowing.  Ironically, I used to joke around with my friends in high school by saying, "I would rather live my life, enjoy it, and die young not knowing what was wrong, than be diagnosed with something and spend the rest of my life trying to 'save' it."  Ahhh...life has a funny way of playing jokes on us.  So...now I know what is wrong with me...and I must face the challenges...as we all must.

The last few days have been particularly trying for me.  I experienced my first true flare up about three weeks ago in reaction to an antibiotic the doctor had given to me for a UTI.  I was crippled for three days and could not move my legs.  The pain was so intense I started to throw up.  That was the moment I realized how serious this condition is.  The flare up has come and gone and has worsened yet again in the last four days.  This time, it's settled in my wrists and the timing could not be worse.  They've moved to the back of the restaurant at work to "lighten" my work load, but to be honest, it is proving to be a much more physically stressful job.  I can't afford to not work right now, so I keep my mouth shut.  I feel so overwhelmed with all of the medication that I'm now taking...I can only work a restricted schedule and my pay has been reduced to about $400-$500 a month.  That barely covers my medication, monthly hospital bills, and my half of rent.  I feel so guiltly as my ever so patient boyfriend works himself sick.  I'm quickly running out of options as my condition seems to be worsening and if I have to file for disability at age twenty one, I think the rest of my self confidence will go out the window.  I feel like I'm barely holding myself together as it is.  The steriods make me cranky and have caused me to gain about twenty pounds.  It's not really that big of deal, considering that I have been fifteen to twenty pounds underweight since high school...but for someone who struggled with anorexia for five years...it's been a battle in my mind.  I've started to work out, but as sick as I've been, it's difficult to keep up with it. 

My mind has been playing the worst tricks on me.  The last two days, I've even started thinking that the doctor's trying to kill me with all of the meds and I have to talk myself into taking them.  Is this just all part of the acceptance part of this?  Everything just hurts but the meds make such a miniscule difference, I just don't see the point.  I hate to watch my boyfriend do all of the work while I sit at home and struggle to just do every day house work.  My friends want to go hang out, but I don't have the energy to.  They just don't ask anymore.  People at work talk about the "lupus girl" right in front of me like I'm not even there.  "She's used to being sick, she'll be fine."  "You can't do such and such because we can't afford for you to die right now."  I joke around about it too sometimes...what else am I supposed to do?  Most of the time, I just stand there and smile...like a good girl. 

The pain, the frustrations, the medicines, the depression, the unknown, the fear...these are the challenges we face.  No one else can understand them.  It's as if the flu and cancer hooked up and had a demon child...and we can just hope and pray that someday, someone will find a cure.  Until then, we go on.  

For now, my goals are simple...make it through it each day...don't worry about tomorrow...it's all in God's good timing.  I hope that someday...someone will hear my story, and the story of other's...and find the strength that they need to get through one more night, one more pill, one more doctor's appointment.  If I can inspire one person, then this struggle is worth it.