10 years

February 18th, 2003

4:00am – Pain shoots down my left leg. Pain so bad it jolts me awake. Ugh, I only have 45 more minutes to sleep, annoyed that whatever this is has woken me before my early morning practice alarm. I take four Advil and try to go back to sleep.

5:15am – I dive into the icy pool. My arms feel strong this morning, but the pain in my leg increases with every kick, every flip turn. I keep swimming, focusing on my pull and technique rather than my lagging speed, trying to ignore the sharp pain shooting from my left hip.

7:30am- Finally, it’s over. I casually glide over to the wall ladder as the last to exit the pool. I stand slowly as my teammates rush out of the fog to the warmer water of the showers. It’s 100 meters back to the locker room, but it feels like 100 miles.

8:00am- Thank god, a chair. I’ve never been so happy to sit down in my entire life. I’m exhausted from the pain which has yet to subside. “Kristin what did {insert random psychologist here} say about {random psychology theory}?” Huh? Oh crap, someone noticed I’m not concentrating. I spout off some bs answer that seems to satisfy my teacher for now and go back to questioning this agonizing pain.

10:30am- Two classes down, I can’t finish this day. I hobble my way over to the nurses office. How nice would it be to be 18 and call myself out of school right now. I finally reach a parental unit and say I’m sick and need to go home. I hold back tears as I walk across campus to my car, grimacing with every stair. Why do we have so many damn stairs at this school? What if someone legitimately had a wheelchair? They couldn’t go to school here.

11:00am- I’m back in bed. The house is quiet and empty as I cry myself to sleep.

1:00pm- “What’s wrong?” my mother asks when she gets home. Pain!!! pins and needles, shooting pain, I can’t walk, I can barely move.

2:00pm- Coach I have the flu, I won’t be back for afternoon practice. A lie I know, but how else do I describe this? I didn’t fall. Nothing is broken. I was sleeping when this started. How tell someone “I injured myself sleeping.” That just sounds dumb and pathetic.

I barely eat the rest of the day. I don’t touch my homework or even watch tv. I stay in my bed, drifting between sleeping and sobbing as the pain refuses to let up.

That was ten years ago today. That’s remember it in detail. The next few months are a haze. I remember many different doctors but only the neurologist visit in detail. X-rays, MRIs, CAT scans, electrotherapy, blood tests. Practices skipped, races forfeited. I was quieter, kept to myself more, rarely socialized. I was in pain, tired, and depressed.

I don’t remember when they said “you have lupus.” I don’t remember looking into the disease in detail or questioning the diagnosis. The only thing I remember is I’m not crazy. There is something wrong, a doctor even says so.

The past ten years have been full of ups and downs to say the least. It’s sad that I can’t look back on this day and say “I beat this.” Lupus is something I struggle with every day. But, no matter how horrible I feel, no matter how many doctors appointments and tests I still have to suffer through, no matter how much medicine I have to take, no matter how grim the outcome looks, I’ll get through it. I have to right? No matter how hard it is I have to remind myself, this is the hand I’ve been dealt, so I have to deal and keep fighting.

I do long for the days when I’ll have energy again. When I can look in the mirror and not see the exhaustion and pain. When I can have a full week without being reminded of my illness. When I can workout on consecutive days and even swim 1,000 yards again.  When I can have a nice meal and a glass of wine without worrying about how I’ll feel the next day. When I can go to the beach without my skin breaking out in a rash or skiing without my joints locking up. I long for the day when I can feel like I once did. Maybe in another 10 years.

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2 thoughts on “10 years

  1. Hi my name is Diana and I am a lupie. I was diagnosed in January of 2009. I am still trying to accept that I have this disease and am trying my best to live with it. Right now I am in remission but I am scared of having a flare again because the last one i had was very bad. Yes I struggle everyday but I try to take it one day at a time.

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