6/28/12

Life with Lupus

I'm often asked what it's like to have lupus. I never really know what to say, so I've drawn up this daily timeline to illustrate a day with Captain L. (That's lupus. It's captain of my hot bod.) Next time someone asks, I can be all "CHECK KELLY-BERGIN.COM, YO!)

9am: My alarm goes off but I hit snooze for the next hour. Lupus patients often feel worse in the morning.



10: I get up and take my thyroid replacement. This is actually due to the cancer I had, but hey, we're all friends here.

10:02: I attempt to get up to quell the raging river in my bladder. I'm too young for Depends!



10:04: I start coaxing my body to get out of bed. "Come on, pal. If we get up now, we can have Berry Berry Kix for breakfast! No Kashi!"


10:06: I swing my legs over the side of the bed and attempt to stand. It looks eerily like this:



10:08: Finally, my body relents and I walk to the bathroom. I'm not sure how to put this other than it feels like running in a pile of mud, sand or snow. My legs are often swollen and the fluid prevents an easy gait. Also, I'm just naturally spastic.




10:11: I brush my teeth but because of my mouth sores, it feels like someone is pouring salt or baking soda into the tiny holes into my gums. I punch the walls in anger and then slump dramatically to the floor, a technique learned from watching many Lifetime movies when home sick as a child.




10-Whenever: I work from home (usually my bed) while allowing myself my one cup of coffee a day. Because lupus tends to aggravate my drug-induced diabetes, I try to stay away from too much caffeine.




4pm: Time for my daily exercise. I spent a good part of my years not exercising, only to find that when I did, I was MIRACULOUSLY better! Unfortunately, I'm still not what you'd call "in shape", so my runs tend to look like this, except better dressed:



6-2am: I eat a well-balanced meal of cereal and/or healthy food, depending on who's cooking and where I happen to be living at the moment. Here in NJ, my parents eat dinner like normal human beings, so I am treated to real food! It's glorious, guys! Move home! Be like me! SEE HOW NICE YOUR HAIR WILL BE!



I've cut back a lot on the drinking because it was making me into an insane person and aggravating my Multiple Diseases, so I try to avoid distractions. Luckily, that's easy when you're living at home and your parents have CABLE!!! What a treat.


2am-4am: These are the dark hours, when I pray for sleep. Because I take prednisone (a steroid that stops lupus from attacking my body), my brain doesn't like sleep...at all. The drug amps me up, causes anxiety and generally rips my body apart. I've been healthier lately and have tried to ease off the Evil Drug, but it still blows. Here's what my 2am tends to look like:


4am: I tend to fall asleep around this time if I'm having a particularly unlucky night. I say prayers to Whomever and then count the things I'm grateful for, which are a lot of things these days. And then, an easy slumber.



And that, dear friends, is a typical day with lupus/cancer/weird immunodisorder. It's not that bad, really. I always say: a girl can get used to anything. (Including unlimited supplies of candy buttons. Get on that.)

Love,
kb

9 comments:

  1. this is awesome

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  2. So sad but the pictures were very funny! You need to write a funny book!

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  3. This s great, I've been getting treated for RA. For 2 years,, nothing working so my doc did blood work and BAM. Lupus...so back to infusions , pred, " the devil "" I hate the fatigue and my " everything" that's connected to something hurts, I've been a hair designer for 30 years now I will be going part time,, I don't know. What to say. I love your analogy

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