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

Greetings from Cancer Camp!

Hey oh! This is DotCom (my camp nickname), coming to you live from First Descents Surfing Trip in North Carolina. Our fearless leader, Pita, asked if I'd mind writing up a paragaph or two on my first couple of days here at Cancer Camp. As they (and you) all know by now, brevity ain't the Berg's (or the Com's) game, but I will desperately try to fill you in on what this experience is like, and why it is so important for cancer patients to connect with each other.

In case you don't know about First Descents, it's an awesome organization out of Denver, CO that brings young adult cancer survivors on outdoor trips. (Rich readers: Give them all your money so we can keep coming back, because First Descents is awesome. Also can I borrow five dollars?) The trips range from surfing to rock climbing to kayaking, in an ever-growing list of beautiful places both here and abroad.

Although I'd been encouraged by friends for years to go on an FD trip, I was hesitant to come on this trip for a variety of reasons: I'm lazy and was afraid I'd suck at the physical challenges; I was afraid my cancer wasn't legit enough to come; I was terrified the ultra-healthy menu didn't include Entenman's Pop 'Ems and Evan Williams whiskey.

But I should not have feared. This experience is one I had to have.
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On Saturday, our first night here, our lovely camp counselors asked us to write down our first impressions of the trip. The literal first thought I had when we were all together around the dining table, all fourteen of us was: CANCER!

Everyone here at First Descents Surf Camp in Nags Head, North Carolina has totally had cancer.

That was my literal first impression.

It's not a keen one. Duh, we all have or had cancer. But this was the first time I'd been around such a large group of young adults facing serious health and lifestyle endangerment due to illness. I have a host of friends, but their worst ailment is an STD or nine. (JUST KIDDING! They all have healthy sex parts.)

This was gratifying but scary too: my cancer was relatively easy in comparison and I felt like I was taking advantage. But then I remembered all them other diseases and relaxed: this wasn't a one up game. And there's been a real shortage of whining about our shitty luck and failed immune systems. In fact I've only heard myself, but ONLY because I stubbed my toe jumping in our backyard pool and it really hurts.

The kid gloves are off; there's no prompting us to share our feelings or even what type of cancer we had, which prevents a lot of the little known cancer game: My Stage Is Worse Than Your Stage. Illness can make us self-centered and insecure, but this retreat encourages us, very subtly to listen to each other, and find ourselves through our cancer similarities.

Simply put, it's organic and natural, just like the hippie dippy almond milk they serve us.
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We've only had one day of activity so far, but the challenges are very real and about to be amped up in about 15 minutes when we hit the ocean for surf lessons. I was thinking about my own exercise attempts as of late--running and hiking after years of laying down and eating those Pop 'Ems in bed--and how the pain is almost like a drug to me. It's something I created because I was willing to challenge my body to do something productive.

It's a choice we are all making this week. Our bodies are not perfect. They have failed us in very big and real ways. But the value in challenging us to live beyond that, and to share and connect with each other in real and meaningful and silly ways, is immeasurable.

And so, so necessary.
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Check out First Descent's web page to learn more about the organization. And definitely go on a trip if you are able to! Thanks, FD!
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