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Prey for a Wolf
Topics: medical, neighbors, Lupus, SLE - Systematic Lupus Erythematosus, Plaquenil
Posted by britgal Mon Jun 9, 2008 11:11:10 PDT
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General fatigue, joint pain, tingling fingers and toes, and more fatigue had become a part of daily life for me. I'd just turned thirty and had switched primary schools to a more demanding campus, so I figured that was the root of my problem. Having a fantastic husband, I had offers of massages most nights, but my body was too sore to handle the touch. I received comments about the bags under my eyes, because suddenly I was an expert on 3am broadcasts. Even my eight-year-old students remarked on my sluggish, achy movements in class. Having endured this for nearly six months or so, I decided to visit my doctor. After blood tests and a consultation one week later, I was informed that I had SLE - Systematic Lupus Erythematosus. Leaving with a handful of prescriptions and pamphlets, I spent that evening researching this autoimmune disease I'd never even heard of, a silent one that strikes women in their childbearing years.

It has been one year since that day in May, and it has been a long year filled with ups and downs - medically, physically, and emotionally. The first three to four months of taking Plaquenil (the most common Lupus medication) were traumatic on my body - severe nausea, insomnia, loss of appetite, and headaches that felt like a hammer against my skull. The symptoms didn't seem to get any easier until that fall. I was fortunate that I began taking the drugs at the beginning of summer; I don't know how I could have been a successful teacher going through that physical nightmare.

Once I started back to work, it was extremely difficult to get going in the morning: my body had morphed into Frankenstein's and getting ready was a drawn-out chore. Not to mention the fact that I now had breathing issues; simply getting out of bed took my breath away. At work, I discovered a new side effect: my memory was zapped, which was quite embarrassing at times.

To me, the pain is like a ping pong ball. My left shoulder and elbow pain nearly brings me to tears, yet the next week they'll feel fine, but my right foot and neck are plotting my slow torture. Then, the light will clear for a day before the pain strikes again elsewhere. This is a never-ending cycle. What makes it most difficult is that the pain is invisible, the fatigue is ghostly - had it been an open wound or a broken bone, I may have been more understood or sympathized by others. But when they can't see it for themselves, it suddenly becomes, "Yeah, I'm tired too...." NO! You're not tired like me, and you'll never understand unless you've experienced it firsthand.

Lupus has become a word I highly dislike, especially as I'm finding out if I want to have children, it will creep into my life through that crack as well. It's as though you can't escape this disease, it follows you everywhere, stalking you, pouncing when you think it's finally been put to sleep. I suppose that's why "lupus" means wolf in Latin. So, where can I buy a wolf trap??

I hope this helps my NW neighbors understand Lupus a bit better!

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Comment From: sunnica

Thank you, Jen, for sharing your story. I think too many people suffer from Lupus with too little information. I will be praying for you, as I know your church home at Olive Drive is, too. xxx ~D. Comment From: britgal

Thanks, Dana - I really appreciate your prayers!