Wednesday, April 22, 2009

Pain is relative...

I thought I was dying. The truth of the matter is that I really could have.

Each day was a new chapter in pain. I would wake up and announce my Ailment du Jour. "I think my ankle is broken." Impossible, of course, because it wasn't broken before I went to bed. "I can't use my hands today." This sounds crazy, I know, but some days my fingers just didn't work. My husband would have to help me get dressed and buckle my seat belt. My wrists wouldn't even allow me to hold a coffee cup. And then there were the days when my temperature would soar to 104+ for no apparent reason. No flu. No virus. Just me, shaking uncontrollably, wondering why my body had betrayed me. My hair was falling out and I could barely stay awake from the fatigue. I would wake up at night drenched in sweat as if I had been sprayed with a garden hose. Yep, I'm dying.

The doctors were puzzled as well. Maybe it's lymphoma. The lymph node biopsy crossed that one off the list. How about a bone marrow biopsy? They were just sure it was cancer. By the way, do you know how a bone marrow biopsy works? They put you on a table face down and stick a giant needle into your hip bone to extract the marrow. Yes, people, they stick a needle into your bone. Wait, it gets even better. During my procedure, the giant needle became stuck in my bone. The doctor climbed onto the table, put her knee on my back and pulled with all her might. It was kind of like the Sword in the Stone. She must have been the chosen one because the needle eventually dislodged.

All that drama and still no diagnosis. I even had one doctor tell me I was just anorexic. That makes sense because the symptoms of anorexia are high fever, night sweats, extreme pain and weakness, right? If I had been able to make a fist, I would have punched him.

The light bulb moment came when my mom asked, "Have they tested you for lupus?" That was it! My dreadful family inheritance had come. I had one aunt who died from lupus and another who had been suffering for years with the disease. How did we miss the symptoms? Lupus runs in our family, and I was its next unfortunate victim.

Systemic Lupus Erythematosus is the proper name. My immune system can't tell the difference between a nasty, foreign invader and my healthy tissue. "Shoot first and ask questions later" seems to describe it fairly well. At this point, my entire body was under attack.

Every inch of me was inflamed - my joints, the lining of my lungs, the lining of my heart and even my blood vessels. The pain in my feet was so severe that every step I took felt like I was walking on broken glass. They pumped me full of meds trying to thwart the attack, hoping that my kidneys hadn't yet been compromised. At 25, kidney failure and a lifetime of sickness wasn't the future I expected.

So I fought back. I exercised even when the pain was excruciating. I did my best to follow a healthy diet even when my friends were eating burgers. I vowed to live as though this bitch called lupus had never found her way into my life. She picked a fight with the wrong girl.

I started winning. My medicine was slowly decreased and eventually stopped completely. The pain was negligible and the fog was lifting. The disease would not dictate my life. I will run, do backbends, take walks with my kids, and even have a glass of wine of the beach. I will do whatever I want to do. Lupus doesn't make the rules here.

I've been in remission for 10 years now. I'm sure most people who are my age feel much better than I do, but I'm also sure that I can run a half marathon in under two hours in spite of that fact. Lupus is always going to be in the background waiting for a chance to rear that ugly head again. I say go ahead if you dare. I kicked your butt once before, and I know I can do it again.


  1. You.Are.Amazing.

    And a huge inspiration.

    Thank you for sharing your life with random peeps on the internet. I cannot explain how much you've taught me.

  2. With that attitude, it wouldn't dare show back up. :-) Good for you!

  3. high five and hugs for you! Keep pushing forward and pushing that nasty lupus back!

  4. Thanks for this. All of my symptoms match up, but the blood work is inconclusive. It is so frustrating. I've even got the fun face rashes. It is good to see that it can be managed and overcome. Now if I could just get a dx, then maybe I wouldn't think I was crazy! I don't know how many doctors I've had to tell "I am not making this up". Thanks for sharing!


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