Sunday, August 3, 2014

The Scars

"Easy," my new doctor, the rheumatologist said, placing the stethoscope again on my chest, "your heart is racing. Take it easy!"

That was right before he told me I had lupus. And that for 20 years the disease had spared my organs, although there was extensive scarring around my heart and my lungs. Twenty years. Untreated. My blood vessels feeding the major organs of my body had been flaring up for years, and I was still alive. The prognosis was good.

"Low level lupus." That was what the doctor called it.  I googled it later on and couldn't find it anywhere. There's mild, there's severe. Low level...low level that has me gasping for air sometimes and wincing in pain as I rub my chest. Low level that scarred the engine and transmission of my body. Low level that has had me in constant pain for years. Imagine high level.

It would be a week tomorrow since I was in that office, where my heart raised wildly and I clenched my fists and I took deep breaths so I would not burst into tears. Crying is something I don't do. But I did take the next day off. I needed some time to process this new diagnosis in my life.

Just a week before, while sitting in heavy traffic, I found myself frustrated at how tired I was.  I was angry at myself for feeling drained and exhausted, especially since I had to go to my second and third jobs and wouldn't be home until much later that evening.  It was always this way since college and every doctor ignored me. Waves of sudden exhaustion, my body trembling in fatigue. My hair would fall. The soles of my feet would be filled with red, painful bumps. And then I would feel like I'm tingling, like I'm buzzing.

I laid in bed that night and said, " goes my body buzz-zing all overrrr!"

My husband shook his head. There was not much he could do married to a living cartoon. "You want me to get you something?"

And then, of course, I find out through discussions and forums that this buzzing was one of the signs of a flare up. Lupus. The very word is foreign. How can something that's been my companion for the past 20 years be so unfamiliar?

Serositis.  It's the specific kind that goes after your heart and lungs.

And so, I took advantage of this all week at work. Whenever I forgot something, or made a mistake, I sighed dramatically, "What do you people expect? I have scars on my heart and lungs!" And I don't think my staff knew what to do except chuckle, then shake their heads.  Early this year, all they've heard me say was, "What do you people expect? I'm forty!" And now it's been replaced by something much more sinister, but exclaimed in the same ridiculous manner.  I made sure during First Aid training, that all the teachers in my room knew how to administer CPR. And I raised an eyebrow, "Anyone who doesn't pay attention will get fired. You people need to keep me alive." More chuckles across the room and declarations of, "Miss Anna Marie, you're not going to die! Such a drama queen!"

Only once, only once this past week have I broken down and cried. And only for a minute.  I told my husband, "All this time I've taken pride in never being sick and something so much more sinister was happening inside me." And then, just like that, the tears fell.

I think I cried really because I've been told that I now have to listen to my body. I cannot drive it to the ground. I have to rest when it's tired. I no longer can skip lunch and dinner. I had to let go of my afternoon jobs...and then, the hardest of all: I must try not to be stressed.  The very idea of not being stressed stresses me out.

I thought immediately of the traffic, the slow cashier, the teenager in a Mustang changing lanes without signal, the hairdresser speaking about me in Chinese...the everyday stuff that stresses the (bleep) out of me. I'm never, ever going to be able to do it!

But really, I am grateful and I have nothing to complain about. I think, 20 years...imagine what they could have discovered by now? What my body has been through...God has surely spared me. If scars around my important organs are the only things to show for after 2 decades, then I have much to be thankful for. And then I think of my son, my Aaron who has lived with diabetes before he was even 2 years old. The most calm, well adjusted child battling the meanest autoimmune disease.

I cannot complain.

But I can ask for prayer. Prayer from you, my blog friends, to ask the good Lord to keep me healthy. Prayer that I learn how to read the signs and to listen to my body.  And to do the miraculous: stay stress free while living and breathing in this great demanding city.