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My Friend Lupus (From My Father’s Perspective)

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I got a friend of mine inside of my body, and his name is Lupus. He hit me just as I turned 59 during December 2004. When he calls on me, my body and I talk.

We have long heated arguments, sometimes they last for hours and sometimes they last for seconds. At the end we usually make up and agree to disagree, and then go our separate ways. I’m gonna take you through my day, as if you were me, to understand how this works.

You see when he came, he started off by making a merry-go-round of my head. The doorway to the hall and the stairs looked like it was on the other side of the bedroom. The doorway to the bathroom looked like it was in the place of the doorway to the hall and stairs, and the dresser looked like it was rolling towards the hallway. I’d close my eyes for a few moments and clear my head just enough to see my stash of pills on it and grab them before he made the world spin around again.

Now Lupus is pretty good about letting me see what instructions I have on the medicine bottles, but today my vision has gotten blurry. The mixture of white and light blue all seem mixed together forming some kind of gooey liquid that’s almost like Mylanta. The text of my instructions seems harder to read. I squint and squint and squint. Finally putting the pills in my mouth, I grab a small blue cup of water that sits on the dresser. I take a sip, and in shock realize its own my urine. Lupus has a way of surprising the bladder glands and giving few chances for you to relieve yourself in the toilet.

You would think that because I am near my bathroom in this bedroom I have, Lupus would let me get there so that I could take these pills to finish the argument he has with my body. I grab my cane with the pills still in my mouth and balance myself with sure and slow steps towards the bathroom. Halfway there, Lupus decides that he is feeling ignored and suddenly shuts down my right knee. I stand in one place at this point, too far from the bed and dresser, and still too far from the bathroom. The pills still sit in my mouth, so I wait.

Minutes and minutes go by; I don’t even look at the clock any more. Still standing in the same place I was in a while ago, I try again to make even smaller steps towards the door. Lupus lets up on my right knee and decides he would simply just take my hearing instead. All I want is to get these pills down with the small blue cup that I see as I get closer to the door. I hold on to the doorknob to give myself a boost inside. I see the cup finally, but it is filled with baking soda.

I sit on the toilet seat trying within limited reach to clean this cup as best I can so that I can take these pills. A few of them slip back into my throat as I finish with the last rinse of the cup. I fill it quickly with water and bring it halfway to my lips when Lupus decides to make my hand spill it all over the floor. I take a towel to wipe it all up while trying to remain calm; Lupus will mess with my stomach next. Sure enough, the burps come up from there to my throat. I take the cup again and fill it with just enough to get the pills down and drink it as fast as I can before throwing the cup into the sink in exhaustion. Lupus still wants to argue with my body, and so again makes my stomach burp and burp some more.

I prop myself up again almost slipping to the floor but able to stand thanks to the cane. I walk towards the door, but I look back into the mirror. I see that my friend Lupus has made a butterfly design all around my eyes. My eyes feel and look like their shrinking in size, and my skin feels like it’s turning to rubber. I turn away, not really thinking about it, but not really wanting to know anymore. Now the real test is getting downstairs.

The stairs seem like a long road to nowhere as I descend down, and again the position changes as I try to stand straight. I feel as if they are moving away from the door to the living room and more towards the other side of the house, then they feel as if they are going back in the other direction until ultimately the stairs remain in their proper place towards the front and living room doors. Now I can hear the inside of my chest beating at a thousand miles per minute for a few seconds, and then suddenly slowing down. I can barely keep my eyes open, but I have to in order to get to the first floor.

I get to the final steps, making it slowly towards the couch where I collapse into a deep coma for at least 15-20 seconds. Sometimes I don’t remember what happened, but it pretty much ends up the same way; bedridden and vulnerable to the slightest aliment. Who knows? Maybe tomorrow Lupus will let me go out and play, but right now it wants to stay in. That means I have to stay in.

Could you go with my friend Lupus today and play with him? I’m sure he’d like the company; he’ll treat you the same as he would treat me. I don’t know; maybe he’ll like you better.

Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys.

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About Matthew Milam

  • Lupus can be pretty devastating – and it certainly seems so from reading this piece. I was tested for Lupus a few years back, and though the actual diagnosis of Fibromyalgia isn’t a picnic – I do consider myself very lucky.

  • I have lupus myself. I was diagnosed a little less than a year ago. I’m not sure if it’s the debilitating affects of the disease or the fact I have such a disease that makes me feel like I’m fighting a war I can’t win.