Wednesday, April 6, 2011

Dear Lupus: You don't have to go home, but you can't stay here.

­I think I’ve earned the right to joke about lupus, about dealing with Lupus, about lupus medications, treatments and basically all things associated with lupus. Why do I think this? Well, as you may have guessed, I have lupus. Systemic Lupus Erythematosus to be exact and one serious bout with lupus nephritis. Since 1995 my life has been altered in a way I never would have chosen, but then again, I wouldn’t necessarily change it if I could either.

Without going into lengthy detail, I’ve been stiff, swollen, tired, nauseous, poked, prodded, injected, rejected, dizzy, hospitalized, traumatized, broken hearted, depressed, suppressed, frustrated, weak, overweight, forgetful and full of roid rage. These coupled with enduring multiple kidney biopsies, pericarditis, pleurisy, chemotherapy and a doctor who thought it was “all in my head”, in my opinion gives me the green light to make light, of what can be at times, a very dark existence.

While it’s never been in my nature to wallow in self-pity, I will admit I’ve asked the heavens more than once “why is this happening to me?”.  Not in any melodramatic fashion, just a simple question with no real answer, simple or otherwise. At various times, usually the more serious times in my medical history, I would revisit this question. One time after mulling it over for a while, I came to the conclusion that of all my mother’s four children, I am the only one who could handle the by products that come with lupus with any shred of dignity. Those bullies (read: loving siblings) that tied me up in the basement, used me as a gopher for their every whim, teased me, made false claims against me and never let me lose sight of my “middle child” status, actually prepared me for the sucker punch life had in store. They toughened me up and to quote my oldest sister and worst offender, “built character” and for that, and many other reasons, I love those wimps.

However, when I realized that the “My Siblings are Sissies” theory was really just suppressed childhood anger, I began to wonder again. It became more of a search for a scientific reason than for any spiritual one. Would all my years of drinking diet soda with aspertame do me in? Was it because I got that really bad sunburn every summer?  Too much tuna?  Was my hometown on Long Island a lupus black hole? Who knows why and does it even really matter? Truthfully, it depended on the day. 

After many years and "seasoning" in the art of managing lupus, believe it or not, I did come to terms with an acceptable answer to "Why Me?" about 4 years ago and there was no science behind it. I'll get to that later though...

Before I delve into the most personal nooks and crannies of my life with you through blog posts, allow me to introduce who I've become over these last 15 years. I'm a wife, a mother, a full time graphic designer, a part time entrepreneur and most importantly, as confirmed at my last check-up, HEALTHY. I love my family, they crack me up. My father is the funniest person I know.  I love to laugh, but am often too serious and can keep a secret like nobody's business. My diet is mostly vegetarian, but I'm not a nut about it and fear not, I don't preach. I eat right (most of the time) and exercise (most of the time). I have no time to be sick, I'm very busy planning my next adventure. So there you have it...that's me. 

I have no real plan for these blog posts, they will be in no particular order nor will they appear on a particular day. The first few will likely be about my LONG road to a diagnosis. I can't promise you'll laugh or cry or even be inspired. All I can promise is that they will be honest, detailed and probably riddled with sarcasm and my own special formula for humor...which I hope you find palatable. If you have lupus or know someone who does, I will bet you'll be able to relate to me on some level. That's all I hope for really, for someone to be able to relate. Fifteen years ago, I had no idea what lupus was. Not many people did. I was young, terrified, felt branded and broken. Books I read advised me to mourn life as I knew it and start a new, less active, less stressful one with few hopes and fewer dreams. It seemed at the time I was being encouraged to surrender to this beast, take the lashings when they came and be thankful if I lived through the pain. $#@* THAT! I could not and would not relate to this mentality and subsequent course for my life. So I felt very alone despite a great support system. Unlike cancer or parkinson's there was no lupus hero to look to for inspiration and affirmation that it will be alright.  Oh how I wanted one then.

Call it genetics, stubbornness or denial, but I found a very different way to deal (read: fight) with lupus that works exceptionally well for me. I hope you can relate. 

If you got this thanks for reading!


  1. hallelujah! a halfway composed fb message is open in another tab ... as i keep reading more blog entries...i relate. and i especially relate to ... '&^%$ THAT!" - eileen