"THRIVER is an emotionally searing novel...that readers will love."
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Why long sleeved shirts are sexy - and all the other questions I don't mind answering about my disease
July 24, 2014
"Aren't you hot in that?"
It's a question I get a lot. And, to be fair, NO ONE ever wears long sleeves in the broiling desert summers of my hometown. Except me. I wear long sleeves and long pants all day long. Every day. Only in the dark hours do I dare to don tank tops and shorts. So, the simple answer is, "Yes. I'm hot, but I don't have any other choice."
Well, it's not because I find it sexy. No, I wear these clothes (most of them moisture wicking athletic wear and khakis or loose skirts) because I have lupus. And, when you have lupus, the sun makes you sick. Anywhere from horribly itchy rashes to barftastic headaches, UV light can cost me quite a few enjoyable hours if I'm not extremely careful - and sometimes even when I am. So, I wear sunscreen and clothing with lots of coverage. When I have to be in the sun for more than a few minutes at a time, hats and huge umbrellas become part of my outfit as well.
"What the heck is lupus? And why do you have a handicapped placard when you don't look handicapped or sick at all?"
Oh, boy. These are my favorite questions, but not because I don't like answering them. I love being able to educate people about what some call the "invisible disease."
Lupus is an autoimmune disease - that means, basically, that my immune system is so strong (and so bloody confused) that it often attacks me, rather than foreign invaders. Any tissue in my body is at risk, from brain to heart to kidneys to stomach and beyond. Lupus can be very difficult to diagnose (it took four years in my case) because it can present in so many different ways for each person. Even in my own body, lupus can show up one way this week and another the next. Today, my central nervous system (mostly my brain) might be a wreck and my eyes will swell shut. Tomorrow, my stomach and intestines may throw such a huge fit, I can't go anywhere more than twenty seconds from a toilet, but my brain (and eyes) will be just fine.
As to the second question, I have a handicapped placard because I am permanently disabled. Yes, I am able to walk without assistance. Some days, I can even walk a blazing four miles an hour. But, on other days, I hobble around, almost crippled by arthritis (which, again, can dissipate overnight or remain for weeks).
My biggest need for the placard is simple - those crappy days.
With five abdominal surgeries in the last seven years, adhesions and scar tissue are a huge problem for me. On good days, my inflammation dies down, and I hurt very little. On not-so-good days, inflammation rocks my world and has me walking around like a ninety year old lady with severe osteoporosis. (Also, I will remind you that, for me, the sun can be killer. Even a few minutes spent walking to a building in direct summer sunlight can knock me out for the rest of the day. My husband has "emergency" meals stashed all over the house for days like that.)
Oh, and as for not looking sick...yeah, well, I try really hard not to. I work my butt off every day to not look as old as I feel. It's a thing for me. I'm in my thirties, damn it. I refuse to look like I'm dead before I really am. Plus, I'm a really good actress.
"Ohmygosh! How do you live like that - never knowing if you're going to be well from one day to the next?"
Simple. I LIVE. And I love my life. I've got a great husband who hasn't abandoned me. (That's a huge problem for many women with my disease. And I say "women" because 90% of people with lupus are female.) I've got great children who understand my disease. They've never known me as a healthy woman - I first got sick when they were 1 and 3 - and they couldn't be more sympathetic and helpful. I'm truly blessed. Sure, there are people in my life (family or friends) who don't get what I deal with on a day to day basis, but they don't matter. They don't control my happiness. They are not the ones in charge of making me smile. I do that. I'm the one that chooses to stand up and live my life, even when it hurts. Some days, when I just can't get up to help my kids with their homework, it sucks. Most days, though, I CAN do those things. Or at least force myself to. And isn't that what life is about in the first place? Making it a point to show up when and where you can, to the best of your ability?
I'm not saying it's easy. In fact, life is really hard for me most days, but I've got good insurance that pays a lot of money for me to have good drugs. I was able to have children. My husband makes enough money that my being unable to work hasn't bankrupted us (although it came close once or twice). These are luxuries most people don't have, so I try to be grateful. I know I'm lucky in life, even with this crappy card I've been dealt. Because, really, that's all it is. ONE card in my hand of many. Do I get jealous when I see other mothers/women my age and all the things their bodies can do that mine no longer can? Sure. Sometimes, I get downright pissed. But I always try to slap myself out of it. I can't see what goes on in their homes. For all I know, their lives, their suffering, may be much worse than mine.
"So, what was the point of your rambling here?"
Dang. I don't know. I've forgotten already. Or maybe it's just that my disease sucks. It really, really sucks, but MY LIFE DOESN'T. I've got love. I've got hope. I AM ALIVE. And, after almost dying twice in the last seven years, that's enough. For today, that's all I need. Well, that and my long-sleeved shirts and khaki pants...
(That's me at my kids' baseball game. And, yes, the heat was stifling. :-)
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