I put together these highly unreadable graphics to simply highlight the illnesses I am dealing with. Most of oh understand this, but I've had some troubles over the last week or so with several people accusing me of being lazy, trying to milk the system, feeling sorry for myself and being a drain on society.
I shouldn't have to justify that with a response but I will because I've led a very productive and incredible life up until now. I put myself through college and grad school myself, I've worked my entire adult life except for a few years I took to raise my kids, and I worked under difficult circumstances with very young disabled children which was physically demanding. I was on my kids school's PTA, I started a chess club that's was so popular we had to open a new space for it. I've raised money to bury my sons friend who died, collected furniture from multiple donors for a family in need who were having a baby. I taught CCD. I chaperoned every field trip. I homeschooled my children when it was clear they weren't having real success learning in school. And that's just the tip of the iceberg. But I'm not special, I'm just like all of you who have done and are doing these same things every day. I did all those things and always made every meal and kept the house as well as all types of tasks that we just take for granted. I did it happily for my family and I was always full of energy, being team mom for football and soccer and lacrosse and karate. Like all of you, I was THERE.
Now, I am sick. I never expected to ever be like this. I loved my life and worked hard but I loved every minute of it. I would give anything to be that person again. But I can't. And you would think that people who've known me and knew all I've done and known the enthusiasm and energy I had every day in support of my family would know better than to call me lazy and unmotivated. But with four major illnesses, all of which became 1000X worse when my husband left, I don't know what to do anymore but crawl across these hot coals that are my life to get to the other side and hope to GOD that at the end of this challenge there is relief for me so that j may return to being the woman I used to be.
My body hurts every day; my brain is a terribly frightening place. Sometimes I don't understand what's happening to me. I have memory loss and actual brain damage. I have severe joint degeneration and will need to have my neck, shoulder, other hip and both knees replaced at some point. And lupus is ravaging my organs, especially my kidneys. I'm afraid. I'm afraid I will never get my life back and that I'll never get to be that person again, but I'm trying each day to make even small steps forward. One thing is certain, I will NEVER STOP FIGHTING. I have days where I think I want to kill myself, more often than anyone would ever believe. But I fight it. So to the few who think that I am LAZY, I challenge you to spend one day living my life and let me know how lazy I am. It is possible to live a good life with these debilitating diseases but have to fight hard every day for it. Because if that, i have incredible compassion for other's pain. So don't think this is all about me, it's about all of us who suffer and are judged by those who are on the outside thinking they have the right to judge. LAZY is the last thing I would call anyone who has to fight their body every single day.
