A year ago, I started noticing that my skin would burn faster than everyone elses. Since I've been a diagnosed SLE patient for eight or nine years, the sensitivity didn't really surprise me. But, I could've never anticipated just how life altering that seemingly small issue would become. When you are diagnosed with something like SLE, you tend to think about all of the organs it could attack and the pain that it causes. Of particular concern to us were my kidneys and heart. I think, for a while, we got quite myopic. Without really knowing exactly when or how it started, we started noticing the burnt skin and crappy immune system. Because those weren't things we really planned for, we did what most people do when you run into a problem of that scope and nature: we put coping mechanisms in place. I stopped going outside or in public. And, when even that wasn't doing the job - I started living out of one room in the house. We put up plywood and dark curtains. I stopped participating in things outside of this home and, eventually, outside of this room.
Then you all came along and did what we didn't have the time or courage to do - try to find a new tool for the coping arsenal.
I didn't realize just how deeply entrenched in my disease I was until today, when Steve finished the front of the house and moved to my bat cave. Since he was working in here, with all the blinds open, I had to go in the living room. It was awkward. I haven't spent more than five daylight minutes in there for months. Today, I was out there for hours. It was physically liberating and glorious...but, emotionally, very strange. Logic told me that I was safe, but I was anxious. When you spend a year avoiding something, it's very hard to shake those habits and fears to let your guard down and enjoy. But, I was out there. And, it was amazing.
When Steve finished the bedroom, I walked in and got teary-eyed. For the first time in a year, I could see my backyard from my room. The blinds were open. The heavy curtains were down. And, I wasn't burning. I feel like it's not my room. LOL Everytime I walk in from another room, I do this strange double take. Strange is good.
It's you (yeah, you!) I have to thank for this. You, my readers and friends. You've done more than just donate some cash: You've given me a part of my life back that I thought was gone. You've given me my house back. And, most importantly, you've given my children a hands-on mom again. :) I played DDR for an hour. LOL I noticed that, without the UV burning, I had more energy. It was so much fun. THANK YOU. We may be cat-like in our independence, but this effort proves that atheists can, and DO, join forces for the good of their fellow man. And, to the theists who I know donated - thank you for seeing past our ecuminical differences and helping your fellow man. *GIANT HUGS TO ALL*