Let me start off saying I'm so glad I found cure4lupus.org. The other story's made me want to tell my own long struggles with lupus.
I am a 45 year old mom of 8 children. Four boys and four girls from the ages of 28-12. I'm also a gammie to 3 grandsons ages 12,3/12 and 2.Two granddaughters age 3/12 and 3 months. My family is the reason I fight everyday to get out of bed and keep going.I want to see my grandchildren grow and have families of their own.
When I was a teenager I seemed to be sick and in pain all the time. The Dr's told my parents it was all in my head, no one my age could be sick and hurt like I did. I've always had a bad reaction to the sun. Burning badly and having sores where ever the sun hit my uncovered body. But there again the Dr's said I was so fare complected that we should keep me out of the direct sun.
As I became older and had children my pain grew as well. I was always sick with a cold or a "bug" had urinary tract infections and bones that broke much easier than most people. I changed Dr's faster than the weather in Oklahoma does. No one would listen to me that the pain meds done absolutely nothing for me. So what would they do? Yep they upped the pain meds even more.
Now in 2003 I broke my neck lifting weights in a gym. So here we go more meds and now surgery on my neck. That took over a year for me to heal and get back on my feet again. And in July 2005 I broke my neck where the Dr had fixed so another surgery and more meds. More Dr's trying to see if they can find why I'm not healing and back to what they call "normal." I assure you I have never been 'normal" a day in my life.
I went on in pain day in, day out for 5 more years this whole time my family sticking by me and helping with everyday chores and life in general. No one wanting to say out loud that maybe just maybe my wife,mom,daughter,sister is a hypochondriac. I know they had to be thinking it because I damn sure was. I thought I was going out of my mind. I looked around at family and friends that were my age and none of them were falling apart like I was. I tried to go on acting like nothing was wrong but my body was screaming at me that there was something seriously wrong! My life had become nothing. All I wanted to do was lay around and do nothing. I had always been a go getter liking to ride horses, camp, fish, and hunt. Go dirt bike ridding and ride on the Harley, but now nope nothing worked for me. I couldn't even get up out of the chair by myself. Hell I couldn't even wash my own hair anymore.
So lets jumped all the way forward to present date. I have found a Rheumatologist that my husband and I both like and trust. An Internist that we both know shoots straight with us and a pain management Dr that is great. BUT I'm still NOT well. Every morning I open my eyes and think to myself "Self! We are good today and we will NOT let SLE rule our day!" 98% of the time SLE slaps me and says "Really! ya think so??". I just keep pushing and praying for something, anything to help me. I am a fighter. Always have been and always will be. Give up,give in, quit not one of those are an option to me. Now some days yes, yes I do stay in bed and try to forget the world is still moving around me. But only if the pain is so bad that I can not put any weight on my hips or knees. Only if I can't raise my arms to put my own shirt on will I allow myself to stay in the bed.
I don't know when there will be a cure for SLE. Don't know if it will even be in my life time but I do believe they will find it and until then, I just keep on keepin on. I'm not saying that I'm all that please don't take it that way. I was just raised to face what you have and go on with your life. Never back down and be as strong as God allows you to be.
17668 I St., Omaha, NE 68135
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