Thank you so much for sharing your story with us. You are truly a remarkable and yes, special human being. My husband's Mom has Rheumatoid Arthritis, but has only known for about five or six years, but she has days that she can't get out of bed and says that nobody could realize that it even hurts to be touched. I truly admire the both of you.
I'm so honored to have been able to take a "peek" into your world, as you say.
You are one heck of a writer, and ya know laughter is the best medicine, though I am no-one to talk, since I've not endured the pain you have. When my dd has time, I'm going to have her sit down here and read your book, she is in college, and is an ordinary "teen", and needs a good dose of your writing. It will be good for her to see this, as she "used" to do art herself and gave it up, to hang with the college kids.
When I look back on my life so far, growing up and my childhood experiences, I cannot help but smile. I certainly did not have a “normal” childhood, but really, what is normal? It was normal to me. I knew I was a little different because I couldn’t always do what my friends did, and I missed quite a bit of school due to doctor appointments. Then one summer day when I was about seven, I was jumping on a trampoline with Tracy and Jodie when Tracy asked why I couldn’t bounce on my knees like they did. Truth is, I didn’t really know why, except for the tremendous pain I would feel if I did. The inquisitive mind of a peer sparked many thoughts and questions of my own. Mostly “Why? Why can’t I run like the other kids? Why can’t I sit on my knees? Why can’t I wear those cute little wooden clogs like all my friends?” But mostly, “Why me?”
I remember, as if it were yesterday, lying in my bed one night ready to be tucked in. My mom was sitting on the edge of my bed, my blue Care Bear comforter pulled up to my shoulders, and I asked her for the first time, “Why do I have arthritis and why am I different from the other kids?” I don’t know if she remembers this or not, maybe it was one of those responses parents give when they are caught off guard, but she told me it was because I was special. She said that God had chosen me to have this disease because he knew I was strong and could overcome it. My response as a seven year old; “Well, I don’t want to be special, or strong, so I will just tell God I don’t want it anymore.” Aaahhh, if it were only that easy. I don’t remember much more from that conversation except that I do recall my mom had to explain to me that I really didn’t have a choice and that she knew I could do this. She told me that God had a plan and that I was a strong little girl. I believe that the greatest strength that God gave me, was my sense of humor. Being able to laugh at myself and my situations makes the hard times bearable.
Four years old, is quite a young age to be diagnosed with Juvenile Rheumatoid Arthritis, but being so young, I never knew anything different. There have been some incredibly hard times, mostly through my 20’s, but I have coped. I’m very much an out of sight, out of mind person when it comes to pain, so looking back at my experiences has been an eye opener now that I am older. When things are better for me physically, I forget what I deal with when they aren’t so great. I realize how easy it is to take being able to lift a cup of tea to my lips for granted. Thus, I have created this album to share my experiences with this disease and am doing so in a light hearted way, because frankly some of it is down right funny, at least to me. So please enjoy your peek into my world!
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January 11, 2015
November 04, 2006
April 27, 2005
April 12, 2005
April 11, 2005
February 28, 2005
February 08, 2005
February 07, 2005
February 07, 2005
February 07, 2005