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Kinslie's Story
I struggle with everyday things that most people take for granted – I’m still on all my medication, not to mention all the hard core pain pills I’ve become addicted to along the way. I had missed a lot of school since I had been diagnosis with this terrible non-curable disease. Teachers and principals, counselors and friends didn’t understand. Finally I had to get a social worker from the CCH to send a letter to them to explain everything. Once they received this letter, my mom had to go in front of a committee with the board of education so that I could be placed on a plan that allowed special treatment with kids who had chronic illnesses. In school, I was very active before all of this. I was a cheerleader, ran track, ski club, was a gymnast and a swimmer….now I’m lucky to get in the shower and go to college. I’m a freshman at WVSU which happens to be close by my home; otherwise, I wouldn’t be able to go to college. I’m planning on obtaining a degree in elementary education with a focus on special needs children. I do have a wonderful boy friend that is very supportive of me and my illness. My family (mainly my mom) has been my stronghold. Without her and her support and encouragement, it’s hard to tell where I’d be.
Along with the SLE and JRA I also have fibromyalgia, and hyper-mobility, chronic fatigue, anemia, rash, Raynauds, nephritis, and central nervous system involvement, IBS, insomnia, serious depression, anxiety, and thanks to some of the medication I was given in the hospital, bouts with hallucination. At this young age, I consider myself to be a total mess. But my family and my faith keep me strong. I will survive this – I refuse to give in, not yet – NOT EVER! My advice to you is “Keep the Faith because “The task ahead of us is never as great as the POWER behind us”.
In Christ, Kinslie Mattox Hurricane, WV |
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Hello
and May God bless each of you. My name is Kinslie Mattox and I was
diagnosed with SLE and Rheumatoid Arthritis in late 2004-2005 at the
young age of 14. Like most of you, I didn’t know what was going on.
All I knew was that I was sick and in terrible pain. I had gone to my
local ER thinking that I just had the flu. According to their findings,
I had a serious case of the flu. They sent me home and told me to get
plenty of rest, drink plenty of fluids and if things got worse within
the next 24 hours, or if the feelings I was experiencing persisted, to
follow up with my family doctor. Needless to say, I didn’t get better
and had to see my family doctor. At this point, a few days after my ER
visit I was still throwing up, running a high fever and was so very
weak. My joints had begun to swell to an abnormal size and the rash on
my face wouldn’t go away (I just assumed it was from the high grade
fever, or at least that’s what my mom thought). It was all I could do
to get out of the bed to go to the doctor. Had it not been for my mom
being there to help me through all of this, I don’t know where I’d be
today. She had to turn me in the bed, she brushed my teeth for me,
brushed my hair, helped me in and out of the bath tub and with anything
else I needed help doing. I couldn’t even walk without crying. As soon
as my family doctor saw me, he knew this wasn’t the flu – he was sure of
that. Off to the hospital I went for extensive testing. Results were
back in less than 24 hours. LUPUS and JRA was the reading. He sent me
to a specialist. My knees were so bad that he had to start steroid
injections my first visit and few after that too – nothing was helping,
not even the Methotrexate (sp) he put me on along with other drugs, such
as the dreaded prednisone, etc. He finally decided that with me being
so young, Charleston WV didn’t offer Juvenile Rheumatologists, so off to
Cincinnati Ohio I went. When I got there and was seen by the specialist
– immediately he admitted me to the Cincinnati Children’s Hospital (CCH,
A wonderful place) for 7 long days. Test after test after test. Teams
of specialists in and out of my room – they were bound and determined to
help me. I had just about every medical procedure done possible. The
scope down the throat (because I couldn’t swallow) – biopsy’s on my
kidneys – you name it, I had it. 