- What is Scleroderma? (AKA "The Big S")
- The Spoon Theory
- Early Onset Symptoms
- Got Muscles? Got Weakness?
- Centromere B Antibodies - Scientific Stuff
- GI Involvement in Scleroderma
- Joint Involvement = More Severe disease. Great.......
- Fibro -My-What? Myth or Legend.....This ones for ...
Sunday, September 19, 2010
This one is short and sweet....
As you may have realized by now, one of my passions is research. I love to research medical issues (specifically the Big S), treatment options, theories, etc...
I am a nurse, although not currently working, and loved the research aspect of my job. I miss it. So now I kind of keep a binder of interesting studies, theories, etc.. to refer back to and as a journal of progress for this disease.
Well during one of my "Sclero-sessions" I came across a blog where the writer was trying to describe to a bunch of children about her disease. Her scleroderma had manifested in her hands causing the common curing and crippling we often see with this disease... although hers was systemic (as is mine) so when the children asked what the disease was doing to her body and how was she sick, she was very profound when she answered.....
"See how my hands are deformed and sick? That is what this disease is doing to my insides and organs"
Wow - What a simple, yet really profound explanation to explain why it is we don't look too sick on the outside, but are sick on the inside.
Anyway - I really liked the description and her bravery in talking about her illness and bringing awareness about the disease and allowing kids to not be afraid to ask about things they do not understand - like disease and deformity.
I guess that's all for now folks.....although I have SO MUCH catching up to do. Been really busy - but I'll tell ya why later.
May your Sunday be filled with love and laughter.