Posted by: hockeygrl1 | May 10, 2011

World Lupus Day – What It Means To Me

I want to start by saying a big thank you to all of you that wore purple today. It means the world to me. All the support is great and I hope we can spread more awareness and hopefully persuade our government to give more funding to find medications and a cure.

I’ve been struggling with lupus since my diagnosis in October 2007. I think I would be further along in my treatment if I was diagnosed sooner. I know I’ve been showing signs since my teenage years, but lupus never came up. There were many times the doctors thought I had mono because of how much I slept. I have to laugh at it now because there was a reason for all my sleep. It was the same reason I had high blood pressure at age 25 and aches and pains all over.

Lupus is hard to diagnose and I don’t think doctors like to think it could be a life changing disease. I went to doctors regularly with complaints. I know now that the pain in my back and side was pancreatitus brought on by lupus. My doctor says this is rare. I don’t blame any of my doctors. they are good at their job. It all is because lupus imitates other illnesses.

There are so many things that can go wrong  when your immune system turns on its self. I imagine a little war going on inside me when I explain what lupus is. I see my cells that should be protecting my body and attacking foreign bodies going after healthy tissues in my kidneys, joints, and pancreas. Those organs are holding up the white flag yelling, “we’re on your side.”

My body is its own enemy right now. To stop these actions, I take medications to suppress this effect. In turn, it makes my body less able to fight off infection. That’s why I avoid public places. Germs are everywhere and I catch everything. Anytime my kids are sick I have to use some of my energy to sanitize everything. Lysol is my friend as well as bleach and hand sanitizer.

Everyone that wore purple today really has touched me. Purple isn’t only the color for lupus, it’s my favorite color. I haven’t had too many good things happen lately and this has touched me deeply. I appreciate the support and love and hope it makes a difference in more ways, other than just touching me.

Thank you all!!!

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