Sunday, January 1, 2012

Butterfly Brain

In the world of lupus we have this neurological disorder that is called "lupus fog", I prefer to call it a butterfly brain. Lupus mean wolf and the symbol for lupus is the butterfly which are both taken from the shape of the rash across the cheeks and nose also called a malar rash.

Which ever you choose to call it the neurological portion of lupus is the same. You forget things, its like having Alzheimer's some days. You brain plays tricks on you into fleeting thoughts much like a butterfly. You can be in the middle of a conversation and it flutters of into the highest space where you can not go. There are days when its so bad that you can literally forget that you have a cake in the oven and grab that hot pan without a pot holder. Funny instances such as opening a cupboard door and expecting a light to come on is one of my personal happenings, as is the pan.

I am sure you are wondering now why I am all of a sudden focusing my blog on my disease. The answer is simple...AWARENESS! It is a genetic disorder that affects men, women, children and it doesn't discriminate against race either!

We are all fully aware of breast cancer and how to be proactive against it; however there is no way to be proactive against Lupus. Its simply an allergy to ones own body, it sees ones organs as foreign and attacks them. I sit in a room once a month with people who have lived with lupus for many years, a husband whose wife lost her battle with it quickly after not having any "flares" in over ten years, she was taken from us in a matter of weeks; we also have new lupus patients eager for information and hope. Unfortunately the only hope is to stay comfortable, taking the medications, using 100spf sun block that doesn't help and attempting to remain stress free. How does one do that? You can't. How do you give someone hope when you feel none? You paint a smile on and remind them they aren't alone, recommend ways to de-stress, encourage them to take their meds and be their own advocate with the doctors and not take the brush off that we often see.

Another part of the neurological portion of Lupus is seizures. I have been having them since I was born, with my first gran mal seizure before I was even a year old. The details of that story are fuzzy for me today but I remember my mother telling me that I curled into a tight ball and my father tried to pry me flat with his calloused hands and he couldn't. My own mother had seizures after giving birth so back then they just figured it was the same thing. Amazing what nearly 42 years of medicine can uncover. My mother having RA and at one point in time she herself was allergic to the sun; which leads me to wonder if she has RA and Lupus as well. I don't know she won't talk to me.

On this new year day I wish you all the health and happiness for the coming year. My butterfly brain is now spiraling into oblivion and I have lost my train of thought.

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