Monday July 13,2009

Good Morning! I am looking for the sunrise as we speak! People look as illness as weakness, I look at it as a challenge. Look at everyone who criticized Michael Jackson, yet it all made sense, the color change, why the children may not be biologically his, why he died of cardiovascular disease. Although the medications that were not to leave operating rooms is questionable. They may have found all those medications but doesn't mean that he took them all at the same time. DLE Discoid Lupus Erythematosus later develops into Systemic Lupus Erthematosus. I hope that people are now more aware of the effects of this horrendous disease. It is painful and unseen by the naked eye. We often come to judge. I am very public about things because I want people to be educated and learn, however there are drawbacks. I remember the day when my friend called me and at the time I had been misdiagnosed with Multiple Sclerosis, and said, Sarah hows the MS. I felt so saddened and labeled. I felt as though I was no longer a person but a disease. People have to understand that Lupus effects individuals very differently. People with Lupus can live happy productive lives, others have more complications. I hope that all who read this are educated enough to do some extra research. Photosensitive is a huge issue, the sun! It triggers fevers, pain and other issues. That is how we came across mine. You can go into remission. I hope that people learn not to ass/u/me things right off the bat. He obviously did not want people to know and was a very private person. Unfortunately, I wish he would have come forth for more exposure and knowledge on the subject. Many successful people deal with illness but are scared to come forth due to people's ignorance. Something to think about, if you hear something, the best way to educate yourself is look it up.

I hope through this tragedy that people can come together and start doing more research and giving to more to the Lupus Foundation. I see people give abundantly to the Cancer Society or to other society's but there are other illnesses that need to be addressed as well. I am lucky because I am educated and I am strong. I eat well, I have an amazing medical team and don't nearly have the severity of Lupus that others have. I have my days, but at least I am here. I have spent many years in question and suffering but it has just made me a better person. My medications are limited, my energy needs to be used sparely at times, but I have no doubt I will live a happy fulfilling life. There is no shame in being sick, it is not my fault, it is no ones fault. It is time for people to come together and be grateful and help others.

I pray we get the sun today that I will see the sun rise. I had a dream last night. It was a dream that all my family was together, eating together at our old home. I woke up this morning as though I was in my old room thinking I slept through dinner and everyone was putting away the dishes. I realized no, this is my new life, the life of just a few. Tragedy hit my family like a tornado, My Aunt's fiance killed himself, my grandfather died in a cabin that was my family friends for years in his sleep the night before he was to come home with my uncle. My uncle died of liver disease, my Aunt whom I was close to died of Cancer, my Step-father died of Waldenstroms macroglobulinemia (a very rare disease), my grandmother died of a heart attack, my cousin died in a motorcycle accident. Yes so there was no family dinner to wake up too. I see now trying to peek out, the sun of course. I have my music playing James blunt shes beautiful.

I say this not to be gloomy but to realize what it is I want out of life. I am no different than any one else. I have hopes and dreams. To walk across the beach with someone I love with my shoes in my hand, to go sailing. To someday have a summer house. To try something new that I never thought I would. To go on a family vacation. To be there when my niece and nephew experience the ocean. To build sand castles with them. As Will Smith said in Seven Pounds "to live life abundantly." One lesson out of everything is we shouldn't take life for granted and enjoy each day to the best of our ability, every sunrise and every sunset. Everyone have a great day and make sure to enjoy something today! Enjoy the music, because it makes everything just feel great!

Love,

Sarah

"Laugh often, long and loud. Laugh until you gasp for breath. And if you have a friend who makes you laugh, spend lots and lots of time with them." Unkown

"I have enjoyed life a lot more by saying yes than saying no." Richard Branson

"You will do foolish things, but do them with Enthusiasm." Colette