It's been a few days...

Hi Everyone,

I guess a lot of people update their blogs everyday, but I don't think I will be able to keep up with that pace. Lets see, the first and last time I wrote, I think I was telling you a little about myself. So, I will continue down that road...other than being a wife and my great love of creating artwork, I am also waiting for a liver transplant. I was diagnosed about 15 years ago with a very rare liver disease called Primary Sclerosing Cholangitis. Since that time I have had 11 surgeries and countless hospital stays. I was also diagnosed with Crohns which I think originally caused me more problems in the beginning than my liver disease. But about a year and a half ago my liver went into failure and I am now in end stage liver failure and waiting for a liver transplant.

Over the years I have learned so much on so many different levels. One of my main goals is to help bring change to our Health Care System (incorrectly named, if you ask me). I have seen it from many different sides, I have had health insurance and not had coverage. Currently I am covered by 2 health insurance companies, which you would think would cover me the best, but I have run into so many problems....I was almost a part of Michael Moore's movie "Sicko" which I highly recommend everyone sees. I believe what chronically and critically ill people have to go through (dealing with health insurance companies) actually adds to our illness and suffering.

I have not been able to very much with this dream of mine, since I have been sick but, it is one of my goals that I continue to work on (only on a much smaller level). I do not want other people to have to go through what I am going through right now. The amount of red tape that I have to deal with on a weekly basis is just stupid. I cannot tell you how many times, someone sitting behind a desk (who has never met me or seen what I have gone through) has made the decision whether or not I get the care my doctor has recommended for me. I cannot tell you how many times I have had to send in appeal after appeal, just to get a test done that my doctor needs for me. I cannot tell you how many times I have had to have my doctors send in extra letters or make calls (to argue with the doctors hired by the insurance companies) just to get my medication. I don't know how my story will help to change things, I only know it will, so I continue to do the small things (vote, write my Congress Reps. and Senate Reps.) next my story goes to the Insurance Commissioner of CA. Once I am stronger, my voice will be stronger and I will do more to help bring about change.

Next time I write I will tell about my wonderful support system...my husband, my family, my friends, my community and people I don't even know around the world who are keeping me in their prayers.

Love & Light,
Stacey