Friday, December 13, 2013

An Update

The photo taken back in April about 24 hours before an infection almost took my life. This has been an incredible year with some tremendous highs and some pretty bad lows. An artist that has become a rather good friend shared the idea of periodically writing about dealing with a chronic illness, appears several writers have done this. The fight and worry about health insurance was met with bitter sweet news this morning. I have now been shoved into the over burdened Medicaid system here in Kentucky which with our already shaky budget could potentially bankrupt our stay and eventually change what services may be covered. Happy? Not really...Simply more pressure to try and put myself in the healthiest position possible before any potential crash and yes this is the point where I ask for your help.
I am going in the hospital either today or the 21st with either my gallbladder, spleen or both scheduled for removal. Normally this is routine surgery but with advanced liver disease this is serious. Both "organs" have direct ties to the liver and work as part of the filtering system in your body. I don't think about my mortality. Many people are under the assumption a new liver is all you need and if you can not get one in your state then simply move to another one. It is not that simple...A new liver is not a cure. Lou Reed picked up a new liver and was dead in five months. Liver disease is very individualistic and it does not play favorites. The good thing being when you finally shut down, you shut down fast but hard.
Having Medicaid raises my chances for disability but there will be no decision for another 90 days or so. I am still faced with incredible high pharmacy bills and potential transplant patients do not get a free ride on Medicaid, if anything you are kept on maintenance and you never really have the fighting chance to improve. I am a fighter. I don't look to exist, I look to live otherwise I welcome the end of a brutal disease that sucks the life out of you physically, mentally, and spiritually keep fighting.
I can not begin to thank you enough for your donations. It all helps and all goes into my well being to be a better position to fight the good fight. This is a huge push right now and up till Christmas. Anything you can do helps. 20 dollars is in some cases one pharmacy bill, one of the 17 pills I take at any one time. Please share this, challenge yourself and just one friend to help or share. Group funding is just that, it takes a lot of people with a lot of small donations to make big things happen. You can not cure me. You can not cure liver disease. You can make a difference.
God Bless,