so much to tell

My apologies for not posting last month. As most of you know, I lost my father. I feel like I woke up on March 5th, walked around in a daze...and POOF! 30 days elapsed. Needless to say, I behind on everything in life. Mostly I am attempting to take care of my mother. My sister and I are assuring at least for a while that she is not alone at night. We are taking turns staying with her. It seems crazy to some, but I would not have it any other way. After all not only did she care for me the first 30 years of my life, but especially the last 4 years when I was so sick. Now, it is my turn.

I am doing my best to balance my life at home, with my life at my moms. I feel like I am living in two worlds at the moment. But jumping around and being so needed is probably what is getting me through this incredibly difficult time. That said, I have a lot on my plate and I am going to have to get focused and quickly.

My medical is still a mess. In the middle of our family crisis, Chris ended up writing a check directly to the company managing his employer's medical. This seemed to fix the problem. On the April 1st, he called back just to make sure that the insurance was paid...this time by his employer. The company called him back on the 2nd and told him that when he made the payment online, he basically opted out of the company medical and onto a Cobra. And, because we didn't make a payment on the first, we are not only not going to be insured through his work, but are also no longer eligible for Cobra. So, we have called in the big guns. I am no longer able to handle this myself. As a transplant patient, I am on medicare, but this means I loose my kidney doctor who has been there since the beginning, and my entire post transplant team. This really almost pushed me over the edge.

I had to prioritize last month, and just taking care of the funeral and family was a full time job. Now that I am beginning to poke my head out into the world again, I feel like I am getting bombarded from every angle.

Hours after I found out about medical, and the fact that Chris' employer wasn't going to help at all with the issue (like pay the medical) I got a call from social security. The good news is they are now looking at my appeal from the end of 2004 - 2005. The bad news is they were calling to tell me that they had not heard from my lawyer. The short story is by law social security can not talk to me directly as I have a lawyer, they must talk to the lawyer. But since they don't have the appropriate paperwork signed by me and the lawyer, they found a loophole. So, they called me and let me know that after numerous calls to my lawyer, whose entire practice is to work with social security, social security had never heard back. Money well spent....NOT!

Lastly, it has been in discussion for a long time, that my husband would start his own teaching school. Well, we have decided now is the time. We were actually out with my father the night before he passed away, and he convinced us to move forward. We had been having initial discussions with people and just made the decision to move ahead. Chris and I thought long and hard and realized that my father would be sad if we didn't push forward, so that is what we are trying to do. As my mother owned her own business, I am well aware of what that means. I am petrified of the hard work and uncertainty that lies ahead, but I am confident in the product...my husband. He is an amazing teacher.

So now I am off to re prioritize my life. Each day I need to sit down and figure out where the biggest fire is. Do I have all my medications? Does my son need some time, What do I need to do at my moms? Do I have to contact social security, my lawyer, my long term disability insurance company? Do I need a kidney test? How am I feeling... I just hope by the end of tomorrow, I have Kaiser again.

This last week was full of tears. In the middle of my crisis, my sister, niece and I went to my fathers grave and sat with him. We put a Sharks flag up next to where his headstone will be (when it gets in). It really gave me clarity. I am trying to put one foot in front of the other, put the people most important in my life first, and take care of business.

I found a new link about my disease. I liked it, so I am adding it.
http://rarediseases.about.com/cs/iganephropathy/a/042002.htm

Cath