So, the medical issue has resolved itself...sort of. After hours of phone calls and multiple letters, Chris and I switched to a cobra. I can not depend on someone else as my medical is too important. While I was dealing with my fear of losing my medical, I went to the doctor and filled all my prescriptions...just in case. (I had this HUGE bag of medication. There were over 20 bottles of medication. If we were pulled over, I would have had a lot of explaining to do.) But, I got it all for under $200. If I lost my medical, I saw on the receipt, that the Cellcept alone would be $4200 a month. Did I mention the transplant alone was 500K..So, I had no choice but to take the control of my medical back. I just am so glad to get that off my list of things to worry about.
Now, on to more pressing issues. I am trying to work out the social security/lawyer dispute! I just don't know who to listen to. Social security wants a list of every doctor appointment I had from December 04 to September 05. This is very strange since I have already sent my complete medical file to both them and my lawyer and I filled out the same paperwork they are requesting March of 07. Not to mention for at least 8 weeks during that time period I was in the hospital and I had multiple surgical procedures. I called my lawyer yesterday questioning the reasons behind the dates of the doctors visits they were asking for as they did not match the dates we are appealing. I also asked why they wanted information they already had (they being both the lawyer and social security). Of course my lawyer called me back the following day when I was in with the trainer. It is so frustrating. Since Social Security said I had to have the information to them by the 17th, I have to get this issue solved by tomorrow. I feel like I am in a bad remake of "Groundhog Day". Instead of living the same day over and over in a boring town, I am living the same paperwork over and over with the same useless "help", Knowing at the end, I will wake up the next day with no more money, no more information and no more help than the day before. It is beyond frustrating. It feels like every day is a reminder of the problems with our country's medical and social security systems. I think about it all the time, and I don't know what the answer is. It is just bizarre that someone who has been healthy and worked since 15 struggles to get a program/service that she paid for her whole life. I wonder how it is for others who do not have the education or support I do. Our system is full of red tape and paperwork. It is a disaster. I just hope we come up with a better system for the generations to come.
I am tired, so more later. For now, I am off to be sad about the Sharks first playoff game. I never take playoff losses well, and without my father to discuss the game with..I am just going to go to sleep. (I hope)
Cath
Friday, April 17, 2009
Monday, April 6, 2009
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
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
Subscribe to:
Posts (Atom)
