Disability Woes

The last couple of weeks have been pretty tough. I am still struggling with headaches and sleeplessness, but I have had a ton of support from Chris and I have really been able to just take care of myself. I have been working with the trainer twice a week as well as trying to do a little cardio on my own. I can't bounce very much or my various incision sites begin to hurt. So I walk briskly up stairs, or ride a stationary bike. I am still trying to get my heart rate up, even if I can't run. I am so tired after, I usually crash. After nights of not sleeping, I really enjoy the naps. But, it is going to be a slow recovery. After not doing anything but laying around the last 4 years, I have a lot of work in front of me. I am so excited to get back to my old life. I am ready. I look forward to swimming, skiing, and running again. It is my priority to get myself back in shape for both Donovan and all those who cared for me when I was sick.

I have been spending a lot of time on my disability. I just can't believe the irony of our current disability system. I have to spend time talking with long term disability, disability lawyers, filling out disability paper work, in medical offices filling out paperwork in relation to my transplant, and visiting the local social security office. It truly is a full time job to balance every thing that has to be done to keep my disability checks coming, and my medical from being cancelled. No one wants to insure a kidney transplant patient. We are expensive the rest of our lives. People are asking when I am going back to work. I think it would happen a lot faster if all of this would go away. Anyone who truly is disabled can not do this alone. I consider myself a pretty competent person...and this takes so much time. I wonder about others, who don't' have the education or the support I do. Who is there to help them? How do they expect someone who is unable to work or take care of him/herself to deal with all of this! I think the whole system needs to be revamped. I will have Barack put this on his to do list. I am sure it will be right after the economy, terrorism, national health care and international relations (Sudan, Israel, North Korea, Afghanistan). I think he is going to be too busy for a while.

Another hoop to jump through this month is to move from UCSF to Kaiser SF. It has been 3 months since my transplant and at the 3 months I transfer from the UCSF transplant team to the Kaiser transplant/transition team. Although UCSF will be in charge of the overall function of my new kidney, Kaiser will take over the regular appointments and blood work. I seem to have been lost between the two. I am working on straightening that out. Putting that on my to do list..

Sorry if you haven't heard from me. All of this paperwork has been so overwhelming. Donovan's birthday is Tuesday. (I can't believe my baby is turning 4.) We are taking him to Disneyland. I am trying to get everything settled so I don't spend the day on the phone..instead of with my son.

Write with an update soon!
Catherine