Bad blogger

I have become a bad blogger.
Not that i don’t have things to say…..but i dont have the energy to write them.

For the few of you who actually still read this, thank you for caring.
I will be up to my ass in alligators for the next while…and wont have much time to blog.

My partner of 18 years has finally got some answers after 5 years of seriously deteriorating health.
She is looking at a double transplant of both kidney and liver. We have just about finished a months worth of tests, about 75 hours worth of hospital visits, and after the last 2 tests, she will be listed on the transplant list. From that moment on we wait (which seems like all we have done for 5 years, but….)

Her health continues to deteriorate. She has had to give up her job, and will be applying for disability. I will cover her job until the major event is over, so she can maintain some health insurance. Currently medication bills are hundreds of dollars a month, plus co-pays for the many many doctor visits, and our finances are a mess. the fact that her mental capacities are being affected by the underlying illnesses, which makes life complex at best. I haven’t been able to secure employment for myself, but keep applying for jobs. I have to admit that currently being the medical advocate is more my full time job. Right now life is one step at a time, trying to keep spirits up and energies up. We will have to begin to scale things back soon…the bills are getting away from us.

Families are an interesting study at the moment….her mom has decided she is going to die, and blames everyone with a level of anger that is not appropriate. her father is being supportive for the most part, but is continuously trying to draw her into the souring relationship with her mother. her sister who has lived her own life away from all has gotten it into her head that she can find a donor (not even viable now with the double transplant). my mother, when she is rational, is very supportive. the children….have their own lives.

I should be more excited about the possibility of transplant, but right now its just another whole process where things can be screwed up, and then of course there are the after/side effects that they have to tell you about. Like $2-8k for drugs per month for life, 3x per week blood tests eventually weaning down to never less than once a month, the fact that all the anti-rejection drugs have wicked side effects, including destruction of the new kidney…which means that dialysis will be a part of the future. All of this, plus the bottom line is there are no guarantees. Well of course not, there are NO GUARANTEES in life itself, but it sure would be nice to have something after all that hassle.

Right now i vacillate between being overwhelmed, feeling really bad for her, feeling really bad for myself, or being in caretaker/advocate mode. The safest place to explore my feelings is in writing, but the last thing i want is for my blog to become someplace where i have my pity parties, and honestly right now that is all i can feel, along with the fear.

So until i can be a better blogger, i will go silent here for a while.

Hopefully I can come back and actually contribute something.

~ by Cris on May 31, 2008.