User:	alice
Website:
AIM:

I realized that it's time that I write something here.
I am a physician, but also a real patient.
(or at least so it seems for now).

my encounter with my illness, but also with the physicians that took care of me, brought with it a lot of questions, and also some hope for making some changes, in a positive way.

when I started writing a book, I was told that it would be wise to change the names of the people involved, so that no one will be personally offended by my criticism. I thought that was a good idea, but then realized that if I give my real name and a few more details it will be quite easy to figure it out. so, living in the world of alice, for such a long time, it was just natural to use the name älice caroll, and this became my name here for the same reasons.

in retrospect, my illness began 20 years ago, as a "medical student's disease". I have to admit that I don't remember all the details, but after less then a year, I had a spontaeous remission, that left very minimal sequalae that could easily be ignored and atributed to other things.

about four years ago it returned abruptly, with a fairly rapid progression, and before I realized what was happening, I found myself in the ICU.
despite recieving multiple treatments with plasmapharesis, IVIG, steroids, Imuran, in different combinations and settings, I did not have a reasonable remission that lasted any reasonable time. (this extremely frustrating course, combined with my constantly normal SFEMG in the best hands, even made my physicians doubt my diagnosis quite a few times).

I am currently intermitently respirator dependent, and need help in many physical tasks, but decided ( after allowing myself to be depressed and even desperate for a few months),that remission or not, I am going to have the best possible life that I can.

I manged to find the way to stay away from the hospital (as a patient), by having all the support that I need at home. ( actually turning my house, with the help of an interior designer, my rehab physician and pulmonologist, and some of our hard earned money, and the tax return that I recieved after being given 100% dissability, into one of the best private hospitals, fully suited for my specific needs) and to gradually get back to the hospital ( as a physician), with the amazing support from my colleauge and family.
and the trust of my patients.

my story is not a story of success or failure. it is a story of success and failure, hope and despair, moments of joy and moments of sadness. just like I believe any true life story is.

and this is the way I hope it will continue to be.