Whatever floats your boat...

The e-Patient Movement

How social networking can help us to save our own lives. --> e-Patients Website

:o)

Comment by SydTheSkeptic on June 30, 2011 at 11:51am: Amy, is a site like this helpful to you NOW?

Comment by BlancheNoE on June 30, 2011 at 5:59pm: Unfortunately, not so much. I do go online once a week to see if I can find anything new on PCLD and I will continue to check. *I* could be of help to a site like this if I had the time and energy. Right now it's taking everything I got just to do my reduced work schedule. I'm trying to accept that I will have to go on disability.

It just sucks that I will be forced to lose everything I've worked for in my career of almost 14 years before I will be "cured". It's not necessarily like that for all medical problems, it's just the nature of *my* disease.

My doctors keep telling me that I'm not dying yet, it just FEELS like I am. Fuck. See ? I don't even want to talk about it,...so I will end this "comment" by saying I am truly blessed with the friends, family and husband that I have. I REALLY chose well in my close relationships. I have also gotten to experience truly amazing and wonderful adventures in my life and I am determined to get a new liver so I can have still more of them.

Thank you, dear Syd.

*love*

Comment by BlancheNoE on June 30, 2011 at 6:12pm: OOps. shit. I accidentally deleted my first comment that said (roughly) if I had the internet when I was 19 I would have KNOWN I had liver trouble and would have demanded an ultrasound.

I could have avoided all the stuff that makes my liver worse such as coffee, chocolate, estrogen (the pill), soy, cows milk, etc. etc.

I may have never even needed to have a transplant because I could have kept it in check with diet alone. Once it gets to the stage it is now, there is no reversing it,...at least they haven't found anything yet.
We already tried the Octreotide,..didn't work on me.

Comment by NatureJunkie on July 1, 2011 at 7:21pm: As usual, Syd, you've cherry-picked the best of TED for me. The sites he mentions sound like gold mines of good info. One of my co-workers was diagnosed with brain cancer on Monday. I'm going to send a link to this video to his wife. I think she might find it helpful.