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A Word to the New People (and the Old People)

Posted: Fri Apr 07, 2017 1:20 pm
by Julie YW
I haven't been here for awhile. It's always a little shocking to see all the new names. I feel for those of you who are relatively recently diagnosed. I want to tell you all not to panic, that you have time. Many of us have been managing with active disease for a long time. I often think how I envy people who are diagnosed now. The landscape of research and science is so vastly different from what it was when I was diagnosed. You have standard treatments which will hopefully buy you a lot of time and then there are trials.

I'm on my third experimental treatment and still going. I feel like an old veteran now. For those who have been at it for awhile, I know you can relate -- I'm tired. I honestly don't know how I keep going. A part of me welcomes death. That's what my latest blog post is about -- the newest trial and being tired.

https://julieyipwilliams.wordpress.com/ ... paralysis/

For those who are new, I write a blog that's pretty honest, maybe too honest for those who are new to this. I found it really helpful to read the blogs of those who had gone before me. So check it out if you think it might be useful. People tell me I voice what they can't express and that helps them feel less alone.

Re: A Word to the New People (and the Old People)

Posted: Fri Apr 07, 2017 7:05 pm
by KElizabeth
Thanks for sharing. I'm tired too, but going forward always.

Re: A Word to the New People (and the Old People)

Posted: Sat Apr 08, 2017 12:27 am
by Steph20021
Julie I love your blog and always read the minute I get my email,notification that you've posted. Your latest blog brought me to near tears. I was on the edge of my seat wondering if you would still elect to do the trial given the risk or not. I am not sure what I would do in your shoes but I hope I'd be as brave as you are. I am rooting for you and wondering when you will have your first scan to check on the progress. Wishing you all the best, always. Thanks for sharing. You have a beautiful way with words. But honestly, your account of how rough immunotherapy is, came to me as quite a shock. It's the first account I've read that makes it sound so painful and horrible. Love your honesty.

Re: A Word to the New People (and the Old People)

Posted: Thu Apr 20, 2017 6:52 pm
by LPL
Hi Julie YW,

My 1st language is not English, and even if it was I'm sure I could never find good enough words to express how grateful I am that you posted a link to your Blog. I clicked on that link, could not stop reading and read all your Blog posts.
I have so much respect for you and I want to Thank You So Much for being so honest in your writing - it feels as your words have changed me. Whishing with all my heart for You that the Experimental ongoing treatments will help and will be less tiring as they continue.