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.