1) This is huge. The Rheumatoid Patient Foundation (RPF) is presenting an exhibit in the Exhibit Hall.
2) I’m speaking with two other RPF volunteers in a session on Tuesday afternoon about patient engagement.
3) We have two poster abstracts we are presenting Tuesday morning. MUCH more on that soon – including links to view the posters!
There’s much anticipation because of all the exciting work before us. And a little jet lag from crossing three time zones. My simple goals:
1) To get more sleep tonight
We’ll see how I do this time…
When I travel, I usually vanish during the trip and while I’m recovering afterward. I don’t want to disappear. Every time, I determine to do better – to tweet and post photos or short blogs about the amazing things that are happening or what we learned.
I’ve never tried to fall off the grid – it just happens. It’s just so hard to travel and participate in meetings, that I can’t do anything else at the same time. At the end of the day, it’s all I can do to wash up, take meds, and get in bed. Sometimes, I can’t even do all that. There’s just no strength in my hands or neck to type. So, over the next week while I’m in San Diego, you’ll read a couple of important blog posts that I’ve already finished for you.
Peek into my private world
When traveling, I take medications on schedule, and rest whenever possible, and take my shoes off. Yet, at the end of a day of moving around, the inflammation is sometimes so high that it’s hard to move at all. I remember one night like that at a meeting of rheumatology investigators. It was bizarre to have expert doctors all around, and be so bad off. On top of usual fever and joint pain, my left hand hurt so bad all day I couldn’t move it or stand to have it touched (I’m left handed). I tried to attend a dinner, and accidentally let out a scream when my hand brushed against the table. Needless to say, we left. My hand had swelled up much so I couldn’t even undress that night. Just took more pain meds and slept in my clothes.
LIKE I ALWAYS DO, I’M HOPING IT WILL BE EASIER this time.
NOTE: DID YOU GET YOUR RAW SPEAR NEWSLETTER THIS WEEK? CLICK HERE TO SIGN UP! It’s a personal letter from me and a couple news updates from behind the scenes. Be sure to add firstname.lastname@example.org to your email address book to ensure delivery.
Postblog: Is it impossible to “tell the truth” about this disease and still sound cheerful? I don’t think it’s impossible to be cheerful, but just maybe to sound cheerful. RD is a negative disease… Is there a positive disease? Two years ago, I explained how hard it can be and had the nerve to record it and put it on YouTube. If I think about too long, I’d probably take it down for embarrassment. But it needs to be there, so I leave it. (See below).
- Alice Goes to Jacksonville: Mayo Clinic Center for Social Media
- Helping the Healthcare World Understand Rheumatoid Disease
- Use Your Words to Speak Life