Sleepless in San Diego
Each fall, Katie Beth and I travel to wherever the American College of Rheumatology (ACR) holds its annual scientific meeting. Last night, we arrived in San Diego.
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
2) To be able to post a couple of photos on my Facebook or Twitter.
We’ll see how I do this time…
Vanishing woman
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 newsletters@www.rawarrior.com 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).
Recommended reading
- Alice Goes to Jacksonville: Mayo Clinic Center for Social Media
- Helping the Healthcare World Understand Rheumatoid Disease
- Use Your Words to Speak Life
We hate that you are there with all those doctors and that you are suffering so much and can’t be helped! Unbelievable! If you were in a movie, this would be the time when a “hero” doctor would come forth and say he/she wants to help you….and then that doctor would come forth with a miracle cure for all that ails you!! Ah, where is Hollywood when we want it to be around?! Now…go get that needed sleep and dream that maybe tomorrow that miracle doc will show up!! (:
I think maybe we will have to grow our own “miracle” docs.
You are AMAZING! You are in my prayers for an easier time xo
No need to explain your “abscence” here. Anyone who lives with RD gets it. I’m grateful for your resilience, especially on the days I know you don’t have it as much as you would like. You are doing a great service for all of us. Thank you for all you do. You do more for me and this illness than my own family. xoxoxo
Amen!
Someone has a R.D super hero cape on this week
Kelly. I’m still getting over those two ladies at the airport that hit you with the Cain! Ladies is a nice word. Appreciate all you do. I feel ur pain from traveling. How brave you are to still travel with a fresh mentality. I’ve felt like that so many times! Almost impossible to travel by plane for me. Hope you feel better today! You always teach me something! Your expectations for travel. Rest,meds and hit the bed. Thank you for putting yourself through that for the cause. RD! Hoping you feel better today and your hand isn’t so swollen. God Bless You Judib
Hi Kelly,
I can so relate. Travel is the #1 most difficult thing I can do. Even car trips do me in. By day 2 I’m in a mega-flare, no matter what I do. I don’t understand it, because I do like you and take every precaution, including prednisone (which I don’t usually take), keeping to my regular foods, schedule, etc. My body just really really hates travel. It’s sad because I would love to travel more. As it is, every 2-3 years my family will decide to go somewhere, and I do my best, not wanting my kids to miss out, but it takes me months (yes months!) to get my travel flare under control. My thoughts are will you Kelly.
Kelly, Imagine my suprise to read this today and find you and I have one more thing in common. So far here they are:
1) our names
2) our disease
3) our handedness
4) our involvement with professionals in the business of healing us. (I work in the health insurance industry)
5)our fighting spirit
6) Our need for Answers
7) our inability to settle for less from the medical community.
Those are just the one’s I’ve noticed since finding your sight in 2008. Keep fighting and representing for us. You do a fabulous job.
Kelly
Kelly,
Don’t worry about us…you are doing such an important service for all of us with RD. Take care of yourself and do the best you can. Thank you and Katie Beth for being there and fighting for us!
Janet
Dear Janet, you’re always so sweet. But I do worry about y’all too – that’s why I do what I do.
I’m already so sore and my voice is gone – hopefully a good sleep will help. KB already asleep too. 10pm here. Time for lights out.
Last summer I took what will likely my last trip to Florida with my family, as I am finding it more dificult to travel much anymore. We were at Disneyworld, and the (I hesitate to say)lady behind us rammed into the back of my legs with her wheelchair knocking me over in the disability entrance for one of the rides. Apparently she thought I wasn’t moving fast enough. My husband and 14 year old son had to pick me up. Very embarrassing. That was the end of my day…hurt too much to keep going after that. It’s really quite unbelievable the way some people behave, even at the “happiest place on earth.”