Please don’t miss the news at the end of the post! I had to put A LOT on one page since it’s been a few days!
My endocrinologist was so excited about my attending the ACR in November and winning the WebMD award in December and it’s really fun to share after being a patient there for several years! However, there is some confusion that comes from these events. Doc commented recently about being glad my RA is better so that I can do these things. Did someone forget to tell my disease?
How do I even answer such comments? Yes, with help, rest, and medication, I can sometimes go somewhere and look “normal” for a few hours. But I could not even walk sometimes in Rochester and Chicago. It was just like being in labor how I forced myself to shuffle along from seat to seat. I was in agony much of the time during those trips. It took weeks to prepare and weeks to recover. Just last week (YES, FEBRUARY!) we caught up on laundry from that time away.
Yesterday, we went to Tampa to speak to a large group of patients at a museum. It was dark in there, but I promise that was me. It was a long day, getting up at five a.m. because we had to drive across the state before the program. But it felt like a great victory to make it through the day for several reasons: It takes days of preparation for me to do something like this. Every other ball has to drop. Blog posts aren’t written. Emails aren’t answered. Calls aren’t returned. Slides are created. Facts are checked. Points are memorized. Literature is printed. The briefcase is packed. Map copied. Clothes cleaned, pressed, and laid out. Of course it was all worth it – especially finally meeting Emily and her family! And we forgot to get a photo together – when will I learn this lesson?
Katie Beth took a day off studying calculus yesterday to be aide, videographer, and driver. After the event, I shuffled with Roo around the museum a little, mostly sitting on benches. You know how it is when you force every single step? Yes I sat on the floor a few times in the gift shop because there was no seat. When we got home, I handed out my souvenirs and lay down while Katie Beth fixed us something to eat. And you guessed it – I fell asleep without dinner.
I can do this once in a while, but not as a regular pace. From my vantage point, I KNOW that we are not all the same. Some have it easier than I do. Many have it worse.
I lived about 40 years of almost normal health most of the time. I know the difference. I haven’t had a “pain-free” moment in over six years. I don’t talk about it most of the time and most people assume joints only hurt when I mention them. Apparently we get used to pain because I seldom mention pain until it passes a 7 or is affecting over a dozen joints at once. Usually, the disability concerns me more than the pain. For example I knew better than to hold the microphone with my left hand yesterday because it would cause a hand cramp in front of everyone. My right hand can’t hold it at anyway because the first two fingers don’t bend enough anymore.
It IS all worth it and I chose to do it. But wouldn’t it be great if people didn’t assume RAD is gone just because I refuse to whine about it?
A few important announcements:
Check your email!
Last month, many of you sent an email to register for a survey with Find a Cure Panel to earn a $25 donation for the Rheumatoid Patient Foundation. We’ve received notice that the survey will be sent soon by email. It is important that you fill out your survey as soon as possible and remind your friends to do likewise.
This should only take you about 15 minutes and only the first 200 entries will be accepted.
T-shirt birthday coupon!
My own birthday is Tuesday and I’ll try to post something fun to celebrate. Meanwhile, our t-shirt manufacturer is celebrating their birthday right now with coupons for us.
See all the styles and sizes in our t-shirt store here. See codes below.
NOTE: The NEW RA WARRIOR STORE is HERE – click here!!
Can you come make Sweet Memories with other warriors?
How often have we heard how wonderful it would be for lots of us to meet together in person? Watch this video and read 5 reasons you’ll want to attend the Sweet Memories gathering in Texas coming up in a few weeks!
Central Florida Meet-up!
One more thing! Our Central Florida group is having lunch at Jason’s Deli in Orlando – click here for map next Saturday at 2 p.m. You can RSVP by email to Kelly AT rawarrior.com if you like.
- Ways we’re so much alike: Can We Find Similarities with Rheumatoid Arthritis?
- Reasons we’re so different: The Immune Fingerprint and Rheumatoid Disease
- Why we’re never alone: The Mouse in My Pocket: We Are Not All Alone