Sightseeing, small steps, and sleep
I’ve spent most of the last 3 weeks lying down with ice on my neck, or taking extra meds for the back spasms. The night before the FDA tofacitinib hearing, my back got so bad that I was about 90% certain that I would not be able to attend. My little walk to the White House intensified the ol’ back spasms as well as the usual joint flares. I could barely walk the day I testified. And I was extremely unsteady from meds. I felt stupid since resting would have been the safest choice instead of sightseeing. But, like most people with RA, I want my life back – and I fight to get any piece of it. And who wants to be the mom who made her daughter miss seeing the White House and the Washington Monument?
I made it to the hearing Wednesday after 4 hours sleep between med doses, taking tiny steps and holding onto my back. It felt like such a victory to just be there, I assumed it would go well. After all, I’d rehearsed my presentation over 100 times – enough to say it backward. But the frosty room and unresponsive remote control, combined with my physical condition and the disinterested committee drinking water, looking down, or talking while I spoke… I did less than my best.
The one hour public hearing lasted only 25 minutes. I went back to my hotel and slept the rest of the day – still in my dress. Thursday morning, we flew home to Katie Beth’s graduation. No one expected me to attend, but somehow – you guessed it – I did. Then straight back to the bed again. Hopefully, the doc will have some answers for me tomorrow. When Mary Khris texted me about how the hearing went, I replied “God is good.” She answered, “I’m glad it went well.” I said, “No, it didn’t really, but God is still good.” Honestly, I was angry at myself, but it will work out for the best.
Trying to do what you can’t is a pain in the a… sacroiliac area.
Some people who have no idea what it’s like to live with RA judge us for not trying hard enough. That’s why I give patients the benefit of the doubt that they’re telling the truth about their symptoms. And that they’re doing the best they can.
My son Tiger required stitches on his face 4 times before he was 3 years old – each time because he charged forward, pell-mell. He’s always been a warrior. Now 15, spring training for football has come with severe sacroiliac pain. The pediatrician has him on ibuprofen while he waits for a cancellation at the specialist. Friday night, I drove a few blocks to pick him up at practice and he was walking like me (i.e. a person with RA) again. When he felt like talking, he explained he couldn’t finish running laps because he literally couldn’t go another step. A coach gave him an alternate exercise, but he couldn’t do that either. The coach would not take no for an answer. He said, “Momma, you don’t understand what it’s like when you can NOT do something and yet you HAVE to. And no one knows how bad it is.”
“Son, I think I do understand. You just described my life with RA.”
More on the outcome of the meeting tomorrow! Meanwhile, these IMPORTANT NOTES
- The deadline for the Scavenger Hunt contest is extended until Friday, May 18. Two readers will win 6 kitchen tools each to keep or give away.
- Guess what BIG celebration occurs this Thursday, May 17?
- New Press section of the website is almost completed; see menu at the top of the page.
- Tiger inspired the Dr. Laptop post
- Tiger and Moi at Redskins’ training camp
- The “Can’t” Question with Rheumatoid Arthritis
- Last Mother’s Day: Surprise… Happy Mother’s Day!
- Pass the Pickles – and the Croutons