After a whirlwind summer of contradictions, I’m finally back. The past few months have been a perfect microcosm of life with Rheumatoid Arthritis. Here’s what happened:
In May, these images filled my days:
That’s right. Lora and I spent a blissful two weeks cruising the Mediterranean Sea. We explored the ruins of ancient Rome, viewed masterful Renaissance art and architecture in Florence, witnessed the world’s most famous film festival in Cannes, and enjoyed a delicious home-cooked lunch on an olive oil farm in Montenegro. We even attended a wine tasting on our ship’s lush, green lawn, while overlooking the magical city of Venice.
Sure, I had pain. Sure, I needed to consciously balance activity and rest each day of the trip. Even with those limitations, though, I saw and did more than I could have possibly imagined. Life was perfect.
Fast forward to mid-June, when I took this picture of my ankle:
Sexy, eh? Not exactly the shape I’d like to accentuate with a pair of Manolos. June was the single worst month I’ve had since my diagnosis. I spent almost 3 weeks in a wheelchair, and 10 days in bed. Every joint was swollen beyond recognition and I endured constant, excruciating pain, even with regular doses of narcotic pain medications. I had no idea how I’d make it through.
In early July, I finally started feeling a little better. When I saw my rheumatologist, she suggested that we try a new biologic (the IV infusion drug I get monthly), given that my disease remains very active. As a result, RA is doing daily, irreversible damage to my body. Taking her advice, I started the two month approval process for Actemra. In two weeks, I’ll get my first dose, and by the end of 2011 (almost 2 years after my diagnosis), I may know if it is helping control my immune system.
I spent July and August working – much to the dismay of my doc, who thinks I should be on disability – and enjoying summer with those I love. I celebrated some birthdays, and visited family in NC and MI. Each morning began with an evaluation of my health (good day or bad). From there, I decided what I could/could not accomplish; at work, at home, and at play.
That’s life with any serious disease: lots of ups and downs, daily unpredictability, and a long and painful treatment road. During this crazy yet wonderful summer, I experienced all of those in spades.