The Seated View

What am I doing with a blog?   That’s what I asked myself in my very first post on The Seated View. Which was ten years ago today. I also thought (briefly) that I didn’t have much to say. Almost 1500 posts later, I think we know the answer to that one. So, what did I do with a blog? Ten years ago, I was a few months into rebuilding my life from a pile of rubble and ashes. I still had very little energy, the weakness of being really sick with an intense RA flare permeating all of me and my life . Yet, the joy of this second chance permeates the posts of that first month on the blog.  When I think of where I was in May 2005 and then look at where I am now, it brings an awed stillness within. My current concept of having very little energy is light-years from what it was back then when I could barely drag myself through the day. My stamina, my strength, my range have all grown exponentially and are still growing. On the surface, The Seated View...

As you may know, July is Juvenile Arthritis Awareness Months and not surprisingly, it's a cause close to my heart. Dr. B. on Health is an excellent program, available both online and in iTunes. Throughout July, Dr. B focused on various aspects of juvenile arthritis. Check out his archives and take a listen. I was thrilled to be asked to close out the month's programs with a chat about what it's like to grow up with JA and to talk a bit about Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and how it can support parents to help their kids with JA cope better. Take a listen to the July 29 program entitled A Child Is Not a Small Adult! I'm on for the last 10 minutes. While you're there, you may also want to register on Dr. B's site. It'll qualify you to win an electric bike , worth over $2000!    

   I don't remember a time when I didn't have Juvenile Rheumatoid Arthritis. Well, now they call it Juvenile Idiopathic Arthritis, but a rose by any other name is still a pain in the arse. I have lived with RA for over four decades and there are times when I've thought about how even really bad criminals tend to get off for good behavior after spending that long in prison, but apparently, I’m a lifer. And most days, it isn't really prison. It's just life and thanks to the Biologics, I'm living it, enjoying every moment of every day. When you’ve had RA - or any chronic illness, I guess - for decades, it becomes part of your life. It intertwines, growing in and around you, becoming you and you it. It is as much part of you as your shadow, is a different kind of shadow, one that at times demands entirely too many resources but without which I would not be me. Where does it stop and I begin? A couple of days ago, I read an article about a 14-month-old girl who...

  I was four when I had the first symptoms of Juvenile Rheumatoid Arthritis (JRA). I was also four years old when I was admitted to hospital and placed in isolation for three weeks with a suspicion of rheumatic fever. I don't remember much about that hospital stay, except being alone in a bed with white bars in the middle of a very white room with fluorescent lighting. Even the door was white and had a window in it. I was nine when I was finally diagnosed. When I was 11, I spent three months in a rehab hospital. That was where I learned that crying doesn't change anything. It was also where I learned to suck up being stuck with needles - every Thursday after rounds, I and other kids with JRA would line up outside an office and one after the other go into have our swollen joints tapped. This involved sticking a needle into the joint - without the benefits of local anesthetic - and drawing out the fluid. The nurse was usually too busy flirting with the doctor to hold our hand. I...