The Seated View

My friend Cathy issued a challenge for May's Arthritis Awareness Month in the US: live your life outside your blog. She tasked some people she knew, including me, to describe how we share our RA outside our blogs, without it taking over our lives. My guest post appears on The Life and Adventures of Cateepoo today: Photo by David Govoni "There are some distinct benefits to your juvenile arthritis causing you to use a power wheelchair since your teens. For one, no one doubts that I have a chronic illness. The first symptoms of juvenile idiopathic arthritis (or, as it was known in the old days, juvenile rheumatoid arthritis) arrived when I was four years old. It took another five years to get a diagnosis.  Initially, the JIA settled in only in two joints, but when puberty hit, so did the disease. And hard. Fast-forward through a bad systemic flare that almost killed me, fused hips, two years spent lying in a hospital bed waiting for hip replacements,...

Bury to save for later. Then go get it again. Yum!

  The 2015 Your Life with RA team Someone told me that this year, I had the best reason not to do the Walk to Fight Arthritis, what with still recovering from the crazy health situation . To me, that means there are so many more reasons to do it. I’m alive. Having built up enough strength and stamina to do a 5K before I got sick had, according to my doctors, a lot to do with why I survived and am bouncing back pretty fast. I’m bouncing back pretty fast. A month ago, I barely had enough energy to sit in my wheelchair for two hours. This week, I went back to work. We’ve done the Walk for two years. That means it’s tradition! Earlier this year, I worked with The Arthritis Society on enhancing accessibility for The Walk to Fight Arthritis. I want to see our work implemented. With the exception of some numbness in my hands , I got through a traumatic health experience with very little impact in terms of my rheumatoid arthritis. That has a lot to do wit...

It is still with me. The ICU experience , the hospital stay, the surreal fact that I was so very sick, that I came so close to death. It colours part of every day and I suspect it will continue to do so for some time to come. Trauma sticks around.  At first, I thought I was fine, even Fine. But after a lot of conversations with my family and with others who have been there, and quite a lot of this presence of memories, I have come to realize that it was a trauma. You might think this is obvious, what with waking up with a crapload of equipment in my throat doing my breathing for me, not being able to speak, and having multiple tubes hooked up to my body, but it took a while for me to recognize this. Because I’m not always totally smart about my emotional reaction to things. My rheumatologist told me of another patient of hers who after a lengthy ICU stay made a career out of writing and speaking about ICU PTSD . Which turns out to be fairly common. Having hallucinat...

This post is a look at the experience of being on a ventilator from the point of view of the person on the receiving end of the tube. I was initially ventilated with a tube going into my airway through my mouth, but don’t remember what that was like. When an attempt was made to extubate me, it didn’t work. I found out later that up to 40% of people who are extubated will need to be re-intubated. When they attempted to do that, my vocal cords were so swollen — common after being intubated — that they had to do a tracheostomy . My memories of being on a ventilator start then. It was an extremely educational experience. Which makes it sound as if it was no big deal and that’s not the case at all. I was remarkably calm about it at the time, but that likely had something to do with the happy pills they feed you in the ICU. It’s a stressful situation to be in and I guess they learned that the patients do better if heavily medicated. Rhythm . I don’t actually remember much about...