10. Starting off the new year by asking for and receiving so many letters of support.
I started 2013 with Help A Superhero! A Personal Appeal From Rheumatoid Arthritis Guy, in which I asked readers of this blog to please submit letters of support that would be attached to financial assistance applications that I planned to submit to medical institutions in the United States. So many people responded, that I ended up having to write a multi-page cover summary which highlighted many of the points that were made in the numerous reference letters. Thanks again to everyone who took the time to write one of these letter–your support means the world to me.
RA Guy noticed he was, quite unwillingly, being fitted for a cape. His knees would grind, and not just during the winter months anymore. He would come to own a cane, then crutches. Until eventually, maybe to see if he truly was all alone, maybe to rail at the heavens, he started a blog. Thousands of followers, arthritis organizations, even pharmaceutical companies listened intently. They would come to learn of this superhero, this genius and visionary of quiet intensity, integrity, abundant warmth, and yes even humor in the face of unimaginable pain. A man who consistently chose the alternative ending as a way of showing us–this thriving community of optimists that he built–that the best was yet to come. —Michele
9. Learning to live in the moment.
As I journeyed back to wellness during the year, everyone was asking: What Am I Doing?
8. Participating in Jodi McKee’s Autoimmune Portrait Project.
One Saturday afternoon, after having brunch in SOHO with a group of lovely women who live with rheumatoid arthritis, Jodi invited me to go on a ‘photo shoot’ for her Autoimmune Portrait Project. Even though I was smiling on the outside, I was broken on the inside. (This photo was taken three days before I reached my ‘rock bottom,’ described in item #1 below.)
I’m happy I had the opportunity to participate in this project; it was not only as a way to remember that period of time when I worked so hard to bring my body back into balance, but it was also as a way to add my image and words to the growing voices of people who continue to share what it is like to live with inflammatory arthritis and other chronic illnesses. Read my complete Autoimmune Portrait Project profile.
7. Turning 40.
I turned forty this year…and even though I was away from home at the time (I was in New York City for medical reasons), I was surrounded by a group of close friends who helped me celebrate into the wee hours of the morning.
6. Becoming more fit than I’ve been in a long time.
Some time around the middle of the year, I woke up one day and realized that I was more fit than I’ve been for decades. Not bad, for someone who in the prior twelve months dealt with minor surgery, very limited to no mobility, and more Prednisone pounds than a person could want. (And for the record, this is the first selfie I’ve ever taken!)
5. Getting off Prednisone.
For years, I’ve used corticosteroids on an ‘emergency’ basis, i.e. short bursts to get me through my most challenging periods of pain and disability. Earlier this year, my Prednisone use became not only long-term, it also became high-dose. Before I knew it, my body and my mind were spinning out of control. The three-month tapering/withdrawal of this drug was one of the hardest, and most frightening, things I’ve ever experienced. I’m please to share, though, that I’ve made it through that last half year without having to use one gram of this stuff! Read more about my prednisone experience here.
4. Trekking the Bolivian Inca Trail.
While I was in New York City for a few months earlier this year, I learned how to walk again. This was the second time in the past decade that I’ve had to do so, as a result of the constant pain and inflammation that my rheumatoid arthritis produces in my body’s joints, muscles, and tendons. (At the end of last year, both my doctor and my physical therapist told me that if I didn’t find a way to start moving more, that my mobility losses were going to become permanent.) I decided to train for a three-day mountain to jungle trek…and in August, I accomplished what I previously thought was impossible! Day 1. Day 2. Day 3.
3. Paragliding over the Andes Mountains.
To celebrate an amazing year of personal healing and recovery, I decided to go paragliding over the Andes Mountains. Read more about how it felt to be sky high.
2. Finding my identity and voice through the pain.
Over the past few months, I’ve grown increasingly frustrated. Using a keyboard and mouse has become quite a challenge on most days, due to the chronic pain and inflammation in my hands.
I’ve always considered myself to be a designer and not a writer, though…so I recently took out some of my tools that I haven’t used in ages (cutting pad, metal straight edge, blade cutter, and glue sticks). I put my printer to work, and started to cut and paste away.
I quickly found that there was something extremely therapeutic about creating a visual journal, both in being able to perform actions that I thought were no longer possible with my hands, and in finding a way to communicate without words.
1. Bouncing back from rock bottom.
Depression and suicidal thoughts are a normal part of living with chronic pain and illness. I have learned that by sharing my story, I am not only helping myself…I am also helping others. Read about my journey to rock bottom.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!