The Best Of 2013

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.

Brooklyn-Bridge

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.

RA-Guy-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.

40th-Birthday

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.

Fit

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.

Satans-Tic-Tacs

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.

Trek

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.

Paragliding

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.

Visual-Journal

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.

This is my story, as told by images that make my soul smile.

1. Bouncing back from rock bottom.

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!

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Visual Journal: My Story

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.

This is my story, as told by images that make my soul smile.

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Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Show Us Your Hands! Annual Report: Building Foundations for the Future

SUYH-Logo-128x128To celebrate the first anniversary of Show Us Your Hands! as a non-profit, the Board of Directors is writing a series of blog posts about the past year. Each of us writes about a different topic, relevant to us as individuals, to the organization and to the community. We welcome your comments and hope you’ll share these posts with others to continue the conversation. Eduardo Flores, President, closes the report by taking the broader look at our goal of uniting the inflammatory arthritis community and what this means for the future of Show Us Your Hands!

Two years ago this month, Show Us Your Hands! debuted as a collage of hundreds of hand photos of people who live with inflammatory arthritis. What was conceived as a visual tapestry of all different type of hands from around the world quickly grew into something larger. For some people, it was a step into a place where they could feel proud of their hands. For others, it was a way to share stories about all of the different things that these hands continue to do. For other still, it was a moving visual representation of the community of individuals who live with inflammatory arthritis, and who continue to connect with one another for inspiration and support.

Last year this month, Show Us Your Hands! announced that we had grown our board to include individuals who live in the United States, Canada, England, and South America. Our application for nonprofit charity status was approved, completing a busy first year which included the design of multiple inflammatory arthritis community collage posters, as well as the Our Hands Can! photo book.
This past year has been a very successful one, in many ways. Even though we have been a little silent at times, we have been busily working at creating all of the different foundational pieces of running an international organization. Most importantly, we have carefully been building a foundation that not only allows for continued growth in the future, but that also allows for our organization to be fully run by a group of dedicated volunteers, all of whom live with inflammatory arthritis.

In doing so, we have learned a lot about ourselves as a community, as an organization, and as individuals. We have learned how to balance the excitement that comes with expanding existing community projects and launching new ones, with the realities of living with inflammatory arthritis. It’s been fascinating, building an organization which is based completely upon the needs of individuals who live with rheumatoid arthritis. In previous posts we have shared some of the lessons that we have learned during this process, and we look forward to sharing more updates in the future.

During early January we will be announcing one more opening on our board of directors, and look forward to hearing from individuals who would be interested in joining our dedicated team. We would also like to thank all of our friends and members of the community who have donated funds over the past couple of years, so that we may reach the place we are at the moment. We are excited with how much this community has grown over the past couple of years, and we look forward to uniting and inspiring even more people who live with inflammatory arthritis both now and in the future.

RA-Guy
Eduardo Flores
Show Us Your Hands! President
December 17, 2013

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Show Us Your Hands! Annual Report: Our Hands Can! Community Stories

SUYH-Logo-128x128To celebrate the first anniversary of Show Us Your Hands! as a non-profit, the Board of Directors is writing a series of blog posts about the past year. Each of us writes about a different topic, relevant to us as individuals, to the organization and to the community. We welcome your comments and hope you’ll share these posts with others to continue the conversation. Today, Lene Andersen, Director of Community Outreach, presents the first edition of our new feature Our Hands Can! — Community Stories. Modeled on our photo book, these are the stories of people living with inflammatory arthritis, their hands and their lives.

Working with Show Us Your Hands! is a joy. I get to spend time with people I like, doing something important. The photo book Our Hands Can! is one of my favorite initiatives, combining our mission of raising awareness of inflammatory arthritis with our message of positivity and acceptance, of ourselves and each other. We all liked it so much that we decided to create a regular feature profiling members of the inflammatory arthritis community telling stories of how their hands give them support and are a conduit to happiness.

Kim Curry, 53. Pennsylvania. Scleroderma, RA
Kim Curry

I need my hands to hold and play with my grandchildren, they are what I live for! This is the only way my grandchildren have known me. Anything that involves fine motor skills is difficult, however, I enjoy cooking for them when they’re with me. I play board games with them, build Legos with my grandson and have tea parties with my granddaughters. It gives me pleasure to know that while arthritis limits much of what I do, there are still things we can do together.

Tina Warner, 50, Minnesota. RA
Tina Warner

Last year I reupholstered my dining room chairs, and was so proud of how they turned out. When you can take something that is worn out and ugly and make it look like new again just by using your hands, it really gives you a sense of accomplishment. I also crochet and recently taught myself how to crochet hats, scarves, and mittens. The hats give me the most satisfaction. I made my 7 year old granddaughter a matching hat, scarf, and mittens, and she just loved them. I will continue to create things with my hands as long as I can.

Annette McKinnon, 65. Toronto, Canada. RA
Anette McKinnon

I use my hands to connect with others who have RA. From the time of my diagnosis I craved conversations with others like me and now my hands enable that communication through Twitter and my blog. Sometimes the online conversations are so speedy and exhilarating it feels like actual surfing! I never thought I would say that because of the damage to my joints, but it does not hold me back from meeting new friends online and passing on the information I have learned over the years.

In Memoriam: Flossie Doty, Florida.
Flossie & Sharon

Flossie Doty and her daughter Sharon Wickham were part of the Show Us Your Hands! photo book. Their experience of sharing inflammatory arthritis – Flossie’s RA and Sharon’s psoriatic arthritis — and their close relationship is a very special story. Flossie passed away earlier this year, but her spirit of determination and will to be positive lives on. The following is an abridged version of Sharon and Flossie’s story, as it appears in Our Hands Can!

I have always loved spending time with my mother. At a very early age I told her that I was going to live with her forever. I didn’t actually do that but have always lived nearby. My mother taught me how to sew and enjoy crafting. We have completed many creative projects together. I am beginning to teach my daughter to express herself with her hands through creative outlets.

I use my hands, even though they hurt, to comfort and love my child as my mother did for me. I want my daughter to learn compassion from my relationship with my mother. I want her to know that life continues regardless of the curveballs life throws at you.

Inflammatory arthritis may try to destroy your body, but it cannot diminish the love between mother and daughter. In fact, it can have the ability to help strengthen them. My mother and I sharing a similar daily struggle has deepened our relationship.

Thank you to everyone who were featured in this first edition of Our Hands Can! — Community Stories. We look forward to continuing this feature in the future!

Lene

Lene Andersen
Show Us Your Hands! Director of Community Outreach
December 16, 2013

Show Us Your Hands! is a nonprofit charity organization that aims to unite and inspire people who live with inflammatory arthritis. For more information, please visitwww.showusyourhands.org.

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Show Us Your Hands! Annual Report: Managing Stress

SUYH-Logo-128x128To celebrate the first anniversary of Show Us Your Hands! as a non-profit, the Board of Directors is writing a series of blog posts about the past year. Each of us writes about a different topic, relevant to us as individuals, to the organization and to the community. We welcome your comments and hope you’ll share these posts with others to continue the conversation. Sallie Ferguson, Director of Fundraising, writes about how managing stress benefits Show Us Your Hands! and ourselves. She also shares exciting plans to expand in the new year.

Stress, me? Never! Ask all my friends and colleagues over the years and they will confirm that I am always serene and calm; nothing fazes me.

Or so we all thought.

While the swan held her head serenely above the water, underneath the water level she was paddling fervently trying to keep her head above the water without knowing that she was in danger of drowning.

Prior to my diagnosis of RA in mid 2012; I had been through a very painful 5 years where life had thrown some major challenges my way, including losing my Mother and Brother. This, together with a very demanding career with lots of travel and long hours meant that soon the cracks began to show. Suddenly, I was no longer able to deny my stresses and how they had manifested in chronic pain and fatigue and finally the diagnosis of RA.

One benefit of working for a large corporation is that they were able to support me, not only in the workplace but with psychological support and cognitive therapy. Why hadn’t I reached out for this help much sooner?

Alongside the cognitive therapy, I was also spending every spare moment researching and reaching out to various groups. It wasn’t long before the research led me to Show Us Your Hands! and ultimately the fabulous opportunity to work with Eduardo, Lene, Cathy and Jess.

The Show Us Your Hands! board really made me look at my life, my priorities and the demands that I put on myself. There is a real bond between us and a determination to make things better for everyone floundering as I was before. It has made me realise that I can continue to have high standards around delivering to promises while shifting my expectations and those of the board to accommodate the fluctuating impact of the disease. It has also helped me prioritize differently, finding ways to reduce stress, both on and off the job.

Last week I had a major breakthrough…..I switched my blackberry off on my day off work. The world didn’t fall apart without my responses and my team felt empowered and trusted. I’ve also joined Rock Choir – singing makes me happy (I’m not sure it makes those around me happy) and is a wonderful way to blow away the stresses.

The Show Us Your Hands! team has many plans for 2014. This includes ensuring that the Charity is registered here in the UK. It is my role to ensure we have the funding available to continue to unite and inspire the inflammatory arthritis community. We want everyone to know how bright the future can be!

Sallie

Sallie Ferguson
Show Us Your Hands! Director of Fundraising
December 13, 2013

Show Us Your Hands! is a nonprofit charity organization that aims to unite and inspire people who live with inflammatory arthritis. For more information, please visitwww.showusyourhands.org.

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