Rheumatoid arthritis has been a part of my life for nine years now. When I look back at my beginnings with this disease, I vividly remember the anxiety that came with frequent tears and hyperventilation. I remember fearing the worst of what could happen to me because that is all I saw on the internet or read in books. I can still feel the panic I experienced when one book explained ways to have sex while living with rheumatoid arthritis. Seriously, would I have to make changes even in that department? The sad truth was I did. I had to figure out how to make life as a mother, wife, friend and teacher work.
When I was diagnosed with rheumatoid arthritis in 2004, I quickly went from moderate RA to severe RA. I had several really tough years. One of my worst fears was that I would wake up in the morning and not be able to move. I started keeping a phone by my bed and whispered thoughts to myself that I would be able to reach the phone in the morning if I needed it. Some mornings it felt as if there was no way my body could move out of bed, but I did, even if it required help. My other fear was what I used to call “deformities” which I now refer to as “wonkiness” in my body. I feared my hands would change in extreme ways. Truthfully, the knuckles on my right hand do show signs of rheumatoid arthritis, but not anything extreme or that I can’t appreciate at this point. Rather than a lot of joint changes, my body has decided to go with a multitude of nodules ranging in size from very small in my fingers to quite large in my elbows. (I laugh now because I didn’t even know what a nodule was until I experienced them first hand.)
While dealing with extreme pain and fatigue, what I didn’t realize when starting on my journey was that we are each unique in our experiences with an autoimmune disease. I didn’t realize that the internet and books often focus on extreme cases or that the people that were doing okay with RA weren’t on the internet talking about it because they were out living their lives.
Recently I had a Vectra-DA test run by my rheumatologist. According to this test, my rheumatoid arthritis is now at a “moderate” level. Moderate!!!!! I love that word. For the most part, my symptoms are under control. I have little reminders here and there that I have a disease in my body, but nothing extreme. Flares are now a rarity rather than a regular part of my life. Yes, we experience this disease differently and two and a half years ago, I would never have imagined I would be where I am now.
By sharing my experiences here, what I want to emphasize is that throughout my journey with rheumatoid arthritis, I have needed to find the positive of living with this disease. I have been active in the blogger community, clinging to any and all blogs that showed any hint of being positive in nature. I desperately needed to see other mothers continuing to love and care for their children even if it meant reinventing how they did this. I have rejoiced when reading about fellow bloggers that still enjoy the company of their spouse/partner. I have relished the stories of folks continuing to work jobs and do hobbies that they love. I have needed to know that people were out there living fulfilling lives.
Last year Rheumatoid Arthritis Guy posted on his blog and Facebook account asking the community for photos of their hands. He took each photo and put it into a collage. Sitting at my computer viewing the collage for the first time brought tears and more tears(and is again as I think back on my first viewing). For the first time in nine years I saw hands that came in all varieties. For some people, they had obviously experienced the worst case scenarios of our disease. But what shocked me was how many people had little to no changes in their hands. I wasn’t the only one. Other people were like me!
I have been very fortunate to be a part of the Show Us Your Hands! community from early on. As I worked with RA Guy and Lene Anderson on the book Our Hands Can!, I read story after story of people that have dealt with a lot but in the end realized they still have much to give this world. Disease may take a lot from us, but finally I was hearing of people that were not letting inflammatory disease rule their lives. I have been amazed and in awe of the people who have shared their stories, both good and bad. I have gained strength from positive stories of knitters, artists, musicians, mothers, fathers, and more!
Today, Show Us Your Hands! celebrates one year as a community. I feel this abundance of gratitude to the Show Us Your Hands! team but especially to the community that continues to share their stories. Finally, I have a safe place to go and feel energized, while also sympathizing with those that are struggling. Thank you everyone for sharing and for being a positive force for me. As the Community Director of Show Us Your Hands! I look forward to sharing new community projects with you in the coming year.