I write about my health because I have survived the worst. This week, I will be turning 42. A few months ago, I was listening to an interview of Tammy Duckwork. She is a female veteran running for Congress (take the time to read her amazing story.) I have done nothing nearly as amazing and heroic as Tammy Duckworth, but we all share something in common with her; each day, all of us face challenges. Some small, some large and some we would not wish on our worst enemy.
In her radio interview, Tammy Duckworth, said something that really struck a chord with me. She talked about the people who carried her from the battlefield and those who worked hard to save her life. I don’t really remember the exact conversation, I just remember one statement, “What would the people who saved me think?”. I understood it as, when things get tough, she remembers those who helped keep her alive and it kept her going.
Everyone has their own interpretation about things people say, but when I heard what she had said about the people who saved her, I realized she was right. I have been near death three times. And I started thinking of the many medical professionals and family members who worked hard to help me. Not only in the past, but people help me all the time and I am so very grateful. Those who have and still do help inspire me. And when I get down, I now think of them in my corner and it’s like a hug. It also motivates me to do more for others.
I will be 42 this Saturday and to be quite honest, I did not think I would make it this far. I have made a lot of mistakes. Some of them pretty dumb and some; just products of panic, frustration and to be quite honest, sorrow.
I also wanted to work, but found that it would be unfair to my co-workers because I am not reliable. It’s not a bad thing, it just is. Im not cannot be counted on to be on time for work or even be at a workplace because my health has to come first. I have frequent doctor appointments and there are days I need days to stay home and rest. Sometimes this rest is voluntary and sometimes I am forced to rest because of pain or an infection. I tried volunteering at my local Boys and Girls Club and the director was very understanding because I missed many days, but I was very hard on myself about missing work, so I decided to move on.
I started to focus on what I could do. I had been attending writing workshops at San Diego Writer’s Ink. I loved it and it helped me come out of my shell as a writer. I learned to take risks and learn to enjoy criticism, because I can only learn from it. I thought about going back to school, but a master’s degree requires a big commitment and having a young son, I wanted to have flexibility to be with him. So I made a list of things I have been doing since college to try and come up with a way to participate with the world outside. Everything was related to health; good and bad. So, I decided to write. I started a blog called, “Scleroderma, Sarcoidosis and Box Wine.” I wanted to bring humor to patient advocacy because some of the things that have happened in my life, as crazy and as scary as they sometimes were, had moments that made me laugh. That laughter broke the tension and lightened my load. Reflecting on these experiences made me find even more humor in them.
Shortly after I started writing and began to met people on Twitter and Facebook with other conditions, I realized we had many overlapping symptoms, similar situations and I wanted my blog to be about more than my two diagnoses. The truth is, chronic illness or not, everyone struggles with obstacles in their life that force us to adapt and overcome. While we adapt and overcome, we meet new people, strengthen relationships and become who we are because of what we experience and learn.
For me & many, life is about adaptation- chronic illness or not. It is not amazing when anyones accomplish something because they have a chronic illness; it is the accomplishment that is amazing. Our illness or anything that is tough to face, just helps to shape our experience. It becomes part of our story.
I came up with the name The Mighty Turtle in 2011. My son and I have been watching nature documentary for years and I was always inspired by the turtle’s ability to adapt and over come. They outlived the dinosaurs. So, after years of hearing, “Sclero-what?” when telling people the name of my blog, I changed the name and a friend at Websipe.com built me an amazing site.
Usually, I post about every five to seven days. I decided to join Wego Health’s 30 Days 30 posts and I’m going to post every day in November. I tend to over edit and by taking part, I hope I will be less uptight and just let the words flow and post them. I’ll still be editing, but with less time, I will be less filtered. Maybe I’ll be funnier. Maybe my writing will make a great insomnia remedy. Either way, I am looking forward to reading my fellow bloggers posts, getting to know more people and most of all; have some fun!