44, Land O' Lakes
GOAL: To help spread awareness for reflex sympathetic dystrophy and my book, "When Can We Run, Dance, and Play Again?" (self-published; $17.95).
WHY I DID IT: Five years ago, I sprained my right ankle and was diagnosed with reflex sympathetic dystrophy, or RSD, a progressive, incurable disease of the autonomic nervous system. It's a multi-symptom condition that can affect one or all four of the extremities.
RSD is ranked the most painful form of chronic pain that exists today on the McGill Pain Index. There are four main symptoms: constant burning pain, inflammation, spasms in blood vessels and muscles, and insomnia/emotional disturbance.
One night while I was tucking my 3-year-old daughter into bed, she asked me, "Mommy, when can we run, dance and play again?" For a few seconds, it felt as if time stood still. A huge lump quickly formed in my throat and I replied, "Mommy is working on that." I kissed her goodnight and tried to go to sleep myself, but the exchange kept repeating in my head. I felt an urgency to write a children's book, not only for my kids but for others who are challenged by an illness.
Being a mom, wife, daughter, sister and friend, and having RSD, I have to balance it all. You become your own cheerleader. When my children's book was published, it was a fantastic coping tool, and I wanted to take a bad situation and create something good. Anyone can get RSD, but it affects women in their 30s and 40s much more than men, and this was a great motivator as well.
HOW I DID IT: Many people ask me how I keep in shape, not only physically but mentally. The funny thing is, before my injury I worked out all the time, but post-injury no matter what I did, it seemed to make my RSD worse. So what to do? Eating healthy was and is very important. I incorporate fresh vegetables, fruits, fish and whole grain foods into my daily diet. Drinking water and making protein shakes with fresh fruit is also part of my routine. I take extra vitamin C, magnesium and B-complex to help boost my immune system. Having a scheduled exercise program, even after five years of being challenged with RSD, isn't possible.
Keeping a sane mind is important. Writing in my journal is a wonderful way to express myself. There is a sense of relief and hope when I write down my feelings. Since I've been diagnosed, I've not only connected with others who have RSD, but I've met a parent and a student affected with this illness at my child's school. Meeting other RSD sufferers and their families made my urge to help spread awareness even more important.
During my journey I've been referred to different therapists, and to hypnotist Debbie Lane. She and I connected immediately, and I knew I would enjoy learning how to help myself go into a deep relaxed state so I could help lower my pain level. My sessions with Debbie helped me in many ways. I learned how to focus on my breathing, and how to refocus my pain with visualization. The visualization techniques can help me handle the level of my pain.
There is a dark side to RSD. The spasms are uncontrollable, and the pain level can be extreme. I have had to be carried out of events, dinners, the pool, etc. But I use the techniques I learned and other distractions, such as listening to music and spending time with my family, to help my mind to be in better place. These tools are not a cure, but they help me to cope.
Everyone's RSD is different. My RSD has been more than difficult, but I will never give up hope! Hope and my family are what keep me fighting! The love and support they give me keeps me strong.
HURDLES: One of my biggest hurdles is digesting the fact that I probably will never go into remission. Trying to find something that will help with the pain is a constant challenge. The treatments and procedures alone are enough to drive anyone over the edge, but the true hurdle is keeping yourself positive and in a good place.
I embrace being a woman. Fashion, doing my hair and makeup, etc. — it's all part of who I am. When I dress up, it makes me feel better, and I am all about feeling good. Because my RSD is in my foot/ankle, I cannot wear sandals, high heels, tennis shoes, etc. I have to wear flat, fuzzy boots. Over the years, I've had many looks and comments, especially during the summer! It can be 100 degrees out and I will be wearing my fuzzy boots. I promise I'm not trying to start a trend!
GOING THE DISTANCE: When it comes to RSD, I will overcome every time. This illness will continually test me, but there is no stopping me! Everything I experience is part of my journey, and no matter what, I am excited to see what the future holds.
BEST ADVICE: Life is too short. I know how difficult it is to get through the pain, but make sure you keep whatever passion or hobby you love in your life. Family and friends are very important! The love and support they give is vital.