The New Face of MS
Jun 8, 20233 min
California, USA
When were you diagnosed with MS? 11/2010
What type of MS do you have? Active Secondary-Progressive MS (SPMS)
The last thing I expected was an MS diagnosis when I woke up one day and realized I couldn't speak, talk, walk, or even move. Little did I know that this unexpected turn of events would lead me to discover the answers to many lingering questions. After a summer of what I now know was the effects of Epstein Barr, waking up with these distressing symptoms, left me in a terrifying state. My husband immediately rushed me to the emergency room, and from there, I was referred to a neurologist who suspected and eventually confirmed the presence of multiple sclerosis (MS). A lumbar puncture provided the necessary confirmation, marking the beginning of a 15-year journey that has completely changed every aspect of my life. MS has brought about significant changes in my life both positive and negative. But, it has also opened doors in ways I believe I would not have found without the diagnosis.
I have had to redefine myself and my expectations, hopes, and objectives. I have navigated the fear of watching my body decline before my eyes while taking the medications meant to stall the disease. I have lost a version of myself I thought was complete. But it wasn't. Not even close.
MS has gifted a quiet certitude and strength in me. It brought me to my knees so that I could find grace in asking for help and beauty in receiving it. It has gifted me with a career, I never thought possible and an assurance in myself that I never thought possible. I let go of toxic people, things, and thoughts because, I only had room for that which filled me. I slowed my pace and found beauty through grace - both for myself and those in my world.
Fatigue, pain, and disability continue. However, I find joy in my golden retrievers, good friends, family, husband of 26 years, advocacy, and my role as Brand and Marketing Manager for BioNews, the parent company of MS News Today.
My symptoms include fatigue, leg pain, insomnia, and cognition problems. I deal with them as they come. Fatigue is truly difficult because, it feels like you are walking through quicksand. Pain is always a battle; but, I find a multidisciplinary approach is helpful.
My most important support systems are my husband, my dogs, and my family.
I use a cane. I also use a wheelchair when I travel.
Self-care is important. In fact, it is essential. I make it a priority to set aside time to meditate and to spend quality time with my dogs, family, and friends. As well as time to give back to the community too.
I would have told my newly diagnosed self to quiet her mind. Stay present as best as you can. Tomorrow is unknown, so try to live each and every moment to its fullest.
I am the Brand and Marketing Manager for BioNews, the parent company of MS News Today. I am also the host of the "Multiple Sclerosis Podcast". In addition, I fundraise and volunteer with the National MS Society and the International Progressive MS Alliance.
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