208 posts in the category “Multiple Sclerosis”

“Everyone needs a “Me too!” moment” – Member Shannon on exposing her truth

Posted July 17th, 2017 by

“With every part of me that becomes less than what it used to be, a different part of me usually becomes more than what it used to be. In fact, maybe that’s the point, but it doesn’t make it any less difficult.”

Shannon (Sna2164) is a wife, mother, animal lover and writer, living in southern California. She was officially diagnosed with multiple sclerosis at 27 years old, with three children under the age of four. In a recent interview, Shannon told us about her diagnosis, starting a blog and her journey to peace and contentment with MS.

Check out her story about exposing her truth and helping others who feel misunderstood.

Searching for answers

While others can go through years of suffering while waiting for a diagnosis, Shannon’s experience was comparatively quick. It started six months after her youngest daughter was born. She began having terrible pain in her right eye, combined with temporary loss of vision in that same eye anytime she went from darkness to light or vice versa. In her quest for an explanation and solution, she used eye glasses she didn’t need and took antibiotics for sinus infections she didn’t have.

A few months into trying to solve the mystery of her eye pain, she rapidly began experiencing other symptoms including numbness, tingling, and Lhermitte’s sign (a burst of pain that runs down the back, arms and legs when the neck moves). As if slowly going numb from the feet up by inches every day wasn’t enough to alert her primary care doctor that she needed a specialist, one night she got up out of bed in the middle of the night to go to the bathroom and hit the floor. She tried again, and hit the floor again. This temporary paralysis subsided within minutes, but it alarmed her primary care physician enough to insist she see a neurologist right away.

Shannon saw a neurologist for the first time in August 2004 and was officially diagnosed with multiple sclerosis (MS) in October 2004 after an MRI of her brain and cervical spine revealed multiple lesions. She was 27 with three small children and had just been diagnosed with a condition she knew nothing about.

Finding strength through words

Starting her blog, diaryofadisease in 2015 was both a terrifying and freeing decision that Shannon says was the best decision she ever made. She’d been writing about her experience living with disease over the years and wanted to find a way to share it with others.

“I asked myself if creating a blog was really something I wanted to do, would I have regrets about not doing it, simply out of fear, in twenty years? And the answer was yes, so I forced myself to do it despite my long list of reasons I felt afraid and inadequate.”

Many months later, her dream became a reality. While there were many times she wanted to give up, her son stepped in and helped complete her vision for the site.

“He also took the photo on the home page which was anything but candid. I told him I felt like I was standing still in a world that was passing me by, and since he already was quite the photographer, he knew just how to capture my feelings in this photo that speaks volumes.”

When she released her blog, even those close to her knew very little about her struggles living with disease because it was, and still is, very challenging to talk about. Despite her fears, she knew it was important to be honest about her health and experience with MS. She also felt like there wasn’t enough information online that spoke to the heart about living with disease.

“There are volumes of information about MS and disease that speak to the brain about the scientific ‘ins and outs’, but nothing on how darn hard it is to suffer the symptoms. Everyone needs validation for their feelings, everyone needs a ‘Me too!’ moment.”

Although Shannon started her “diary of a disease” as a way to cope, she hopes that it’ll help others who feel equally as lost and misunderstood in their journey of disease.

“One of the greatest rewards is that in surrendering my pride and exposing my truth, my burden is much lighter, and the people who love me in my life have a means to really understand me in a way I could never communicate verbally.”

 

Adjusting to a new normal

Shannon’s new normal with MS looks and feels very different than what she thought normal meant before. As she moves forward, she’s learning that there are many definitions of normal and that it is okay to have limitations, to live against the norm, to change the way she does things, admit her weaknesses and slow down.

Shannon’s goal is acceptance and contentment. It isn’t always easy. Since living with MS means that each day can look different, the journey to acceptance and contentment needs to happen not once, but again and again. The principle she attempts to follow daily is:

“My value is in who I am and not in what I do, because I have spent too many years drowning in the ‘do better try harder’ mindset, and true peace isn’t found there, and I think that’s what most of us long for.”

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#MoreThan multiple sclerosis: Guest blogger Cathy Chester’s journey as a writer, mom, advocate and optimist

Posted July 6th, 2017 by

As part of our ongoing #MoreThan series, we’re continuing to highlight patients’ stories of all the ways they’re more than their diagnoses. Here, Cathy Chester – blogger, wife, mother and advocate – shares her diagnosis story and how she’s much more than MS.

#MoreThan MS

When I was in my 20s I was thrilled to work for a large publishing house in Manhattan. It was an exciting dream job but I was competing against other recent college graduates who were all jockeying for promotions. To meet the challenge, I needed to be quick on my feet and look polished. I arrived early each morning wearing a beautifully tailored business suit and high heels. I could taste that promotion.

But fate stepped in when I least expected it. My 2-inch heels gradually became unbearable to walk in and I started to struggle to maintain my balance. I finally lost the battle one day when my right shoe slipped off my foot without notice. The growing numbness in my legs and feet masked the loss of my shoe. It was time to see a doctor.

After a CAT Scan, spinal tap and MRI I was diagnosed with Multiple Sclerosis.

I am more than my diagnosis.

When I told my boyfriend I had an incurable, unpredictable disease with no medications to curb my symptoms I held my breath, waiting for him to say, “Goodbye. See you around. Have a nice life.” Instead I heard, “We’ll get through this together. A life without you is no life at all.” We were married two years later.

I am a wife and a fighter.

Four years passed when we learned the happy news that I was pregnant. After two devastating miscarriages, we were overjoyed. At the time, I was driving with hand controls and walked with a cane. I was anxious about being a good mother despite constant fatigue, numbness and weakness. Then something extraordinary happened. As my baby grew inside my belly my hormones gave me a second chance. I no longer needed the cane and hand controls, I felt boosts of energy and the numbness and weakness temporarily disappeared. When our healthy baby was born, I called him my sweet angel.

I am a loving mother to a beautiful, happy son.

My relapsing-remitting MS reared its ugly head in those early days of motherhood. I learned how to manage my daily symptoms of the returning fatigue and numbness. I’d nap when my son napped and prioritized what I needed to do over what I wanted to. When walking became difficult I took intravenous prednisone (steroids) whose side effects were troublesome.

Eventually disease-modifying medications were approved and after trying the first two, number three was the charm. If you were diagnosed in the Dark Ages of MS, prior to medications, having options was Nirvana. As the old jingle said, better living through chemistry.

I am grateful.

Years passed and our son was preparing for college. I began questioning my future, wondering how to create a new career for myself. I dug deep to find what my passions were but it didn’t take long to find. I always loved to write and to help people manage their MS journey. I decided to go back to school to earn a certificate in patient advocacy. Then I married my newly acquired skills to my skills as a writer. That’s when I created my blog, AnEmpoweredSpirit.com, as a resource for patients to read and learn from my story, and to offer the latest news and information about MS.

I am a patient advocate. I am a writer. I love paying it forward.

As my blog grew and became recognized as an award-winning resource I began receiving offers to write for MS and health-related websites. I now contribute to three, moderate discussions for one and am the official blogger for a large international consortium whose mission is to improve the lives of those with MS.

I am a blogger, contributor and moderator. I am an active listener.

My professional life impacts me in countless positive ways, something I never imagined. My readers touch my heart when they share their joys and sorrows. I am deeply honored to hear their stories. Going from a blank screen to a message that touches others is magical. Helping the community makes all my efforts worthwhile.

I am grateful for this shared journey.

I am deeply humbled by loyal followers and eternally grateful for the love and support I receive from family, friends, colleagues and the people I’ve come to know both on and offline. I look to the future to find more ways to actively use my voice to continue making a difference in people’s lives.

 

I am more than my MS.

I am a wife, mother, daughter, sister and friend.

I am a writer, speaker, moderator and advocate.

I advocate for animal rights and love our two beautiful cats.

I am obsessed with classic Hollywood films, the arts and culture.

I love music and swoon when I hear Frank Sinatra or Ella Fitzgerald.

I am a lover of books.

I feel at one with nature because it brings me inner peace and serenity.  

I love to hike and knit.

I love gentle yoga and practicing gratitude and mindfulness.

I am an optimist who always looks for silver linings.

 

 

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