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A Back to School Prayer for Families

Blog Summary

May I have enough energy this year—parents need so much energy to navigate the demands of the school year, without pesky MS fatigue slowing them down.   So, may my fatigue not keep me from my children’s school activities, sporting events and dance recitals. May the hot weather not keep me from game days, or track and field days. May my medical appointments not conflict with those activities or events...

Did I Ever Tell You About Lucy?

Blog Summary

I think it’s time I tell you about the secret that helps keeps me going.   She’s my one constant that I can count on. Just seeing her can change my whole day from bad to good, in an instant...

Redefining MS

Blog Summary

After 25 years with multiple sclerosis, I have re-defined MS as Moronic Situation, Modified Swagger, Magnificent Strength and Motivational Spitfire.   I got these various new perspectives on MS, but it didn’t happen overnight...

Wheelchair Barbie

Blog Summary

Okay, I’ll admit it–on some level I wanted to look like Barbie. Even though I intellectually knew she wasn’t real and didn’t resemble any person I knew, that skinny piece of painted plastic still had the power to make me feel woefully inferior. There was something about her silent perfection that could not help but scream “pretty,” “hip” and “athletic” to me, especially when she was dressed up to go hiking or roller-blading with the ever-hunky Ken. Of course, every child goes through something like this. And because I did not develop MS until well into adulthood, I at least did not have the additional burden of incorporating a cane, a walker or a wheelchair into my developing self-image. That would only have made things more difficult and infinitely more confusing...

Making a Diagnosis of MS

Blog Summary

There is no avoiding it. Seeing a neurologist for evaluation of a diagnosis of MS can be very stressful. However, understanding what is needed to make a diagnosis may, at least in part, ease some of the anxiety.   Even with all the latest electronic and laboratory studies, an MS diagnosis is still one of exclusion. Unlike a positive biopsy for cancer, there is no single finding on history, exam, or diagnostic study that is unique, or only found, in persons with MS. Thus, making a diagnosis of MS remains one of excluding other diseases that can mimic MS. While this may seem easy, a recent paper from two MS centers reported that 1 out of 5 persons sent to the centers with a diagnosis of MS did not have this disease.1 More than 100 MS “look-alikes” have been described, but most are very rare, and only the most common ones are usually looked for. These include illnesses such as diabetes mellitus, lupus, Sjøgren’s disease, migraine with aura, high blood pressure, brain tumors, blood vessel inflammations and infections...

The Importance of Establishing Care

Blog Summary

For the longest time, I never prioritized the quality of care I was receiving because I thought the scope of my care was just the norm. It wasn’t until I connected with the MS community on social media that I realized I could be doing so much more for myself than I already was! I realized something needed to change when I had brought up the pain I was experiencing and was told it was all in my head. I don’t know about you, but that automatically took me out of my safe zone...

My Grade School Science Project

Blog Summary

I’m in fifth grade.   I have a Dorothy Hamill haircut. I’m wearing a brown corduroy skirt and a white turtleneck sweater with red and blue stripes. My left arm is resting across my stomach while my right hand holds the index card from which I’m reading...

Sometimes “Political Correctness” Just Means Seeing People for Who They Are

Blog Summary

My neighbor and I have been friends for 30 years. I have no doubt that she holds me to a high regard, as I do her. But when she asked me if I had a hard time being “crippled,” I literally felt a chill run through my body.    I have MS, and I use a cane or walker to get around. In my mind, that does not make me “crippled.” But even if I was unable to walk at all without a mobility device, I would still feel uncomfortable being referred to by that term. It conjures up an image of helplessness that is not only inaccurate, but robs me of my dignity...

Having a Bizarre Time With MS

Blog Summary

"Seinfeld" has an episode called “Bizarro Jerry.” For those unfamiliar with the show, the character Elaine meets three new friends, similar in physical appearance to her closest friends–Jerry, Kramer and George. These doppelgangers look like her best friends but they act completely different.  It is as if she has entered a parallel universe, somehow connected, yet completely opposite...

I Am a Runner

Blog Summary

Running is something I’ve always wanted to do. Growing up, I was chubby during my leanest years and obese the rest of the time. Running the mile in gym class was torture. I remember giving it my all and only making it about half way around the track before having to walk. I longed to know what that felt like–to run and not feel like I was going to vomit and pass out. In September of 2015, I experienced some vertigo and vision issues that ultimately led to a diagnosis of MS. Along with establishing a treatment plan, I researched how the foods I was eating could reduce or increase chronic inflammation in my body and decided to give up grains, dairy and sugar. 180 pounds melted off my body in less than 18 months...

That Was Then, This is Now

Blog Summary

I first heard the words, “You have multiple sclerosis,” in 1986. I had no idea what that was or how I got it. How could this happen to me at the age of 28? I had my whole life in front of me. What would become of me? How will my life change? Will my boyfriend still love me? Will I die from it?   I had so many questions, and there were not many answers...