On Monday, my husband Mike had his bi-annual appointment with his neurologist—it was the follow up appointment after his yearly MRI. I’ve lost track of how many times we have sat in that office. Enough times now that I notice a couple new pieces of art on the walls and recent school pictures of grandkids on the doctor’s desk.
The first appointment with the neurologist was a day after Mike was released from the hospital after a series of issues that began over Christmas 2014 that subsequently led to diagnosis in January 2015. A three-hour MRI at the ER on a Wednesday morning, then holding my husband’s hand and trying to hold myself together. When the ER doctor came back and said, “I don’t believe in beating around the bush with this kind of thing, you have multiple sclerosis.”...
Six summers ago, I was a broke artist living in her first NYC apartment. I was smoking, living on crackers and coffee, and refused to pay for an air conditioner and the bill that would come with it.
I lived on the 3rd floor, and it was hot—so, so terribly hot. Although I never liked the heat, it was different this time: I would sleep with bags of frozen peas because my body was so uncomfortable. Every movement felt like my limbs were on fire and being attacked by pins and needles, but I ignored it. I told myself it was due to not eating properly and that I wasn’t getting enough sleep. Then one day I tried to look at my toes, and I felt like I got zapped with lightning. I ignored that, too. I ignored all the weird things that happened because I kept telling myself it was a pinched nerve...
Is anyone else getting tired of other people telling you how to manage your MS?
“Eat this, not that.”“I read this book that told me you should be doing this.”“But an expert said you should be living THIS way.”
It’s so easy to get wrapped up in our own negative thoughts, especially with the number of symptoms we have. Do you ever say something to yourself like, “I am so exhausted today” or “I feel like trash” at least a million times a day?
Believe it or not, this is just making a bad situation worse. How?...
We are “Run a Myelin My Shoes” (RAMMS), a team of 96 people from 25 U.S. states and 16 nations. 49 of us live with multiple sclerosis (MS); 47 are our support heroes. On October 21, 2018 we came together from every continent across the globe to participate in the Detroit Marathon. This is our story.
“If you had one shot
Or one opportunity
To seize everything you ever wanted
In one moment
Would you capture it?
Or just let it slip?”...
While some symptoms of MS are visible, often times, they’re not. Symptoms like fatigue, numbness, tingling and mood changes can bring a chorus of, “But you don’t look sick” comments your way.
Many celebrities, musicians, actors, athletes and politicians have decided to use their platforms to shine a light on what it means to live with MS...
You know the saying, “never say never?” Well, I continually remind myself of this since my diagnosis 13 years ago. First it was, “I will never marry someone in the military or shorter than me.” And then I did both. I have told myself multiple times, “I will never do a marathon,” and I have done Challenge Walk MS (50 miles in 3 days!) twice and recently ran in a marathon relay.
It’s so easy to say no to things, especially if the challenge seems too daunting because there is a fear that MS may prevent you from accomplishing something. This fear, in turn, overshadows the possibility that you really can do it...
Three games of volleyball a night is getting a lot tougher than it used to be. I’m not sure if it’s because of my age (40 is just around the corner) or my chronic illness—even five years into my diagnosis, it’s still tough to tell the difference sometimes.
The end of this year marks my fifth anniversary since being diagnosed with multiple sclerosis. I try to think back on those early days and where I thought I’d be at this point. Of course, I’d hoped to be fitter, stronger, more confident in my knowledge of my disease...
In the months that it took for me to get my diagnosis, I became increasingly desperate for one. The 10 months that bridged November 2015 to September 2016 were a source of frustration and confusion. Why wasn't my leg working? Would I ever get feeling back in my left leg? Will I have to use a cane for my entire life? What is wrong with me? While steroid treatment and plasmapheresis treatment brought relief, I was still in search of a final answer. At the end of August, I got my answer. I was diagnosed with multiple sclerosis. The next chapter of my life officially began.
Since my diagnosis, I've been on a program of an aggressive course of treatment that has so far been very successful. I've chronicled the importance of rest and the amazing support that Kate has provided in this crucial part of our fight with MS. Conversations with my neurologist surfaced another important piece to this fight: exercise.
The Medicare Annual Election Period (AEP), or Medicare Open Enrollment Period (OEP), has arrived. With approximately 25 to 30 percent of people with MS enrolled in Medicare, it’s important to be equipped with useful information to pick a plan that works best for you.
The AEP begins on October 15 each year. From there, you have until December 7 to make changes to your plan. Any changes you make during the Annual Election Period won’t take effect until on January 1, 2019. After then, you can’t make changes to your plan unless there is a special circumstance. Here are some general things to keep in mind during this period...
At work, have you ever asked why something is the way it is, and you’re told:
“I don’t know… that’s just how it’s always been done.”
Even just typing that, I start to break into a cold sweat...