Writing this blog post has been so hard for me.
Trying to think of all the positives of taking care of someone with MS when you’re 17 is not an easy feat. So I won't lie to you: It's not easy. It's not easy at all. It's not easy going from child to caretaker, it's not. Having to constantly take care of someone takes a huge toll on you. Now, I'm not the most experienced at being a caretaker or even at life, but I wanted to share with you some of the best tips that I have in being a caretaker and how to avoid not letting yourself have a life...
Somewhere along the way, my ability to savor certain foods has waned. Actually, it’s done more than waned. In some cases, it has warped into a bizarro situation where items I’ve long loved now suddenly taste of bitter disappointment.
What food now tastes terrible to me? My beloved morning coffee (with the exception of peppermint-flavored java), several red wines I used to adore, some marinara sauces, toasted everything bagels, and even the heartiest of sandwiches, unless they’re slathered with this spicy chipotle mayo I found...
Everything was just a tad off focus– like I couldn’t get my eyes to look forward no matter how hard I tried. I asked my mom for advice, not thinking anything of it. She figured it was allergies, gave me an Allegra and sent me on my way after I convinced her I didn’t need to see a doctor; I felt better after that. My eyes returned to normal, life went on. I left for college two days later.
Turns out, I wasn’t fine and things did not go back to normal. About a week into my sophomore year, I woke up one morning and had no control over my left arm. I found this out when I went to put my contact lenses in the morning of my first day of work, at my first real job, and my hand shot right past my face. I thought it was weird, but assumed I was just tired or having a “me moment.” So, off to work I went...
As I helped my husband, Norm, out of bed, I couldn’t help but think to myself: how did we get here?
It’s hard to even remember the people we were when we first meet in 2006. They seem like completely different people from a completely different time. A time when motorcycles, weekends filled with friends and family and simplicity moved our world...
As a family doctor and self-proclaimed health nut, I thought I’d never get sick. Although I saw patients every day with unexpected illness, with the right combination of a vegetarian diet + obsessive hand-washing + exercise + adequate sleep, I thought I would live to be 100. I knew the secret ingredients, the formula, for avoiding chronic disease.And then, nine years ago, I woke up dizzy. I thought I was getting a cold that would pass in a few days. But instead of a sore throat and cough, I developed double vision and taste changes...
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...