This blog was originally published on March 21, 2016 and updated on November 9, 2018.
Where’s the restroom?
There are so many symptoms with MS that a bunch of them often get glanced over. The one that has been the most active for me lately is incontinence. The opposite of constipation, incontinence is where your bladder is going to empty NOW; with as little notice as possible. I never thought that at 31, I would be like my grandmother and know where every bathroom in the county is. It can be super frustrating when out of nowhere, you have to go...
Dear Me, of three years, nine months, and 15 days ago:
Your life just changed. Changed from six weeks ago before this all started. Changed from 5 a.m. this morning when Mike woke up, left side completely numb and decided to drive himself to the ER so you could get the kids off to school. Changed from an hour ago when you were sitting alone, nervously waiting for him to be out of the MRI...
When I was first diagnosed about 5 years ago, I was prescribed Rebif, which is a subcutaneous injection, injected 3 times a week.
Now, as if being suddenly diagnosed out of the blue at 22 years old again, I’m losing feeling in my hands, feeling like I'd lost everything I worked for previously. I now had to comprehend injecting myself 3 times a week all over again with what felt like super strong acid...
I wrote a poem when I was graduating from college with my bachelor’s degree. The struggle I had to endure to reach my goal to graduate was rough.
I was diagnosed with relapse-remitting multiple sclerosis in 2006. No doubt, I have had my struggles with the disease. But having MS has taught me how strong I really am. I'm a very goal-oriented person, and if I had let the unpredictable days with this diagnosis stop me from achieving, I wouldn't be true to myself...
A few weeks ago, I went to a class called “Forget Your Fear & Trust Your Truth – A Personal Growth Workshop” held at Happier Valley Comedy in Hadley, MA by Pam Victor, and it empowered me to unleash my potential and stop holding myself back. Three hours at this workshop learning improvisation fundamentals has changed my perspective on life and MS.
When we first got to the class, we were asked to choose an intention card, and I chose one that said, “Take risks.” I was taking this class because I wanted to challenge myself and to live outside of the safety bubble I had created. After we all introduced ourselves and stated our intentions, we split up into pairs and played our first improvisation game called 1, 2, 3. All we had to do was take turns saying 1, 2 and 3 and if either one of us messed up at all, we both had to raise our arms in the air and shout, “Yay!”..
My appointment is at 3:30 p.m.
Some 25 miles away from my home.
The clock says it’s only 12:53 p.m..
Although it won’t be rush hour when I drive to the hospital, you never know what will happen when it comes to Boston traffic, so I want to provide myself a cushion of extra time, so I won’t be late for my annual MRI...
One of my takeaways from the 2018 ECTRIMS meeting this week is that there are thousands of researchers around the world working hard to figure out what’s going on in MS—from the very basic biology around what causes the damage to research around options for recovering functions. Some of this applied research is discussed in a blog my colleague Kathy wrote, focusing on the impacts of diet on MS.
I was especially interested in seeing how basic research around what drives brain repair mechanisms is unearthing more and more targets that present new opportunities for finding key molecules or therapies that will promote nervous system repair...
Greetings from ECTRIMS, the 34th Congress of the European Committee for Treatment and Research in MS. This is a lion of a meeting–the world’s largest gathering of researchers dedicated to MS. One thing I have noticed is how close MS researchers are getting to the real concerns of people affected by this disease.
People with MS have been asking for years about diet–is there a diet that works for MS? Does what you eat matter? The work I’ve seen thus far is beginning to answer these questions (links to the scientific summaries, or abstracts, are provided below)...
The buzzing throughout my arms, hands, legs and feet had not let up for 3 full days. My annual checkup with my neurologist was just a day away, so I figured, what better timing? I practically danced into the office and was so excited to get some answers about this newfound pain.
Enter the man of the hour, and come to find out, it’s… all… in my head? Excuse me?...
In early 2009, I decided to buy a new car.
The previous few years had been a whirlwind of events, including the birth of our first child, big career changes, finishing grad school – all sandwiched in with being diagnosed with multiple sclerosis...
I can still remember the very last time I called to schedule a blood donation. Donating blood was something I used to do regularly—it was a way I could give back.
But, this particular call was the first time I tried to donate after being diagnosed with multiple sclerosis. And that day, I learned a brand new phrase: “permanent deferral.” It’s an odd phrase, really, and full of a harsh finality...