I’ve been so timid to share my story on my blog, because it’s not a weight loss story, or something that feels like ‘that big a deal.’ But according to some of my most trusted friends, it’s something I need to do. It’s an opportunity for me to grow, and to take a step closer to the vision I have for my life and my business.
I have Multiple Sclerosis.
Multiple Sclerosis, MS for short, is an auto-immune disease where the body attacks the myelin sheath that protects the nerves. MS causes many symptoms, some of which are cognitive while others are physical; it can lead to disability. MS attacks, or exacerbations, come in many forms… some that I’ve experienced are migraine-like headaches, spasticity in the legs, loss of vision (optic neuritis) and fatigue. I’m sure I’m missing some of the symptoms I’ve experienced, after living with MS since 1999.
It all started with fuzziness in my eyes, in October 1998. And led to be temporary blindness. I was in my final year at McGill and I could barely see my textbooks, not to mention the computer screen or the lecture content from my professors. I worked with the office for students with disabilities to get my exams enlarged so that I could read them. I worked with neurologists and neuro-ophthalmologists to help me through the immediate issues surrounding the optic neuritis and to figure out what was causing these issues. I had really bad headaches, whether due to the optic neuritis or the disease itself, and I took more pain management medications during those first few months than I ever imagined taking in my lifetime. I lived 3000 miles away from my family.
Those were hard times. But they were temporary and I was (errr, am) stubborn. I never stopped going to class. I never stopped hanging out with my friends. I never stopped living. I never stopped imagining that I would have an amazing life after graduation. When I look back on that time, I do so with pride. I could have given up. I could have chosen to hide. I could have chosen the easy road. I could have let the situation control me. But I controlled the situation!
Months later, most but not all of my symptoms subsided and I was able to get an MRI. It was that MRI, in combination with the optic neuritis that led my doctors to the MS diagnosis. Amazingly, when I heard that it’s Multiple Sclerosis, I actually had a sigh of relief. I remember saying out loud
“Well, now I know what’s wrong with me!”
And then, I continued on with my life. I didn’t know much, if anything about the disease, but having a name to go along with the symptoms told me that
- I was not alone and
- there were lots of smart people who were looking for ways to make this disease easier to manage and live with.
New Job, New City, New Life
About a week after the official diagnosis, I picked up and moved to the Seattle area for my new (post-graduation) career! I had the regular new career jitters, but I brought my inline skates and my positive attitude and dove into this new reality.
I don’t remember much of interest from those first few months, but I do remember connecting with a group of other people who were newly diagnosed – the group was so down on themselves, I didn’t stick with them for long – this wasn’t a death sentence; it was simply something that needed to be figured out for each of us individually.
In 2000, I participated in the Seattle Skate for MS. It was an inline skate marathon from Marymoor Park in Redmond to Gasworks in Seattle. It was tough. My vision deteriorated in the heat and I was worried my skate would get stuck in a pothole or something and cause me to tumble. Fortunately, I had a friend do the skate with me, and she really helped me through! It took us a long time – but I finished and was completely hooked on long distance skating!
I participated in that event, and another similar one the next few summers. As my vision became more stabilized, my time improved! The summer before Sam and I got married, I participated in a Skate Fitness group and managed a sub-2 hour completion time!
Skip Forward to 2005
… or maybe it was 2004… but it was the last time I needed a steroid infusion to help relieve symptoms from an MS exacerbation. And in 2005, I stopped taking my daily medication. That’s when I got pregnant with Camryn and my neurologist and I determined that I should stop the medication while pregnant and nursing. MS tends to go into remission during pregnancy. I resumed the same medication once Camryn was weaned, in the spring of 2007 and then, I went off the medication a year later when we decided to get pregnant again with Hayden. And then, in 2010, I returned to the medication and I haven’t missed a day since.
I don’t think much about having MS
Having lived with this disease for my entire adult life, I don’t dwell on it. Sure, I hate the disease because of the unpredictability and the damage it can do. The way that it can throw a wrench in plans and so on, but I’m doing everything I can do to fight the disease. I eat well. I exercise regularly. I try to get enough sleep. I try to keep my stress levels low. I have a positive outlook . I love life. I love my kids. I am happy.
The Walk MS Event
The local chapter of the National Multiple Sclerosis Society has a very large Walk MS event. I began doing the walk the first year I lived in the Seattle area. I continued doing it through 2005 and then took a couple of years off. A former coworker of mine (who also has MS) and I formed a team in 2008 and regretfully, I haven’t done the walk since then.
That changes this year! I’m thrilled to announce that Sam, the girls and I have formed a team –> Fit & S’Myelin <–for this years event! We are hoping that our team will grow beyond the family, and would like to invite you to join with us as we raise money and awareness to help find a cure for Multiple Sclerosis.
This year’s event will be taking place on Sunday April 13th, 2014 at Husky Stadium on the UW Campus. Please connect with me in the comments below, or on Facebook to get more information or to get involved!
Last year, our chapter expanded to include a run event before the walk. I participated in that event and have registered to do it again! Join our team –> Fit & S’Myelin <– Run, Walk or do both!
I’m doing the run and the walk again this year –> Join me 🙂