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Stroke or MS?

Posted on January 02 2015

Stroke or MS?
I am a mom. I am a mom, who was diagnosed with a stroke in 1999 at the age of 18, and then with Multiple Sclerosis at the age of 20 just weeks after having heart surgery to ensure my chances of having another stroke would be restored to that of a "normal" 20 year old.

I wasn't yet a mother, in fact becoming a mom was probably about the furthest thing from my mind considering I was in the middle of finals at my college in NYC at the time, it was November 2001 and 9/11 had just happened, it was a really strange time in more ways than one.

After college (it's kind of a miracle but I did graduate with a BFA in Communication Design!) I was a freelancer, I sold shirts and even took part in a trade show trying to license my illustrations. I got pregnant when I was 23 and had my first baby, she is the one in the white nightgown, at 24 years old. I consider myself lucky to have gotten diagnosed so young, because really it was the only reality I ever knew as an adult. I also had the nice, young, innocent confidence to not let it hold me
back and moved forward in life knowing that it would be what I made of it, and I intended to enjoy it!

Quite a few years later in 2008 I got married and pregnant. Things hadn't worked out with the father of my oldest daughter and I had moved with her across the country to Seattle and met my husband. In April 2009 I gave birth to Hazel who is the one pictured in pink.

Then everything started moving really fast. I had lost my job as a Visual Designer about one month prior to Hazel being born, it was 2009 and it wasn't a good time financially. Then about 2 months after she was born (which happened as planned at home) I started experiencing some bad MS symptoms, it was the worst I'd experienced since I was diagnosed.

Then I started pulling the pieces together and realized that through both of my pregnancies, nothing was consistent. I had been told to stay on drugs for the first, and told to get off IMMEDIATELY when I was pregnant the second time for example, these were with different doctors (neurologist/ob-gyn/midwife etc.) and when I switches neurologists after doing some research and discovering a treatment less harmful and even established as what was to be given to and MS Mom after/during birth my new neurologist hadn't heard of it and had to look it up!

I decided I was sick of depending on these "specialists" who only knew about what was directly in front of them and based so much of what they knew on what they had learned decades ago in school, I wanted to talk to OTHER MOMS.

So I started searching...I searched forums, blogs, websites and I couldn't find anything. Coming from a design background I felt confident making websites and when I realized that and .org were available I went for it!

I created the Moms With MS community in July of 2009. One year later was when I registered the Moms With MS National Team to start raising money during the NMSS Walks etc. I created a public site for people to visit in support of moms with ms (because I don't let anyone who isn't a mom/mom to be with MS join the private site).

Now more than 5 years from it's creation the original site is bringing together more than 1,100 moms from all over the world (7 countries last time I counted) who are all raising (or raised) children while dealing with a diagnosis of Multiple Sclerosis. I am seeing more and more information being made available to moms through other organizations and I am happy to see that our demographic is getting the attention it needs.

One of the best lessons I learned as a person with such a dramatic medical history is that I'm not alone. There is a huge number of people who are diagnosed with something, and we all have our experiences. As I see it, our brave stories are what makes us human, and that is something that we all are, so please don't let life hold you back from doing what you know you can do, because someone needs it!


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