Kristin Bennett

For me and my multiple sclerosis a diet change is how my gardening life started. I have always considered gardening a luxury that if I had the time and money to waste I might have the opportunity to experiment with. I found out one day at my second visit to my new naturopath that I was not only deficient in just about every nutrient my body needs but that it was likely because I’m allergic to so many different kinds of food. Up until this point I prided myself on maintaining a healthy diet, lots of whole grains, vegetables, fish and that sort of thing. Up until this point I’d been very close to following the SWANK diet which is known as a very strict but for many people effective diet to calm multiple sclerosis. I learned I am allergic to dairy, almost all grains (including oats and rice!), eggs, nuts, and beans. After learning this my mind was further twisted when I learned I really had to increase my sodium and cholesterol levels because I was deficient in sodium and had not enough cholesterol to heal the myelin being damaged when I had MS flare-ups.

So how to eat?? At the time I didn’t have much money, and I’d recently had and was nursing my new baby and so I was hungry a lot, I was a part of the WIC program which was a joke because all I was eating from there was completely against my diet, as it consists of milk, cheese, beans, and cereal for the most part. Our house was under construction and we were living in my apartment when I realized that even though we weren’t living there I could use the yard to grow some vegetables in!

Over the last 9 months I have had 2 of my worst MS flares ever. I have struggled with anxiety, depression, and coming to terms with the fact that parts of my body may or may not be working the next day. When an early spring sprung here in Seattle where I live I was elated and went out into the garden and planted some seeds, this is a few weeks ago and the joy felt when each little sprout comes up (especially the peas and amaranth!) is almost overwhelming. (continued)

I was diagnosed with MS in 2001, two years after starting college in NYC and being diagnosed with a stroke. I’d just had heart surgery to close a PFO they thought caused my ‘stroke’ and so I had about a month of feeling almost like a ‘normal’ 20 year old girl until my left side got weak, and a month later being diagnosed with MS.

I graduated from Parsons School of Design on time in 2003 and had a baby in 2006, six months later I left an abusive relationship and after about 6 months of couch surfing, moved back to the west coast, landing in Seattle Washington.

I was very functional, a young single mom working hard at a software company and quickly being promoted through the company. I got married and pregnant in 2008. Once I was 8 months pregnant I was laid off in the third round of layoff’s the company I worked for in February 2009.

After having my baby at home, yes it was planned that way, I had one of the worst flares I have ever had. When I was online looking for resources for moms with multiple sclerosis I came up short. Being a problem solving designer/techie type, I realized that MomsWithMS.com/org was NOT registered, and I decided it was time for us to have a place to go. I registered both domains, .com is a private community for moms and the .org will soon be the main page and mostly a public resource about what we experience as Moms with MS.

As I am writing this, we have submitted our application to become a national team for the NMSS, we have over 345 members on the site in over 6 countries and over 35 states in the US. I am so happy to be a part of this wonderful group of women that is growing daily and so lucky that I discovered that domain was available.

Moms with MS is a community by and for moms diagnosed with multiple sclerosis to compare notes and support each other through the joys and sorrows of parenting and dealing with multiple sclerosis.

Fortunately at this point, I can type. I am writing this article just over a month from when symptoms started appearing from what can be called a flare, exacerbation, attack, or even
just an episode of Multiple Sclerosis (MS). For a period of time I lost most feeling, control, and strength through a lot of my body. Most impacting for me in my life was experiencing this with my hands! I am often asked ‘what it feels like’ to have MS, and so this is the first in a series of articles covering the wide variety of symptoms that have recently come and gone through this most recent episode.

Currently I can type, which I consider my ‘coordination’ as well as ‘strength’. About two and a half weeks ago, this was not possible! I was barely able to communicate digitally, moving a mouse was near impossible and required the use of both of my hands! I think this is most clearly described (cont’d)

Putting My Chin to My Chest Makes My Body Feel like it is Vibrating. It started one night when I sat near my husband late at night talking about something serious, I forget what though because I noticed that whenever he patted my leg, especially my knee, it felt like my leg was
vibrating! I think it was at least a few minutes later when I interrupted him, laughing, to tell him that if he wanted me to hear what he was saying, he was going to have to not ‘tap’ my legs because it was too distracting because I was having some strange symptoms! Of course he found this a big odd (as did I!) so I tried to explain it…basically it felt as if my bones were tuning forks, that when bumped were vibrating, and then from that the water in the cells of my muscle/fat/skin surrounding the vibration kind of reverberated out from there. (cont’d)

What an exciting month January was…it started with the Symposium I participated in on the 6th and then about a week later I went to Olympia where I spoke with my district Senator as well as one of the two Legislators. Unfortunately the other thing that started on this “MS Activist” day was that my MS seemed to become activated…it started with a falling asleep numbness/vibrating feeling. I remember thinking, oh boy, either my pants are too tight or this is a flare up, (I was really hoping my pants were too tight and circulation was making them feel asleep!). It was both of my legs at that point.

Soon it developed into my neck down.. or I should say my neck got all ‘feverish’ and I lost feeling/strength and coordination below that. It was not cool in other words!! By Friday I was in my old neurologist’s office and being shuffled for my 3 days of steroids to begin…they did nothing and by the end of the weekend it was worse. It took me until Wednesday to get ahold of my neuro again and so I called a different doctor who saw me the following Friday.

At this point this was all almost a month ago, and fortunately after having 2 extremely difficult weeks I did start to improve. I went through insane ups and downs, the MA program I planned on applying for had a 2/1 application due date and at that point I could BARELY type at all, meaning I had to literally watch my fingers as they typed because I couldn’t ‘feel’ which keys they ere on. I think at this point my fingers are about 70% better though thankfully. Prior to the last week in January, I spent days not even able to do that, and days typing with just my pointer finger on my left hand (I’m a righty but my left hand had more control) and when it came to writing with pen and paper I was using my left hand to ‘lead’ my right. One form I had to fill out to get my transcript sent to me me which pretty much consisted of my address, social, name, and date of graduation took about TWENTY minutes to write by hand and it looked like a child or very drunk person wrote it.

I did manage to get my application in on time though, well, on the extended time (last Thursday) so I’m VERY grateful for all the support the admissions staff gave me. Hopefully I’ll have some more news to share soon! I have lots of other stories to share from January but I have a beautiful little teething 10mo climbing up my leg so I gotta go…plus I have some pre-requisite homework to do in Personality Psychology…

Katherine has made the move and registered this team for our local Seattle Walk MS team this year (Thank you Katherine!!) and it is so exciting! MomsWithMS.com was launched on July 1, 2009 and by 6 months later, January 1, 2010, we had more than 250 members already!! Our members span across over 35 states, and 6 countries!

I’m not pregnant this year and am looking forward to doing the walk with BOTH of my lovely daughters this year.

I have upped my goal to $1,000.00 dollars this year as well, and hopefully can help coordinate the starting of many similar teams across the country too!! I will post information updates here and also on MomsWithMS.com

I have been taking a class through the Washington Business Center (used to be Women’s Business Center) it is called “Launch and Grow your ” and while it’s been interesting I have been flip flopping faster than any political candidate ever regarding ‘which’ business I want to focus/work on. In my mind I’m thinking about the book writing, community building, all the MLM’s I’m involved in, my volunteer roles and sooo much more, how can I focus on one?? Anyway, now that it is ending next week which is when I need to present a business plan, I have decided where I need to focus though in what regards I’m still not sure, though I know where I’m leaning. I think that what I have spent time on really shows my passions and what I’m most likely to thrive doing and that is working with Moms with MS.

I launched the community on July 1 this year after suffering my first bad flare-up since my diagnosis in 2001. I’ve watched it grow like crazy, we’re now over 90 members and it’s barely been 2 months and we are not yet listed in or supplied brochures at any NMSS locations or on their site aside from links on their facebook page. One member told me she found the site through google even which is fabulous, means we’re showing up in people’s searches when they are looking for what we provide.

At this point though we are ‘only’ a community. I have it being run through a (wonderful) ning platform which is great as a community but so much more is needed for this site!! I want to supply moms with information, help them promote what they are doing, feature people, have specialists contribute regarding cutting edge information that affects us MoMS and so forth. So as I told my husband a few minutes ago…I need to get started with a mindmap because for this topic my brain is exploding with ideas and even better, I’m getting loads of support and encouragement from anyone I talk to about this, whether they are affected/in the field or not.

Time to get started on that business plan…after the mindmap and find focus within this focus of course.