Kristin Bennett

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…

Intensity seems to bear little children that can just gnaw at us. For me, the loudest of these little rascals is on my right arm. From the middle of my forearm to the top third of my upper arm, the part of the arm that the sun can see if I’m wearing a tank top, I am feverish. That feeling, when one has a fever and the skin is very sensitive, painful even to touch is what I mean by feverish. It came about today, and I’m hoping it just stays where it is and fades away rather than spreading through any other part of my body.

Whenever this happens, I take an inventory of what might have caused it. Usually the first things that come up are the stressful elements in my life. Yesterday my 6mo baby got vaccinated. Debates about this topic run rampant, and up until about a week ago, I was not one of the people who supported vaccinations. Fears run rampant on both sides of this debate which does not help someone like me who is looking for a true journalistic overview of the pro’s and con’s. I believe this is because the research is lacking but I won’t go into all that now. I did decide to do it and another article I wrote earlier today details that so I will move on.

Over the past 3 weeks, I have been getting used to a new diet as well. My ND did a lot of tests on me, tests I had never had done before using hair and blood samples to test my nutrient levels, allergies, and other stuff related to that. I found out that I am very reactive to a variety of foods, most common of course are the gluten, eggs, dairy, soy, and a surprising number of nuts and grains. Point being, my diet has made a major transformation recently. Even more so when you add in some of the other variables, like how deficient I was in certain things like Lithium, Potassium, Sodium, and I was told that even my Cholesterol was too low even for my body to replace any myelin that my immune system might have taken a bite out of. So the closest mainstream diet to describe what I can eat is the Atkins, though I’m not eating beef, eggs or dairy. Point being, it is frustrating that despite all these good changes, my arm feels funny. Interesting too is that the nutrient deficiencies have symptoms (as seen in the links) that are virtually the same as any symptoms that I have experienced with MS.

Another new part of my life is this monthly infusion that I started last week, and will be getting monthly for at least another 6 months called IVIG. My experience getting started with that was a good one, almost scary, but someone figured out that some of the math was wrong before it became an issue.

Money is still a stress as well, applying to jobs is difficult when I am distracted with the number of doctors appointments and problems on my plate. I’m a few months behind on daycare, and while it is tempting to pull her out, at the same time I certainly won’t be more productive and say a job does come through, that would be a whole new challenge in itself. Not to mention my work involving my passion of building and growing the online MomsWithMS project I started a few months ago, it feels like my destiny and anything taking me away from that, my kids, and telling my story feels like an interruption. Fortunately my husband has had some good leads for jobs which is exciting for both of us. Though when the water heater broke (2 days ago) it was comical how close to being ‘out’ of money we were.

Painting is something that can benefit our situation a lot. I am a graduate of Parsons School of Design and even since before I attended that school, painting has been a way for me to express what I couldn’t communicate with words. I’m working on improving my written language but I am absolutely enjoying the painting. It is funny though, because I decided the other day that what I should do, is paint some paintings with my daughter involved somehow, and sell those on etsy. I have 2 that we have gotten started with, just little 12in x 12in squares with our hands outlined and some different colors of paint. I have not listed nor completed the paintings though because they are so directly coming from my heart that it hurts me to think about sending them to someone else. Though that is the reason we worked on the paintings together was purely to sell them, and she was supportive and actively participating with it, I have a hard time, because for me they are a part of our story, and they are so personal, so impactful to me.

I’ve been told that I’m lucky, and to a point I agree, in the way that I don’t really ever let any of this ‘really’ get me down. I am going to keep working on these paintings, maybe I’ll have to save the first two, and then make some new ones to sell. I have about 6 more mounted canvas to work with and lots of beautiful paint. I’m going to keep writing until my story comes out as well, which I’m just getting started with but I’m having a blast.

I have a secret too…even though I love my peanuts and honey wrapped in a whole wheat tortilla, (my favorite snack that it turns out I’m allergic to), I am loving my limited diet. Most days I’m only eating 2 meals a day, either because I am full for that long from eating Amaranth Meal and Bacon, or because I can’t find anything to eat and coffee keeps me going for a pretty long time by itself. I’m also lucky because my husband actually is enjoying the challenge of making a more limited selection delicious for all of us. Tonight we had some delicious salmon, rainbow chard, cauliflower with my favorite mushroom dressing on it, and some acorn squash that I put cinnamon and blue agave nector on. That would have been enough tonight, but it wasn’t this time, I was pacing through the kitchen wracking my brain to think of something sweet I could munch on. I was fantasizing about some dried dates or something similar to stave my sweet tooth.

Then…I remembered what I bought, for just this kind of a starving sweet tooth moment. See, there is a store here in Seattle (maybe elsewhere too, I don’t know), called PCC. I have been joking about how it went from my favorite, to my only place to shop for food since learning about my dietary limitations. Last time I was there, though I tried to focus on the staples, this little canister caught my eye…pure organic cocoa powder. So my husband and I dug until we found it, and then I followed the directions using my coconut milk, (almond, soy, and dairy are off limits, rice is limited as well), and then added some blue agave nector to it made the absolute best hot cocoa ever. Even better, as the milk was heating on the stove, I found a knife and cut an avacado in half, which I sprinkled salt on and ate before I was drinking any of the cocoa.

Salty satisfying avacado to prepare for the ultimate chocolate indulgence was amazing. Next time I’m going to add a little cayenne pepper though. I used to go get a good spicy mocha all the time at a local coffee shop here but my wallet has told me to not do that so much. Making it was such an ultimate indulgence that maybe some people feel when they cook as well, just knowing exactly what I was putting together, and knowing exactly what I would/could change if the flavor wasn’t quite right was divine.

It was the perfect nightcap.

I have been so excited to watch my recent launch of MomsWithMS.com launch!! We have over 100 members and I have received such nice notes expressing how much they appreciate the community they have found on this site!!

I am looking forward to expanding the site quite a bit to include much more resources as well as links to relevant articles for us Moms who aren’t ‘just’ dealing with kids but also MS.

For me, I feel like I was lucky in a strange way to have been diagnosed so young…I was 18 years old when it all started, that’s when I was diagnosed with a stroke of all things, and after many many tests a heart surgery and more, at age 20 I was diagnosed with Multiple Sclerosis.

The reason that I say I was lucky, is that I found out what I was dealing with, when I was in the midst of getting started with life. I didn’t have kids yet, in fact I was barely in college!! On October 1st 1999 when I went to the hospital for my ‘stroke’ I was in the middle of my very first semester at Parsons School of Design in NYC. I managed to stay in school, though all the medical treatments/tests/appointments I had to go to absolutely affected my GPA, I was determined to not take a year off though because for me it would have been so hard to come back, I knew I just had to tough it out and finish. Which I did, I graduated in May of 2004 along with my class with a degree in Communication Design.

I did eventually of course have kids, my first being born in NYC. That was an interesting situation which eventually led to my becoming a single mom. Technically I always was a single mom as I wasn’t ever married to my ex. The reason that I bring this up, is at first, when I was with him, I felt like I had to stay with him because he had ‘been there for me’ when I was going through all of this medical hell. The relationship had turned emotionally/psychologically and almost physically abusive at this point and I left him when my daughter was 6 months old. At the time I didn’t think twice about it, he’d threatened my life at that point and there was no way in hell I was going to let my daughter see this, she deserved better.

Soon after the prospect of being a ‘dating’ single mom was a bit daunting, though honestly I didn’t think much of it most of the time. I was ‘grateful’ that I was able to filter out the men I dated and the one I eventually married with the disclosure of my diagnosis. That is, I feel, the most beneficial part of being diagnosed when I was young. When I finally got married, I was lucky to know that my husband was fully aware of what he was dealing with, and true to his vows, he has always stayed strong in my times of need and doesn’t bat an eye when I need a little more (or less!) help.

One more quick note, especially to any single dating moms with ms out there…if anyone rejects you…they are doing you a FAVOR. I say this because they are sparing you the pain of getting seriously committed to them and then breaking your heart. They are letting you know that they aren’t ready for that kind of commitment which frees you to find someone who is. I also find that just about everyone I told had some kind of story of their own that they felt made them ‘flawed’ in some way, everyone has their own little secrets and MS isn’t that big a deal unless you make it one.

Back to the point of this post. I am absolutely loving the community that has developed out of MomsWithMS.com and am working hard on making it a much more common and valuable resource for all of us who either are, know, love, or care for Moms with MS. I’m looking into potentially turning it into a non-profit or partnering with a non-profit to make it more official now.

One year ago, I was a 27 year old pregnant newlywed working as a Visual Design for a SaaS company where I’d been working for close to two years. I had a 3yo daughter who was just starting at a new school near my husbands house (which was almost done being renovated) where I looked forward to being able to walk her to school with the new baby the following Spring.My husband had been contracting at a large well known local company doing very well.

Then I think it was either in September or October..all our contractors at the company I worked for got cut. It was a surprise to most of us, we had a lot of longtime fabulous contractors at the time. Soon after was the first layoff, this one was a shocker, we lost about 30 people, and in a company with less than 200 employees, this was a big hit.

My belly started to show soon after this, and when my husbands contracts dried up, my job became ever more important, I was the one providing health insurance to the family and still bringing in a paycheck. My husband started working with an MLM, and I became curious about that as well and started one as well around the beginning of 2009, though barely doing it at all because I was very pregnant and work was wearing me out, as was the commute taking my daughter across town to daycare, renovations were put on hold and so we were still living out of my apartment from before our wedding.

Next was a layoff of 2 corporate employees from my company, two that were considered the best by many and so this was VERY disconcerting. It was not a huge surprise when on February 27th, about a month before my due date, that along with about 30 other employees, I was handed my papers and asked to leave.

Fortunately this is about the time the COBRA package was reduced (thank you Obama!) this meant I was able to afford to keep our insurance which is/was about $375/mo.

A month and a half later, I had my baby girl who we named Hazel. I had her at home along with my husband, mother, mother in law, daughter, 2 midwives and a wonderful doula. It was an amazing experience.

In the meantime my husband has been working on putting together a company, which I should be able to announce soon in another post.

I had been trying to find work, though I do have a baby with me, as I can not afford to put her in daycare wi/out a job. This definitely hinders the job search. Then June was passing…and I started losing feeling and strength in my right leg and arm.

My MS was flaring up. Yes, I am a mother with MS. I started all of the appointments at this point, to the Neuro, the MRI place, the physical therapy, psychology appointments, the steroid treatments via IV in the hospital for five days, the support group meetings and so on. Soon the talks about what drugs I should be getting on soon, if I should keep nursing etc. were piling up. Also through the NMSS and another group I’m a part of for young people with MS I was approached to help start a local Moms with MS group.

I had already been ‘organizing’,though not very actively, another local moms group, unrelated to MS so I jumped at this opportunity!

While setting up the local one through meetup.com I managed to discover that … omg … MomsWithMS.com was NOT registered!!

Skip ahead to today. I am now the founder of the MomsWithMS.com website which currently is a community for Mothers who have been diagnosed with MS to come and share their stories, support each other, and compare notes about the joys and sorrows we experience on our mothering with MS journey. We currently have 99 members and I’m expecting we’ll probably get our 100th member very soon.

We’ll be out of the apartment and into the house by October 1, just need the plumbing, packing, and moving done. Baby Hazel will be 5 months old tomorrow and is a big, smart, beautiful baby who just started saying “Ma ma”, she’s on me as I type this.

I’m taking all these ‘hard times’ as a blessing, yes I’m still broke as heck but working on figuring out how to change that while also growing this community of moms who like myself find great comfort in knowing there are others out there who are going through the same thing and thriving.

If you know any Moms with MS who might be looking for a place they can talk to people who understand, or has questions about anything they have heard. Let them know we exist. Many of our moms are newly diagnosed and are already finding us through google search when looking for information for mothers about MS.

We launched on July 1, 2009. My next milestone is making a public portion of the site where anyone can come and get information about MS and how it relates to families as well as finding resources, though they can be hard to find, they are out there.

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.