Kristin Bennett

This is my second week back into getting my groceries delivered again…way back when I lived on Alki I used to love them a LOT, then I met this guy who I married who loved grocery shopping. But with his work hours increasing and grocery hours decreasing…I know where to turn!!

I love it and I’m glad they are still around and even better!!!

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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)

This book is one I picked up about a month ago when I saw it at Barnes and Noble, I don’t recall which one but I remember seeing it featured, the author was going to be at an event in Seattle! University Village is where the signing was and though I didn’t make it there as I was in the midst of my Flare I was there soon after and was able to pick up an Autographed copy.

It caught my interest of course because I had JUST been at the symposium which talks about a lot of the same issues and how to deal with them. I immediately scanned the table of contents and the index and was VERY happy to not see much/any attention being given to the option of sending ones child away. There is a lot of great tips and examples about how specifically to and NOT to interact with ones child when there is a difficult emotional situation.

I’m just over halfway done and I absolutely recommend the book! I really like that it is more modern and relevant than the ones I have seen from my parent’s old collection from when I was a tween…which of course I felt were gross over-simplifications. This book is good general advice for dealing with anyone who is loved and going through a hard time.

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…

I started reading this book about a week ago, I’m not done yet but really want to talk about it anyway. I picked it up as the sole book I purchased on a day that I wrote down about 20 titles of books that I ‘want’ to read at some point…I’m recently obsessed with psychology, self help, normal (I’ll explain in another review), parenting, Multiple Sclerosis and Alternative Healing. I ended up losing that list of books that I so wanted to read but at least I bought this one, to remember that day by. Sleepless In America.

So far I’ve learned that YES…my family and definitely I am lacking sleep…personally I know that I am because that was a HUGE part of what led to my recent flare-up that I am still getting over. It was interesting though because I could see some examples of my daughters in there as well and I think what I’m most grateful for is the healing ‘what to do now’ kind of information and stories that are being shared. I don’t think we give the girls adequate time to sleep. I think for me it was a lazy/being ‘cool’ about it hing where I sympathized with my daughter (4) who wanted to stay up with me, and she is so persistent that I figured I might as well let her stay up and just go to bed with me (yes we co-sleep) and so life happens, she’s still with me and most nights staying up late enough that I fall asleep or at least get too tired to get back up by the time she falls asleep.

I’m absolutely always up for doing what is best though, for me and for her, at least when I am SURE that it is the right thing… I have been a nag for a while about how we need a routine evening schedule for the girls, but now I MEAN it. I think a huge part of what I love about this book is that a lot of it gives me back up to things I either learned and forgot the source of or just intuitively knew that I had a hard time rationalizing to both my husband and myself.

So now we’re on the journey to us all sleeping better, tonight is the first night that both girls were asleep AND both adults emerged awake (hence me writing this at almost 11pm). It was very sweet, I got her to let me leave by letting her wear one of my socks and promising I’d be back to snuggle after I finished some work. I haven’t gotten to the baby part yet, that’s hard, she’s on me sleeping now so hopefully I’ll learn some insightful tricks on this one…

Hope you have a lovely restful night!!!