Kristin Bennett

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.

So, we left the house, in the car, baby in back, kitten in the cat carrier in front on our way to pick up Kenzie my 4yo daughter. If you missed yesterdays post this is a feral kitty, who came to us last night, and we decided to take it to a no-kill test/alter/release or adopt clinic after picking up our daughter so she could be a part of the process of saving kitty.

So we got to the school, I went in and had to stop and talk to the owner of the daycare for a little while. We are behind in payments and it’s getting to a breaking point, our only income is my unemployment and we don’t qualify for any assistance programs because we aren’t both ‘working’ when in reality, hubby and I are both working like CRAZY to make some money, there just isn’t any money yet, we’re also both applying to jobs like crazy but what is on the news is true in that it isn’t as easy as it once was to get a job. Verdict was that I promised to go try and apply for a DSHS Emergency Childcare Assistance and after that, if it was denied again we would try to file an exception with the city, as there is a special program for all pre-k students to keep them in school. It’s an odd loophole that we are in because we don’t have real jobs and so our work counts for nothing and these programs require working parents.

So I pick up my daughter and explain what we are doing, and then we all get in the car and drive on up to the clinic which is a great little place that seems like it is run 100% on love and donations so if you have any kind of soft spot for this kind of work please donate because they need it. Their site is: http://animaltalkrescue.org/help.html We brought kitty in, and the lovely lady there who has seen soo many cats come and go gave us her sad evaluation which is that the kitty seems to have the symptoms of distemper, and would likely not be living much longer. Fortunately K was having fun playing with the cats who were up for adoption and looking at the birds, lizard and other fun animals they had visible as well. I think she was hungry at this point as well because she didn’t seem too overly concerned.

We left the kitten with them, they will keep an eye on it and let us know if it survives/dies and hopefully it will live and if that is the case it will get fixed and vaccinated. We will keep or release the cat at this point depending on it’s temperament, they explained even letting it go will help reduce the feral cat population because the cats get territorial.

Also, we became pretty passionate about the cause, there are at least 2 other kittens in the litter this kitten came from and of course the mother cat as well. We are borrowing 2 traps from the center and will be trying to catch the other kittens to get them all taken care of. This is of course if they are still around, we have not seen them since we brought in yesterday’s kitty which is either because they too have distemper and aren’t moving much or hopefully just because it is raining and they have found some safe place to stay.

All in all it was an enlightening experience, I think it is very sad that the kitten will probably not make it but feel good that it will be somewhere safe and warm surrounded by loving people in it’s last hours if that is the case.

Kitty came to us when in pain, was crouched on our front porch and did not fight us much when being put into the kennel. We feel strongly this was for a reason of course because we are like that and we are grateful that we had the experience of helping this kitty, and of course we are hopeful we can help the other kitties as well.

I have joined in the movement called 29 Gifts recently and yesterday was day 2, I’m considering this rescue effort as my gift of the day yesterday, giving the kitten a chance of living and of sharing the concept of rescuing animals with my daughters, one of which will remember but the other one will just hear the stories.

Here are some pictures, the first is our cat Bello, who doesn’t seem to really know what is going on, and the following is the rest of us getting ready for our adventure.

I will follow up with any more Kitties or the Mom Cat if/as we get ahold of them…I’m hoping we’ll get a kitten that we can rescue and keep too! They did say that they are about 5-6 months old and probably domesticate-able still.

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.

Today at church, I learned about a great organization called “Heart Strong” that I feel aligns closely with what I’m passionate in regards to CAFETY and ASTART focusing on the gay and lesbian youth population…so important!! Their site is: http://www.HeartStrong.org I had the honor of meeting Marc and hope at some point to have written a book of my story just like he has. Soon I will have a “Causes” page on my site featuring what organizations I support and why. They will be on it for sure.