Mom Story :: 10 Years Later

Mom Story :: ChristinaIt was June 2004 and I was so busy getting ready for my September wedding that I was planning for almost 2 years. It seemed as though one day I rolled out of bed and could barely stand on my own two feet. I was so dizzy, a very strange light-headed dizziness. Everyone was convinced it was stress or maybe an inner ear infection. I started noticing other weird symptoms…like my right arm would get very cold and numb, my eye would start twitching out of nowhere, and these wierd “muscle-jumping” sensations. Of course when I googled all of this it came up that it was MS, which everyone laughed at and thought I was just a stressed out bride to be on the verge of a nervous breakdown.

After going to an ENT and even getting round of antibiotics (imagine it was that simple!!) I finally went to another doctor who sent me for a brain MRI in fear it was MS or a brain tumor. After the test I will never forget that my films were placed on the top of the pile…which is never a good thing. The next morning as I was in training for my job at the time there was a bunch of calls coming in and I found out that I had 13 legions in my brain and I had MS. It was a very emotional time and I was unsure what my life would become.

My soon to be husband stood strong by my side as well as my family and friends and we made it to the wedding and thankfully I felt good by that time.

I just had my 10 year MS anniversary and will be celebrating my 10 year wedding anniversary this September. I like to think my husband and I have a very strong bond after going through that right before our wedding. Our “in sickness and in health” started before our vows were even spoken. He has never missed one doctor’s appointment or one treatment in 10 years. I have an adorable little boy and a beautiful life. I also am under the care of an extraordinary doctor who has halted the progression of my MS and kept me attack-free for years.

This summer I will start planning my first MS fundraiser, which will take place in May 2015, so I can give back for the many things I have been blessed with.

**Event information coming soon!!

By: Christina Benevento

Talking to Kids about Multiple Sclerosis

As moms who are diagnosed with Multiple Sclerosis this is something that we all deal with. There are of course variances in how and what we share of course too because we are all different. Some tips are published by various Multiple Sclerosis (MS) Organizations as well and will be linked to in this post. Here are some stories and resources compiled from moms on and off our site:

When my daughter asked me what MS was around age 4 I explained to her mommy has little squiggles in her brain that make her do funny things sometimes. She asked if they hurt, I said no and I could tell how much more at ease she was from then on when I was struggling.
-Heather

Another mom spoke of a program offered once where there was an informational session called MS Journey that had therapists and activities to talk to the kids about it in one room, and the caregivers/spouses/partners were in another room. There was a lot of advice and tips for talking to kids given and the adults were able to voice their fears and frustrations. Wouldn’t it be wonderful if this were offered regularly for all of us families dealing with MS?

Some places have some camps for kids too, if you are interested in this contact your local chapters of NMSS, MSAA, and MSF for information.

Pharmaceutical companies have some advice too, for example on MSLifeLines (Pfizer).

Here is one book that is available, written by a mom, Stefanie Lazai to help other moms talk to their kids. You can go to Benjamin and see the book online, and either listen to it, or read it aloud to your child.

Some other books available online as .pdf’s or to order:
Mommy’s Story (from MSAA)
Daddy’s Story (from MSAA)

For older kids they can read about MS and other conditions on this site:
http://kidshealth.org/kid/grownup/conditions/ms.html

Personally I don’t like utilizing these resources, mostly because I have very few symptoms and when I do they don’t usually last very long. I don’t want my children to worry. If anything does come up, I explain to my kids (who are pretty young) that my body is simply not working right, and that hopefully I will feel better the next day. – Kristin

Another great resource is from DoingWheelies.com by Jenn about Tips for Talking to Kids about Disabilities. It is not specific to MS but it is very very relevant for all of us to talk to our kids about this because whether they see it at home or not, it can help them understand.

National Multiple Sclerosis Society has this page set up for families as well: Family Matters.

Please share any tips or resources you have to share in the comments!

Are Antibiotics Leading to Autoimmune Disorder?

What if Antibiotics caused my MS?

Hmmm…patterns?

I realized I had to write about my theories about this after I came across this article:

Bacterial Genome Sequencing Offers Latest Tool Against Diseases – NYTimes.com.

You may have read in my earlier post about my goal to connect Autoimmune Moms, after writing that I was on a mission to learn as much as possible about other autoimmune conditions. It was a late night and I was starting out by writing down as many as I could find, I’d seen headlines that stated anywhere from 60-80+ such conditions existed and so I wanted to get as complete a list as possible. As I was writing, I started looking up information about some that caught my interest and again I started noticing the kind of trends that sometimes make me wonder if I’m either very insightful, crazy, or really really need to get my medical analytics fantasy rolling!

I kept seeing in the descriptions of these disorders that they “might” be reactions to pharmaceutical drugs. I also noticed that there was no real answers to any of them it seemed…it was something that ‘just happened’. For multiple conditions, like MS, it mentions that MAYBE stress or emotional trauma could have impact. In at least one it mentioned….hear this…. antibiotics.

I was talking to my husband Geoff last night about this, and about Quantum Physics/molecular cell structures, (The Biology of Belief) and the history of our dependence on religion as the rule to science, the ways that autoimmunity reflects much of the state of our society, when I realized it could totally be true for me.

Antibiotics barely work with me at all!

I stopped taking them for the most part years ago. I stopped taking them because I realized that I had built up such an immunity that they barely worked, and that if that was the case the more I took them the less they would work. I would in the past get them for something like a sinus infection or maybe strep throat, take the full prescription, and then days later I would notice the symptoms coming back…and then get prescribed a new round of antibiotics.

Realizing this, along with the context of having seen antibiotics listed as a potential cause of another diagnosis made me realize that it could be another potential cause of MS that I totally can relate to.

What if antibiotics caused my MS?

I don’t know. I am not medically trained, if anything I got my doctorate in wellness from my experience over the last decade as a patient nobody could quite figure out, (exposing how little they really know), listening to naturopaths preach wellness, experiencing the results of dietary changes, listening to and reading the stories of the 700+ moms who have joined my site, and of course getting dizzy watching the information flowing through my twitter account when possible.

So anyway, I still can’t prove anything, but once I get this medical analytics project rolling, I will definitely be proven either crazy or right.

I know what I’m betting on!! What do you think? Please comment or tweet your response with a share :-)

The New Flex: Wireless Activity Tracker

This article originally appeared on KristinBennett.com and has been republished with permission.

Moms Diagnosed With MS Tips For Parenting With MS::

Good Morning! Today is Monday the 9th of June and I just saw the latest magazine from the MS Society about Parenting. I wanted to add a post here to collect more tips from the 1,000+ moms who are currently a part of our network of moms who are diagnosed with multiple sclerosis! Please post tips in the comments below!

I’ll start with one of my tips:

“Take care of your body, by that I mean be sure to eat healthy food, drink lots of water, and rest as needed. Things that help me do this are gardening, subscribing to a local CSA and avoiding any food that has a label, I figure the less processing the food I eat has gone through between the earth and my fork the better! I also avoid foods that I’ve shown an immune response to which means a very Terri Wahls like Paleo Diet to help my MS. Some people get the same results by cutting meat out though so experiment! See what works for you, my big things that I avoid are grains, legumes and dairy.”

What are your tips?

2014 Walk MS…have you joined?

We are well into the creation and fundraising of LOTS of Moms With MS Teams for the walk, if you click the NMSS Team link up top of this page you can see the latest numbers!

Have you started a team? How is it going with fundraising? What techniques work best for you? I have heard about sponsorship, asking family, giving things away, donating services that get sold with the profits going towards the walk but I am sure there is more so let us know!!

Walk walk walking at WALK MS 2014!!

Does anyone else want to COOL OFF?

Portable Air Conditioner

Portable Air Conditioner

Does anyone else wish they had one of these? About a week ago it would have been grand…it was so hot here in Seattle, well, for Seattle it was hot. I think back to my days living in NYC…shoot, it was 2005 when I was pregnant and living in a studio with NO AIR CONDITIONING. This thing would have been grand…it’s a portable dehumidifying and cooling unit…does it get any better?

What are you using to keep cool these days?

Love Retweets…(Thanks Montel!!)

On a lark I just responded to a question that Montel Williams posted, in the response I posted the link to our National Team page and guess what?? He (0r his assistant maybe) retweeted it!!

I’m totally psyched, if you want to see it yourself it can be seen here: https://twitter.com/StrawberryTech/status/314457918693068801

While you are checking it out..make sure you see your team listed on our team page if you want to be affiliated with our National Team!! Let me know if you have one and it isn’t listed by posting a link to your team page in the comments below and I’ll see what I can do!

REstart… Walk MS 2013

Alright, so we have been talking about this redesign for a while…it happened a bit more abruptly than planned but here we are, I’m working on it as you are reading this.

2013 has already gotten started in our fundraising world too. Walk MS events are popping up ALL OVER the country and I just signed up for a local team called appropriately “TENacious Moms with MS” here in Seattle. I’m also still managing our National Team as well. If you are not in Seattle and would still like to participate please go to the National page and click the “Participate In An Event” and either join or start a team at an event that is closer to you! I love watching those numbers change, and I’m happy to say that I just got the numbers from NMSS and our National efforts have raised an average of over $20,000/year since we got started in 2010.

I”ll keep working on this site and fundraising for the walk…my goal is $1,000 this time so feel free to come help me out! I would appreciate it…you can donate to my page HERE.

Thank you for your support!!!