More than a community…is it time?

MomsWithMS.com has existed as a private peer support community for over five years at this point. We have over 1,100 members on the site. I (Kristin) created the site on a whim that there was probably other moms out there diagnosed with MS that might be feeling alone, and be desiring a person to talk to who could relate to the joys and struggles of parenting while dealing with MS.

Up until now the whole MomsWithMS.com effort has been just that, it is an online community supported by @MomsWithMS, a Facebook page, and also spearheading the Moms with MS fundraising team for the National Multiple Sclerosis Society.

After this much time though needs have become clear, for example getting a babysitter (or money to pay a babysitter) so that one could get an MRI. I have even gotten phone calls from the article published a few years ago by MSAA from women who didn't have access to a computer. Finally there have been MANY calls for help with things like housekeeping which is especially hard for a mom with small kids and a disability to maintain.

It would be nice if we could just "give" what is needed to all of these moms. Currently the community site as well as this site is funded as a "hobby" with expenses of approximately $50 a month to maintain. If we could however become registered as a non-profit we could run real fundraising campaigns to not only keep these sites up but to start offering some of the needs that are very real to so many of the 1,100 moms.

Problem is, up until this point, the majority of keeping all of this going has been on Kristin with a people stepping in to help host events, run fundraising teams and of course everyone participating on the community website.

If it were up to you, would you support the movement to turn this small little sole prop/hobby into a non-profit? Do you have the skills, passion, social reach and determination to help make this happen?

If you answer is YES to any of those questions, please contact me at Kristin@MomsWithMS.com and let me know your vision and how you could help.

Thanks for reading! If you really want to make this happen please share this with anyone you know who could be helpful in making this happen.

Happy Holidays!

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.