Life with MS & EDS

May 4, 2009

MS Walk 2009

Filed under: Uncategorized — by mseds @ 3:20 pm
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Six months ago I never expected that I would have spent this past weekend doing the MS Walk in Ocean City, NJ.  Six months ago I didn’t even know I had MS.  A lot has changed in the past half year.

The first time I heard of MS is when someone asked me to donate to the MS Walk.  I have cousins who do the walk every year and I’ve always donated to their efforts.  Earlier this year I thought about doing a walk, but at the time my girls didn’t know I had MS.  My girls know I’m a crew captain for the Breast Cancer 3-Day and that’s their only frame of reference for a “walk.”  I do that in memory of a friend who lost her life at the age of 35 after battling breast cancer for only nine months.  I still remember when she came to Big Sister’s birthday part in April 2007 and said she had just found a lump while nursing her baby.  From there it was a rapid slide from Stage 2 to Stage 4 breast cancer.  She passed away just before Christmas 2007.  I wasn’t sure how to tell my girls that Mommy has something people do walks for.  I had a difficult time getting past that since they know I do the 3-Day so that other girls won’t lose their mommies like our friend’s family lost theirs.  Even once we told the girls last month that I have MS, I still wasn’t sure how to tell them about the Walk.  I didn’t want them making any connections between the 3-Day and the MS Walk.  Yes, MS is important enough to walk for, but we’re not doing this because it can kill Mommy, because it won’t.

My last MRI is what motivated me to sign up for the MS Walk.  I felt helpless knowing that there are a ton of lesions on my spine.  That was quite a shock after thinking things were pretty good with only 3 spots on my brain.  Other than staying on my daily drug and doing the steroid treatment, there wasn’t anything I could do about it.  Then it occurred to me that there certainly is something I can do about it.  I can walk.  I can ask friends to walk with me.  I can ask friends and family to support me.  Together we can all do something about it.  We can raise money and awareness to fight this for me and the thousands of others like me.  It was empowering to take on this challenge.

Soon after I registered, four friends and someone I don’t even know (a friend of a friend) joined to walk with me.  I was so elated!  It all came together very quickly and in less than a month our team raised $1,000!  As important as raising the money and doing the 4 mile walk (which was a bit of a challenge for me) was the time I got to spend with these amazing ladies.  We’re very fortunate to have access to an old beach house, so we made an overnight of it.  We had great food and great conversation.  A get-away was just what I needed after Day Ten on Prednisone.  Many of the ladies are walking the 3-Day this year, so it was a nice training walk for them.  We even reminisced a bit about our friend who passed away.  She would have appreciated that we had a few laughs when thinking about her.

While it’s hard to fundraise for two important efforts, I decided that I’m going to give it my all and hopefully continue to make a difference for both.  From Mother’s Day through October, I’ll focus on the 3-Day.  Now from October through May, I’ll focus on the MS Walk.  Next year I hope to be able to do VIP Check-In.  We all deserve a world free of breast cancer and free of MS.  I hope I can do my part.


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