An MS-kind of Lucky

Mar 6, 2015 by

This week is MS Awareness Week (March 2-8) and I’ve been trying to figure out what to say about this disease that I haven’t said here before. Last year, I shared with you the story of my initial episode and diagnosis with multiple sclerosis.

A year later, much of what I wrote about how MS is affecting me is still true. No relapses for me (yay!) and my MRI last month showed no changes in my brain (double yay!)

But even with that great news, MS still manages to take a toll. My fatigue these past few months has been the worst since my diagnosis. There are just some days that getting dressed and getting to work feels like the equivalent of scaling Mount Everest. And that just sucks.

Those are the days I don’t feel like a Lucky Mama. Those are the days where I want to curl up and cry and mourn the life I used to have. Those are the days I feel like a failure because I don’t have the energy to play with my daughter. Those are the days I allow myself a little pity party.

But then I remember that I am a Lucky Mama. I can still walk; I can still work; I can still see; I can still muster enough energy to take my child to the zoo on good days. I think of my friend Dawn who suffered a terrible MS relapse last summer, followed by a stroke. Those two events put her in a wheelchair and made it terribly difficult for her to speak. But she hasn’t given up — she is fighting to walk again and be able to again speak publicly about life with MS. And I believe that she will.

I think of other friends who fight MS every day — and never give up.

I remember that I have an incredible support system. My husband, my daughter, my parents and sisters and their families, my husband’s family and my friends — all have encouraged me every step of this journey. Thanks to a Facebook support group, I have met people who have no support from their family and friends. They are navigating MS on their own — I can’t imagine how difficult that must be.

I also remember that I have my faith — and that no matter how cruddy I feel, God is always there to listen to me and help pick me up.

So on those pity party days, I have to remind myself that I am one Lucky Mama. And I want to thank everyone who plays a part in reminding me of that.

Sometimes Lucky is Just a Matter of Perspective -- even with MS

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When I Walk

Oct 10, 2014 by

Jason DaSilva is a documentary filmmaker who was diagnosed with primary progressive multiple sclerosis when he was 25. Trust me when I say in the wide world of MS it really doesn’t get worse than primary progressive. It is fast, aggressive and debilitating.

To understand his disease (and help others understand too) he did what he knew to do. He made a film about it.

When I Walk was filmed over seven years and shows how a very active young man very quickly found himself in a wheelchair. He tried various treatments — nothing worked. There are drugs for those of us with relapsing-remitting multiple sclerosis. The drugs don’t offer a cure — but they can buy time. There are no treatments for progressive MS. There is nothing to stop the effects of a terrible disease.

But the film isn’t all sadness. During the seven years DaSilva is shooting and editing When I Walk, he falls in love and gets married to a woman named Alice whose mother has MS. They struggle with his disease and the constant demands it makes on them. But they find happiness. They try to have a child and Alice suffers a miscarriage. But at the end of the movie, Alice is pregnant.

Yesterday (Oct. 9) on Meredith Vieira’s talk show, the world met Jason and Alice’s 18-month-old son, Jase. You can watch the interview here.

It was wonderful to see the newest member of the DaSilva family.

When I Walk is a difficult film to watch. It is raw, it is painful, it is real. There are highs and there are lows. But at the end of the day, Jase is a very real reminder that MS doesn’t win. Life goes on. 🙂

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Wordless Wednesday: A Vintage Affair

Oct 1, 2014 by

Heidi, Jennifer (and Nick) and I got dressed up Sept. 25 for A Vintage Affair, benefiting the National Multiple Sclerosis Society. It was a wonderful night for a very worthy cause. Thanks to the generosity of attendees, more than $37,000 was raised to fight MS — and to find a cure.

Glow sticks at Vintage Affair

Heidi and Nick hold up glow sticks to indicate their connection to MS. You can see all of the people holding glow sticks behind them. Everyone at the event was connected, in some way, to the fight against multiple sclerosis.

Vintage Affair

Two MS Warriors — Jennifer and I smile for the camera.

Friends at A Vintage Affair

Jennifer, Heidi and me at A Vintage Affair. Heidi has been one of mine (and Jennifer’s!) biggest supporters during our fight with MS. Thanks so much, Margarita Mama!

Marla and Dawn at A Vintage Affair

Marla and Dawn are both looking gorgeous in red! Dawn had a rough summer, thanks to the MonSter. But she was determined to attend A Vintage Affair — and she did, looking as lovely as ever.

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Orange You Lovely 2014

Jul 28, 2014 by

Saturday was the 2nd annual Orange You Lovely MS Fashion show. Once again, 312 Boutique in Benton agreed to provide clothing, jewelry and shoes for the models! YAY!

This time, we went out to Saline County and walked a runway at the Benton Event Center. It was a wonderful facility!

And wow, did we have an incredible silent auction! I was thrilled to go home with a beautiful hand-crocheted afghan made by my friend, Rachel! She let me come pick out one of her handmade afghans for the auction — I loved the one I picked out so much that I had to win it. No one else stood a chance. 🙂

So many thanks to the ladies on the committee who planned the whole shebang — Marla, Judith, Tonya H., Sheena, Jennifer and of course, Lisa! What are we doing next year? 😉

Alaina gets her model pose on

Alaina gets her model pose on

Alaina practices on the runway

Alaina practices on the runway

Yes, that is 7 on Your Side's Jason Pederson -- he is an awesome emcee

Yes, that is 7 on Your Side’s Jason Pederson — he is an awesome emcee

Jenn didn't know she was getting an award -- SURPRISE!

Jenn didn’t know she was getting an award — SURPRISE!

Nick congratulates his gorgeous wife

Nick congratulates Jenn, his gorgeous wife

Julie didn't know she was getting an award either! Are we sneaky or what?

Julie didn’t know she was getting an award either! Are we sneaky or what?

Marla gets sassy on the runway

Marla gets sassy on the runway

Channing, Marla's daughter, struts her stuff! Tonya from 312 is in the background.

Channing, Marla’s daughter, struts her stuff! Tonya from 312 is in the background.

Cindi is all smiles

Cindi is all smiles

Christina and her beautiful girls

Christina and her beautiful girls

Alaina for MS awareness

Alaina for MS awareness

Jenn and me

Jenn and me

Matt, Alaina and me

Matt, Alaina and me

Our gorgeous models

Our gorgeous models

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Walk MS rocked!

Apr 21, 2014 by

All of the blogging experts tell bloggers that we should never begin a post by apologizing for not posting more frequently. Well I’m going to break that rule today because I have been a bad blogger. I can’t remember the last time I wrote a real post, egads! My excuse is that life has been hectic and I just haven’t had time to write.

One of the reasons life was so hectic is the subject of this post. The Central Arkansas Walk MS was held Saturday, April 12 in Little Rock’s Riverfront Park. This was my second year to be part of the planning committee. There are 5 of us — Jennifer, our chairwoman; Marla, our media person; Judith, our volunteer wrangler; Chris, the man in charge of food; me, the woman in charge of Kids Zone, the photographers, Pet Zone and Team Village — plus the National MS Society’s Arkansas event coordinator, Lisa Fink, and the rest of the office staff, Carla, Brooke and Kristin!

The walk is a major fundraiser for Arkansas’ National MS Society office. The funds we raise help people in our community who suffer from multiple sclerosis. Those dollars also go to research as the MS Society tries to find a cure for this disease.

This walk is a labor of love for everyone who works on it. It is hard work, y’all. But it is so worth it when you see people grinning at the walk. When you see kids carrying signs that say they’re walking for mom. When you read the list of names on the chalkboard — names written by people who are walking for someone they love who has this disease. When your family, friends and coworkers show up on a Saturday morning to support you (I love Team Word Herders! You guys are awesome!)

And it is definitely worth it when the walk raises about $110,000, followed by about $60,000 in NW Arkansas at their walk!

So thanks to everyone who supported our efforts this year! Team Word Herders has raised $5,400 so far — and we’re not done yet.  To everyone who helped, I hope you realize that you are a part of something really special — and we really appreciate you!

Of course this is where I’ll put a couple of fundraising plugs. If you haven’t given yet and you want to, please consider making a tax-deductible donation. Here is a link to my fundraising page.

If you’re on Facebook and you feel like shopping, then check out Team Word Herder’s auction page. This week and next week are the last two auctions for a while, so be sure and check it out!

Of course, no post about the MS Walk would be complete without some lots and lots of pictures! Enjoy!

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The MS Rap

Mar 8, 2014 by

This is a pretty awesome rap about multiple sclerosis. There are a couple of exaggerations, which are noted in the video, but still a pretty good explanation about the disease.

 

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