Category Archives: Public Perception

Some”ONE” with MS

They say when you meet someone with MS; you’ve met someONE with MS. Each person that lives with the disease has different symptoms and reacts differently to treatments/therapies. That’s important to know. A lot of people who I meet tell me about their Aunt who had MS, so they expect me to look like her (maybe she was confined to a wheelchair most of her adult life). When I don’t, it’s confusing to them. Or, I get, “But you don’t look sick”, because I’m walking OK right now, and most of my current symptoms are invisible (but chronic).

I’ve written about the struggles I’ve had with my bladder in a previous blog post titled I Really Need To Pee . It was a good overview of how MS affects my ability to pee (or not pee) when I need to. Continue reading

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Change Is Good

It’s been a while since I posted on my blog. I’ve wanted to, and have had plenty to share, but you know how it goes, life gets busy. So here I am, to give an update about how I’ve been loving (or disliking) my MS life.

After Dr. Chippendale, my neurologist of 20 years, passed away from an aggressive cancer last April, I knew it was going to be impossible for a new doctor to fill his shoes. That being said, I’m doing my research and refuse to settle for a neurologist that doesn’t have a wonderful bedside manner and knows his/her MS. Period. I’ve always preached to fellow patients about the importance of having a neurologist that is not only trustworthy and knowledgeable, but someone they would consider a friend. The relationship you have with your doctor will be one of the most important relationships you will have while battling this dreaded disease.

The last time I was examined by Dr. Chippendale, it was determined that my MS was “worsening”. I knew I had been dealing with some new symptoms Continue reading

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Me and My Optibike: The Ride of a Lifetime

Fancy, huh?! This is not the actual bike I’ll be riding, but it’s pretty close!

I’m going on a little bike ride in a couple weeks.

OK, it’s not a “little” bike ride — it’s a very, very long bike ride. In fact, the longest bike ride of my entire life!

I’m talking about a 100-mile ride along the Southern California Coast, from Orange County to my hometown of San Diego.

It’s the National MS Society’s Bike MS Bay to Bay Tour 2012, Oct. 20-21, and it’s one of the society’s biggest fundraisers of the year. More than just collect cash for the cause, the event also raises public awareness, which is so important to me.

Usually I participate in the event simply by being an “inspiration” for my longtime friend Matt’s team, Land Rover San Diego. Of course, I’m flattered by this year after year and I’m so proud of what the team accomplishes — Matt puts in so much work as team captain! I also serve as one of the MS Champions for the event, sharing my MS story and providing a face to the cause for riders who don’t personally know someone with MS.

But this year is not like the rest. I am actually going to ride.

Continue reading

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Jack Osbourne’s MS Diagnosis, and the Fine Line Between Hope and Reality

I’m not too happy with the recent People magazine cover featuring Sharon Osbourne and her son Jack Osbourne, who recently found out he has multiple sclerosis.

The magazine’s cover headline blares: “I Won’t Let My Son Die.” That’s followed by a promo for the exclusive interview: “Sharon and Jack Osbourne on the diagnosis that has the 27-year-old fighting to save his vision, his future and his life.”

My message to Sharon Osbourne: Multiple sclerosis is not a death sentence!

A little over-dramatic? I’d say so.

I know that the publishing industry is in a sad state today, and headlines like that help sell magazines. But I just hate the impression that such sensational cover language can leave on readers — especially people who are newly diagnosed with MS (about 200 people get the diagnosis every week) or those who know nothing about the disease.

Those people can easily think that MS is a death sentence, and that’s a perception I’m always fighting to change.

As a mom, I can understand how devastating it would be to find out that your child has MS. But come on, even if MS was imminently deadly, what is Sharon Osbourne really going to do to stop her son’s disease?

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My Red Bikini Dream

I have this recurring dream.

I’m in a large public pool with people everywhere, and I’m wearing a bright red bikini. I’m thinking that I look pretty hot as I start getting out of the pool. I slowly walk up the steps to return to my lounge chair, with plans to sunbathe.

But suddenly water starts spewing out of my body through my past injection sites. It starts out with just a few spots on my arms and legs, but soon there are hundreds, maybe thousands, of tiny fountains that have sprouted out of every part of my body.

I try to stop the water by blocking the little holes with my hands, but it doesn’t work — there are too many! Everyone is staring, and I’m completely mortified. I’m tempted to scream “It’s from my shots!” to all the people pointing and laughing at me…as if anyone would understand what that means!

At that point, I usually wake up in a panic and check Continue reading

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Blue Space Blues

I get quite a few invitations to Disneyland every year. And I’m always really popular during Christmas shopping season. I know that I’m super fun to hang out with — and maybe I’m being skeptical here — but I have a feeling that my blue disabled person parking placard might have something to do with it.

Not that I blame anyone for inviting me; I know those lines at Disneyland can get really long!

Yes, there are some perks of having that blue placard. If you have one, you know. But if you’re like me and your disease is invisible most of the time, then you probably also know the major disadvantage: dealing with strange looks, and occasional rude comments, from people in the parking lot who see you get out of the car and walk toward your destination like anyone else.

My disabled person parking placard.

Yes, it is possible to be disabled and not “look” handicapped!

What they can’t see is how I feel inside, whether it’s my heavy legs, aching body or throbbing head. Sometimes it’s my immediate need to pee, something that could happen if my bladder implant isn’t Continue reading

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