Monthly Archives: January 2012

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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Single Mom With MS

Proud Mama ~ 1994

I’ve been a single mom for a long time. It’s very much a part of my identity. My former husband has always played a role in our son’s life, which I’m so thankful for, but on a day-to-day basis it’s just me and Jake.

Sometimes I wonder if MS is part of the reason I’m a single mom. I recently came across a really interesting article online that cited a study showing that divorce and separation rates are consistently higher among couples in which one person has a disability or chronic illness.

The study, by the Fred Hutchinson Cancer Research Center, found that 96% of breakups among couples with MS involved a situation in which the woman was the person living with MS. Yes, the rate of MS is higher in women, but that percentage is Continue reading

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The Very Best Medicine

MS wiped me out last Thursday. It started when I woke up, feeling like my energy had been stolen from me. I rarely suffer from the extreme fatigue that a lot of people with MS deal with every day. So when it hits me I don’t take it well. I’m grateful I’m not experiencing it day in and day out, and I have great sympathy for those who do.

On Friday I made it out of my house, still not feeling great, to meet with a friend and get some work done. As we chatted, I laughed…and realized how much I had missed laughter the day before when I was feeling miserable. Laughter felt so good!

So I put together a short list of some funny videos that Continue reading

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The Mystery of Multiple Sclerosis

No known cause, no known cure.

That’s one of the frustrating parts of living with MS.  In the United States today, there are approximately 400,000 people with multiple sclerosis, and 200 more people diagnosed every week, according to the National MS Society.

Worldwide, MS affects an estimated 2.1 million people.

Whether you’re new to the world of MS or you’ve been here for decades, like I have, it’s good to be armed with answers to people’s questions about the disease.  While there is a lot of uncertainty, there is also Continue reading

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How I Got the News

If you have MS, you probably remember very well the day you were diagnosed. This is my story.

I called my primary care physician’s office on Wednesday to find out if they’d received the results from the MRI that I had done on Monday. The receptionist told me in her cheery voice:  “No news is good news!”

By Friday, I was ready for the weekend and couldn’t wait to finish work and get home. I had plans with my husband at the time to go to a Social Distortion concert — a rare night out alone without our baby.

After I finished getting myself all ready for my evening plans, the phone rang. Standing in my kitchen with my 9-month-old son Jake on my left hip, I answered. It was my doctor. Why was he calling so late? Without hesitation he asked, “Are you sitting down?”  Continue reading

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Inked in Hope

Everybody needs hope.

My favorite word is hope. Anyone who knows me well, knows that’s my word. About two years after my MS diagnosis, I clung to that word knowing that I needed something to get me through the tough times that were ahead.

My favorite verse from the Bible says: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to  harm you, plans to give you a HOPE and a future.” ~ Jeremiah 29:11

I named our boxer puppy “Hope” nine years ago.

I named my MS Walk Team “Team Hope” in 1999.

People have asked me before what I’m hopeful for. I hope for a cure of course. But I also hope that I don’t lose vision in my one good eye. I hope that I can one day see and play with my grandkids. I want to be able to walk, travel around the world, and continue my Continue reading

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What Is Love?

I made up my mind late last year. I was going to start a blog. I’ve never blogged before, but I’ve also never had a problem sharing my honest opinion and thoughts with people, especially people like me who have multiple sclerosis. I’m pretty much an open book — there aren’t many topics that are off-limits.

But why go public with a blog?

As part of my role as a patient advocate for an MS drug company, I’ve been talking with MS patients for years — hearing their concerns, sharing my stories and letting them know in some small way that there is a reason to have hope for the future (even though that’s technically not part of the job description).

As you probably know, living with MS or any chronic disease is anything Continue reading

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