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.

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These Are a Few (13, Actually) Of My Favorite Things

I don’t consider myself to be a materialistic person. What I value most in life are my family, my friends, my faith and my health. I also have my hobbies and interests that keep me engaged, like photography, sports, playing with my two boxers — and of course, being a mom.

My all-time favorite junk food item: Jack in the Box tacos! Just 99 cents for two tacos filled with a mysterious soy-beef mixture and topped with taco sauce.

But sometimes, certain “things” can make all the difference on a tough MS day. Or they can make a great day even more joyful! Some are necessities for me; other are luxuries. But all of them make me happy.

I thought it would be fun to share with you a short list of some of my favorite things, even though I realize it may put me at risk of being visualized eating tacos in my pajamas while watching TV and laughing so hard that my cheeks hurt. That doesn’t sound so bad right now, actually!

In the comments section, feel free to share with me your favorite things, too.

Arnica Gel. I use this non-sticky gel after any injection that hurts. This homeopathic wonder eases the pain and helps prevent bruising and swelling of my skin. Any health food store should carry it. I get mine at Sprouts.

Super Soft Pajamas. The softer the better. Oh, and no tags — the tags in the back are just plain annoying.

The Schick HydroI’m a little OCD when it comes to many things in life. One is shaving my legs — daily, sometimes twice. I’ve tried all the women’s razors only to be disappointed that I didn’t get a close enough shave. I’ve happily Continue reading

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Empty Nest Makes Me Ponder ‘What If’

My only child, Jake, heads to college this weekend. And those empty nest feelings are hitting me hard. My little boy who used to wear a superhero cape to preschool has grown into a young man, and I’m wondering where the time went!

My Baby Boy ~ 1994

I cried the morning of his last official day of high school before all the fun senior stuff began. I packed his lunch for what seemed the millionth time, made his breakfast and then sat at the table with him and cried. I was sad that his tininess was gone; that my “job” of being his mom would never be the same.

I’ve heard the term “empty nest” for a long time but I never understood it until now because it wasn’t me having to deal with it. It was just an idea before, and now it’s a reality. I’m going to be on my own. 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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A Sampling of My Summer Madness

Wow, have I had a crazy couple of months! My eventful summer has kept me away from writing for too long, but I’m happy to be back in action on my blog. I’ve missed all of you! Hopefully I can catch you up on what I would have (and should have) been writing about.

Since June, my life has been filled with lots of transition, as well as an amazing adventure for my son — and some MS annoyances that put my life on hold for a little while. But I’ve also had some enlightening moments that have helped me put these ups and downs into perspective.

Jake’s high school graduation, A new chapter begins for both of us.

Everything kicked off with the excitement of my son’s high school graduation. I’m so proud of Jake for working so hard, both in the classroom and on the baseball field, over the past four years. Next month he’ll be headed off to a very well-regarded private Christian University in San Diego, where he’ll continue to play baseball. I’m so happy for him!

But on the not-so-exciting side of things, Jake’s graduation marked the end of child support from his father and other disability payments that had been a big help to me financially. So I’ve been putting some time into looking for flexible jobs that will make up the difference. Money is always a big source of stress for me, as it is for so many people, so this has been heavy on my mind.

So, back to my summer of craziness…two days after Jake’s graduation, Jake and I and my dad headed to the East Coast for lots of baseball and traveling. Jake was invited to play with the U.S. Military All-Stars baseball team on its Red, White and Blue tour. My dad and I went along for the ride (and to take a lot of photos!), making stops in Rhode Island, Cape Cod, Martha’s Vineyard, Boston and New York.

A lot of the players serve in the military and choose a word or phrase for Continue reading

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10 Things I Learned at MS University

I’ve been thinking about adding some initials after my name, just like physicians and scholars. Tricia Chandler, MS. Looks good, doesn’t it?

While I do have MS, I don’t have an M.S. (Master of Science). In fact I don’t have an official college degree of any kind. I really wish we could earn degrees through real life experiences, not just from a university. Wouldn’t that be great?

Smile

Dean Chandler requires every student enroll in Don’t Worry Be Happy 101.

If that were the case, I think I would already have all the credits I need to be a psychologist, a nurse, a nutritionist, a pharmacist, a teacher, and a pastor, among many other things!

Even though I don’t have any letters after my name to prove it, my real-world education — particularly the part that involves having multiple sclerosis — has not only made me smarter, but it’s also given me some valuable life perspective.

I’d like to share what I consider to be some of the most important things that I’ve learned.

1. Laugh as much as possible! It really is the best medicine out there. And it’s free. Seek out people and activities that will make you laugh. Be goofy.

2. Have faith. Instead of asking why God gave you a disease (or some other condition you didn’t ask for), ask for the strength to help you fight it. Use your spirituality to get you through tough times and be thankful for everything you have. My faith has saved me so many times. Continue reading

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More Than Just a Neurologist

With my neurologist of 17 years.

When you have multiple sclerosis, you need to have a great neurologist. This is not an area where you can compromise.

Whenever I’m speaking with people who are newly diagnosed, one of the first questions I ask is whether they like their neurologist…”Is this a doctor you trust? Someone you can communicate with easily and openly? Someone you like as a person?”

If they answer no to any of those things, I tell them to find a new neurologist. Immediately.

Your neurologist is your partner in fighting MS and someone with whom you must feel comfortable at the most uncomfortable of times.

I was fortunate to meet my neurologist, Dr. Thomas Chippendale of The Neurology Center in San Diego, the week after my primary care physician told me that I had multiple sclerosis.

My first visit to his office included a spinal tap, a.k.a. lumbar puncture. My dad drove me to the appointment with my then-9-month-old son Jake, and they waited for me as I went in Continue reading

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I Really Need to Pee!

Let’s talk bladders. It’s a big topic on my mind right now because in the last few weeks I’ve been feeling the effects of bladder dysfunction — an MS symptom that’s plagued me since my early 30s.

I’ll admit that this isn’t something I love to discuss, but it’s an important issue because so many people with MS deal with it. The National MS Society says at least 80 percent of people with multiple sclerosis have bladder dysfunction. It’s invisible and uncomfortable. And unless you experience it, it’s difficult to comprehend the physical and emotional toll it takes on you.

Before I get into my personal story, here’s a quick explanation of bladder dysfunction — if you don’t mind some nitty gritty details. When people with a normal, healthy bladder feel like they have to pee, they can hold it until they know that they really gotta go. Then they can hurry to the toilet and Continue reading

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A Message That’s Worthy of the Share Button

In honor of Multiple Sclerosis Awareness Week, March 12-18, I’m posting this well-made video that I hope you will share with your sphere of contacts! The message is so true: Almost everyone knows someone with MS, whether they realize it or not. More than 2.1 million people in the U.S. are living with this disease, and there’s a new diagnosis every hour of every day. MS really does impact us all.

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My Radio Interview: A ‘Bedeviling’ Disease

Last weekend I had the chance to share my MS story on the radio. It was a great opportunity to shed light on multiple sclerosis for listeners who aren’t familiar with the disease and the dire need for a cure.

The local San Diego radio show “Community Connection,” which airs on KOGO 95.7 FM/AM 600, invited me and my friend Richard Israel, president of the National MS Society’s Pacific South Coast Chapter, to answer some questions about the “chronic, unpredictable and disabling” disease. If you’d like to listen to what I said, here’s a link: March 2012 KOGO Radio Interview.

The interviewer correctly noted that people with this disease often live for decades with symptoms before they finally get their diagnosis. For me, that was certainly true. My symptoms started 11 years before my doctor told me I had MS.  I was a freshly-minted teenager when I was diagnosed with Epstein-Barr virus and lost the vision in my left eye, part of my ongoing journey of chronic optic neuritis. Continue reading

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