ROUND TWO

“He who is not courageous enough to take risks will accomplish nothing in life.”

~Muhammad Ali

It’s hard to believe it’s been a year since I began my journey with Lemtrada. Tomorrow (Monday) I step back into the ring once again, and quite honestly, I’m not as positive as I’d like to be, but hopefully more prepared. They say the benefits of this therapy outweigh the risks, but I sure wish I felt more confident going into the second round (ding-ding-ding!).

Sadly, my body is not as strong as it was a year ago. Lemtrada has really taken it’s toll, and I don’t feel as good physically, mentally or emotionally this time around. I was hoping my body would be stronger and my symptoms would be less severe, but unfortunately that’s not the case. The spasticity in my legs has gotten worse, and my overactive bladder issues are still a real pain in the ass (literally, since the implant in my butt cheek isn’t really doing it’s job). After hearing from many neurologists and fellow patients, I now understand that some people sail through this treatment and some people don’t. Unfortunately, I haven’t been sailing much.

For example, I’ve been preaching to patients the importance of hydrating days before their treatment to help minimize the side-effects of the

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

How I Lost Hope and Found Grace

If you know me, you know that hope is my favorite word. It’s tattooed on my arm, it’s the name of my MS Walk team (Team Hope), it’s in my favorite bible verse (Jeremiah 29:11). It’s also the name I chose for my baby boxer when I brought her home in 2002 at 8 weeks old.

I vividly remember the day that I introduced Hope to my son Jake, who was only 9 years old at the time. I told Jake that I had a big surprise for him, and then walked him into the living room with his hands over his eyes. When we got to the couch, I said, “Open your eyes!” And there was our new puppy laying in a little ball, asleep on the couch. Jake had a look of pure excitement on his face. “Is this Hope, Mama?” he asked. “Do we get to keep her?” He already knew that her name would be Hope, of course.

Baby Hope at just 8 weeks old.

Hope was a huge part of my life, and both my son and I were beyond devastated when she died on Jan. 7, 2014, at 11 years old. Even if you don’t have a dog or have never experienced the unconditional love and companionship one has to offer — something I find very therapeutic for MS — you’ll understand why I’m sharing my story of Hope.

Boxers tend to be a little more on the hyper side and stay puppy-like for two to three years, and Hope was no exception. But that only added to her charm. I potty trained her, took her to puppy obedience class with Jake, and all-around adored my “second child.” When Hope was three, we added another baby boy boxer named Baron to our family. Hope went from being like Baron’s mom, teaching him what he needed to learn, to becoming more like his sister and companion. They were best buddies.

Reality Check: I Don’t Always Love My MS Life

You probably noticed that the name of this blog is “Love My MS Life.”  I’m guessing many of you have wondered how I could be crazy enough to make such a statement. Who loves living with multiple sclerosis?!

I can assure you that I love nothing about MS. But I chose that name because I love life, and I acknowledge that MS is a huge part of my life. I can choose to hate it or I can choose to accept it and love my life the best I can. So I do the latter. Or at least I try.

MS weighs me down. Some days are harder than others to keep a positive outlook.

But the truth is, there are days and weeks when I don’t love my MS life. There are physical and emotional issues I deal with on a daily basis that most people will never understand unless they live with this disease. Many of these things are invisible to the people around me, which can be frustrating and lonely. So I think it’s OK to admit that I often have hard days. Because I know you do too.

Here are some of the issues that I commonly struggle with. I’m sharing them not because I want to be a downer, but because I want you to know that I’m far from invincible. (Feel free to share your struggles or thoughts in the comments section at the end of this post).

1.  Not knowing. No one really knows what his or her future holds. But the uncertainly that comes with living with MS is one of those things that I never really stop thinking about. Will I be walking in a year? Will I go blind before I get to

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.

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?

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?

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.

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

An Old Video, a Little Piece of Me

As I prepare for the big Walk MS event in late April, I’ve been spending more time than usual on the MS Society website. The other day I came across this video — talk about a blast from the past!

In 2005, the San Diego chapter of the National MS Society made the video about my journey living with MS. The goal was to raise awareness by attaching a face (mine) to the disease.

Hard to believe that it was seven years ago, but not hard to believe when I see myself on video and hear my son Jake’s little boy voice. He’s now finishing up his senior year in high school, and is very much a man!

In many ways, this is difficult for me to watch. Not just because my speech was slow and

Why I Walk, and Why You Should Too

Multiple sclerosis is different for everyone.

I have the kind of MS that stole the vision in my left eye when I was 13.

Put your walking shoes on and join Team Hope on April 28.

I have the kind of MS that threatens me with blindness when my “good eye” goes bad, requiring a few days of IV steroids to recover.

I have the kind of MS that required implant surgery so my bladder can empty without having to self catheterize five to six times per day.

I have the kind of MS that prevents me from walking too far without my feet or legs going numb.

I have the kind of MS that makes being a single mom the most difficult yet important and rewarding job in my world.

I have the kind of MS that anyone you know could be diagnosed with tomorrow.

I have the kind of MS that needs to be cured.

That’s why for 17 years I’ve been captaining a team in San Diego for Walk MS, one of the National MS Society’s