My Bitch of a Bladder

I should start by clarifying that if I’m upset with any part of my body (referring to it as a bitch), it would be my brain, since my neurological disease has been wreaking havoc in different parts of my body for a long time. I’m writing this in case there is someone out there that is dealing with some of the same issues… maybe knowing someone else feels your pain can be comforting.

I have written about my bladder issues for many years. I Really Need to Pee! was written way back in April 2012, and SomeONE with MS talks a lot about the invisible symptoms living with daily bladder inconveniences. My symptoms were initially urinary dysfunction/retention, which meant I wasn’t able to empty my bladder completely, so I’d end up with countless bladder and kidney infections.

After a few failed attempts to “dilate my urethra”, and many years of having to self-catheterize, I had surgery in 2005 where an implant (a pacemaker-like device) was effective in helping my MS brain send signals to tell my bladder to empty. It helped me for many years, but bladder issues have been prevalent in my journey with MS for as long as I can remember. Since that initial surgery 11 years ago, I’ve had four more to replace it or to change the battery.

Last year I started having a different kind of problem with my bladder. Continue reading

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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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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 (8 weeks)

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.

Continue reading

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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.

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 Continue reading

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Gallbladder, Schmallbladder

Multiple sclerosis takes its toll not only on your health, but also on your wallet. And because it’s such an unpredictable disease, you never quite know when you’re going to be hit with a new round of huge medical bills. I was reminded of this reality yet again in late October, shortly after having finished one of the most exhilarating accomplishments of my life: the National MS Society’s Bike MS Bay to Bay Tour 2012.

I felt so liberated and proud that I finished the 100 miles in two days…despite the rain, wind and cold that we had to endure during the ride to “sunny” San Diego. I felt very healthy, albeit a bit tired and sore, after the ride. Most of all, I felt blessed to ride alongside an amazing team.

Five more incisions/scars added to my belly.

Goodbye, gallbladder! Hello, new scars.

My health took a turn for the worse just eight days later, when I felt pain on the right side of my belly. Thinking I must have pulled a muscle, I didn’t pay much attention to it. It was 100 miles after all; pain is to be expected, right? But the pain got worse, and later that afternoon I drove myself to an urgent care center. The doctor initially thought it was either appendicitis or a cyst on my ovary. After a slew of tests, however, I learned that my gallbladder was sick, inflamed, full of stones and would need to be removed. What?! Where did that come from?! 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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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?

Continue reading

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