Girl with MS - Tips & Tools for Thriving with Multiple Sclerosis

Plan B necessary for those with chronic illness.

Living with multiple sclerosis is as random as a snowflake. No two the same. No two days the same.

Every morning when I wake up, I thank God. Thank him for my wonderful life and all the blessings bestowed upon me. Even despite having MS, it's best to focus on the positive.

In addition to my gratitude, each morning is met with a body and mind analysis: how's the pain? The cognitive fog? The fatigue? What's the weather like? On a scale of 1-10, with ten being the best, how is my ms?

Once that's determined, then I can make plans. But wait! This isn't fair. How can one live if they have to wait every morning to see how they feel? Where's the spontaneity? How does one avoid being called flake of the year if plans have to change?

Plan B!

Yes, as simple as always having a plan B can make all the difference in the world.

Plan B can be simple or complex. Most importantly it's an option that is doable with ones multiple sclerosis, or ones limitations.

Just a couple of weeks ago I had a big event. The Los Angeles County Trailduster ride with Supervisor Mike Antonovich. Almost six months in the planning we were expecting over 120 horses and guests to our little community. So, I better get ready!

My concerns for the ride: Heat, balance, urinary problems, pain.

I hadn't ridden in about a year so I borrowed a friends horse and stretched the old legs out. And boy did it feel good!

The day of the ride came. The weather was predicted for light showers and highs of 82f. I can do that! Plan B for warmer weather included chillin vests, cooling scarves and bags of ice. But I don't need any of it. The weather cooperated.

As far as the bladder goes, I rely on a pee pad and told myself to take advantage of the halfway pit stop on the ride. Last time I didn't and when I got back to the barn, peed all down my pants. Didn't want to do that again!

Balance issues. Well, I don't have control over this issue but when I got on the horse I felt fine. My plan B for this issue was to either not ride or take a slightly shorter ride.

With several Plan Bs to help my day, I approached the ride with confidence knowing that whatever I ended up doing, it would be a great day.

Me on my trusty steed, Roper.

Caroline Craven and County Supervisor Mike Antonovich

Local charros waiting for the ride to begin.

Parks and rec, city officials, trail boss from La Canada Flintridge

The fact is, our lives are ravaged by the randomness and disabling qualities of multiple sclerosis. But we can learn to thrive. We can learn to wake up, embrace the positive, create alternative plans, and live life to the fullest.

There have been plenty of days where my plan B ends up with me in bed. But not every time. I had several plan Bs scheduled and arranged nutrient need any of them this time. So #takethatMS!

Do what you can when you can. Life is short!

Wiped out. Nothing more to it.

Cement boots on and energy level that of a sloth on dope.

But let me tell you...it was Worth it.

A splurge of a day. Picked up by a friend at 5:15am we head to Malibu or the 'Bu as some folks call it. Unfortunately I slept like crap on Thursday, up every hour from 1-4am. Not sure why, and nothing I could do about it but get on with life.

Earlier this week I invested in a stripping basket, a new line for the wheel I won last spring, and some flies for the surf. Psyched to say the least. Only my second time surf fishing on the fly and the club was going as a group.

It wasn't until 9pm Thursday evening when I found there was a ride for me to the beach. Driving that distance isn't a choice with my Multiple Sclerosis. Excitedly my fishing gear was formed into a nice pile and placed by the door. Water bottles, porta urinal, diaper and other Tools for MS were packed as well. Fishing with four men, and my MS, this shall be interesting.

After an easy 30 minutes we were in front of the Pacific Ocean sipping coffee, stringing up the rods, deciding which fly to use. I went for the shrimpy looking thing but thought that the red checkerboard would be the slayer. The water was real clear. Beautifully still with small waves forming.

With waders and boots on, water bottle in tow, fly rod and stripping basket we head to the water. Within an hour two of my friends are hooked up with Corbina. One was tail hooked and fought for awhile before getting off. The other one was a beautiful fish and his first Corbina. I was psyched to take pictures and be there to watch him tactfully being in the fish.

In fact I may have been more into the photography than the fishing. Or at least enjoyed the photography as a break. In casting.

My casting isn't the best and being my second time in the surf, the 8wt, sinking line, was a lot for me to handle. I'm looking forward to taking a class in this type of casting. But I handled it. And I did not fall into the ocean and get drifted away.

Being not the best swimmer and with balance like a weeble, the fear of falling in was strong. I didn't go in above my chins. One time a bigger wave got me and I al,let took a tumble. Maybe a pfd would be good to wear for safety. One guy had one on and with my instability with MS, could be a safe option for me.

Have you seen the Martian? Or read the book? Or seen anyone in a spacesuit walki? That's me in my waders. And Waking around in the beautiful pacific coast sand in waders and boots for over two hours, well, that sand gets heavy.

I'm laughing because I'm obviously not using my stripping basket in this photo But I got used to it by the end of the day.

After two and half hours I was done. My legs will be burning once this adrenaline wears off. Tomorrow will be shot. This afternoon will be shot. But it was worth it!

With MS, fibro and other chronic illness our lives are limited. We must do what we want at time. Enjoy what God has given us. This is a beautiful world. Enjoy it. Love it. Respect it.

Ume plums, a beautiful discovery in my own backyard

Just a week or so ago I finally identified the beautiful fruit tree in our backyard. It's an ume plum tree. A Japanese plum that is more like an apricot. The fruits of these trees are a bit toxic when raw but are coveted for their alkalizing abilities once cured. They can be made into jam, drid into umeboshi or pickles, fermented and even made into Ume plum wine. Wow. I have a lot to discover.

The ume plum is small and greenish, turning yellow as they ripe. Some get a slight blush to them. Found several websites online to help me with the first project, making jam. Here is the recipe I followed.

First one needs to clean the little stems on the plums using a small paring knife or toothpick. These dont taste good. Then basically I soaked the plums over night with salt to detoxify them. Then I started a boil on the stove and soften them up a bit. After a quick drain I smashed the plums using the flat side of a chefs knife to remove the pit. Again, use this website to learn more.

I had about 4 pounds of plums and used about 3 cups sugar and fresh lemon juice. I could have used less as I enjoy some tartness. But this turned out good. I canned 3 and 1/2 pints and had another pint left for the refrigerator.

Treating myself to fresh ume jam, goat cheese and fresh jalepeno/asiago sourdough from the Rustic Loaf at our local farmers market.

Now this is obviously not the most alkalizing way to enjoy this coveted fruit. But it's a start! And Anything alkalizing is great for folks with MS or any inflammatory disease.
Now time to try to make some umeboshi.

Supposedly it clears up a hangover right away. Imagine what it could do for those with MS!

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Our Voice in Song with David Osmond

Why me? Why not me.

An interview with David Osmond

While multiple sclerosis may not be hereditary, a positive attitude could be in the genes. Diagnosed ten years ago with MS, David Osmond is not unfamiliar with the illness. He watched it take his dad, Alan Osmond, off the stage after a lifetime of performing. And then, after his own lifetime of performing, the illness struck him hard. The tripping and falling was bad enough. But then it took David’s music, his passion and livelihood. His fingers failed him as guitar strings sat quiet and his voice vanished.

At 26 years old, one of the famous Osmond family performers had no way to perform. Life as he knew it was over.

Multiple sclerosis (MS) is like a fingerprint; no two set of symptoms the same. Because of the way the MS was attacking, much differently than it had his father, it took awhile for David to be finally diagnosed. Then it came, relapsing MS. Really? What is this disease that strikes people so different, so random? David went into absolute denial. This was his father’s disease. It’s not genetic. Why me?

But then things started to change. After being stripped of his livelihood, there was nowhere else to turn but to his true self. To that deep down faith and those core values that are practically part of David’s DNA.

The Osmonds were born and raised to find the good in life. They were inspired to use talents for good and to thrive to be a good example. David remembers fondly his Grandma Osmond, a strong and positive influence.

“This too shall pass,” she would say, showing just how this family rolls. From the top down the Osmond family has had a push for the positive.

Not every family has a motto. Brought about by challenges, endurance, good times and bad, the Osmond Family has adopted “ETTE”. Or, “endure to the end”. This motto has been revised by David to say, “Endure to the end of the day,” because sometimes with MS it’s just enough to get through the next 24 hours.

Despite the struggles, David has been surrounded by positivity. Never once did he hear his dad, Alan, complain. Instead he was taught to look inward from the outside, to take a different perspective. To “recognize the disability in order to define [one’s] abilities”.

One prominent change in life happened when David took a new view on the old, “why me?” victim mentality. Instead of asking himself, “why me?” about the MS, he turned the question around and started asking, “why me?” for each of his blessings. He focused on the positive. And then, the negative just seem to fade away.

“Practice” is what Osmond attributes much of his success in staying positive. “Life is tough,” but get up, go forward and focus on the blessings. “Why me?” Yes, me. Why am I blessed with so much?”

Performing has also helped David cope with his illness. When one is always on stage and in the public eye, one quickly learns to wear a smile. All the time. Combine this with a positive upbringing and, well, when life gets tough, one learns and practices to “put a smile on and deal with it”.

David bought up a great point about what it means to wear a smile. That wearing a smile is a choice. It’s a person’s choice as to how they react to life. Life is tough. For everyone.

At this point David quotes a great philosopher, “Socrates thought that if all our misfortunes were laid in one common heap, whence every one must take an equal portion, most persons would be contented to take their own and depart”.

But being positive is not always easy. “It’s not the disease but the lack of hope that gets you down,” says Osmond. It takes practice, a lot of practice, to remain positive in life. Then adds, “Being sad and negative isn’t worth it. It’s just much easier to be happy.”

And then David reminded me of another great philosopher, Dr. Seuss, when he started to quote his poem, Did I Ever Tell You How Lucky You Are?

“When you think things are bad,

when you feel sour and blue,

when you start to get mad . . .

you should do what I do!”

With years of practice, surrounded by positivity, David Osmond told his MS to take a hike. Ten years into the disease David is back on the guitar, has three amazing children, and a loving wife. He not only has a voice to sing but also to advocate loudly for MS. Those feelings of denial grew into gratitude, thankful for everything the disease has brought to his life.

In appreciation of this gratitude, a new song was written and performed by David. If music is what feelings sound like then David nailed it with his song, 'I Can Do This'. He wrote it to inspire people with relapsing MS to do more than simply cope with the disease, but to live a better life with it.

As part of his efforts to advocate and help folks with MS, a new campaign was created to pay special attention to folks with relapsing MS. This campaign is called “Our Voice in Song,” and is located at ourvoiceinsong.com.

In addition to the song, there are many resources available on the website, Ourvoiceinsong.com. In addition to a full-length story of David’s fight with MS, there are tips and tricks, and a free music download of his song, “I can do this”.

While positive attitude may not be in our DNA it is transferred from birth through growth in everything we do and everyone in our lives. Every moment we have a chance to respond to life, we have a choice. Is it positive? If not, find a way to smile. Turn it around. Ask a friend, family member, support group. Ask someone to help you find your smile. It will be worth it.

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My Life with MS

Check out the article that David Lyons wrote about my life with MS. Thank you David! Together, all of us, we are going to #BeatMS

http://www.everydayhealth.com/columns/ms-fitness-challenge/surviving-or-thriving/

Caroline Craven, the Girl with MS

My story via @everydayhealth.

Not all great MS stories come from competitive athletes, bodybuilders and fitness contest winners. There are stories that inspire, motivate and encourage from those who suffer from MS and choose to fight the disease through health and fitness without looking at the prize attached to a contest.

Caroline Craven is an individual who takes control of MS through many different aspects of health and exercise inside and out of the gym. She blogs, tweets and social medias her way into the lives of many to lift them up and help them on their MS journeys. Caroline tells us about herself and her goals in today’s blog and inspires us all to stay active and enjoy our lives. Here is Caroline’s story in her own words:

MS Fitness: Are you simply surviving or are you thriving?

In 2001, while traveling throughout Guatemala with some friends, my vision and balance started waning. Fast. Approaching the airplane to return home to Los Angeles, the local vendors chattered about the “American on drugs” as I stumbled through the airport, palms splayed on walls. But I hadn’t taken any drugs, and I didn’t know what was wrong.

Continued....
This link should work now! Sorry about that.

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A New Year. Time to manage some stress!

Another new year and several intentions to follow for my multiple sclerosis. Fourteen years since my diagnosis yet I'll never forget how lost and scared I was stumbling to my doctors office looking for answers. Well, not the answer I wanted with an MS diagnosis, but better than being dead. So bring it on and let's do this.

Fourteen years later and I've learned so much. I've talked a lot about nutrition and other ways to manage ms. One area that does more for me than anything else is stress management.
How do we best manage stress?
A few of my tricks include:

Take a break and recharge the battery. Even if it's just five minutes in a quiet, dark place can help unwind and recharge. No lights no sounds. No electronics. Just me, relaxing and recharging. Five minutes can mean making the afternoon or not. Try it out and see what works for you.
Let go let God. We have enough static in our lives to charge an army. Now seriously, is what we are stressing about even within our control? Time to staple it shut, give it a name, and throw it away. Choose carefully what your energy is spent on because if it's used up on silly stuff we have no control over then where do we get the energy to deal with actual important stuff? Let go of it. Staple it shut. Throw it away.
Ask for help. My friends told me, after I got sick, that MS taught me how to ask for help. Finally. And that's a good thing. We are not in this alone. There's a huge community out there waiting to help us. From twitter @thegirlwithms and @mspals to MS nurses and support through programs like http://onetoonems.com there are a variety of ways to find support.

These are just a few tricks. Movement and attitude are other contributing factors. Often I participate in morning free flow and chat sessions to help me deal with my MS, life and all that goes in between.

In addition to flowing and chatting, it's imperative for me to stay on top of the stress management aspect of MS. This means every few days, checking in with myself and seeing how I am really doing. Am I sleeping? Am I eating healthy? Am I full of angst or able to sit, relaxed in a chair? No two of us are the same. But we all can have similar feelings of unrest. These feelings often are a result of stressors that haven't been dealt with in appropriate manner.
WORDS CAN HURT
Wow, and let's watch those words we are using in our daily lives. Are we setting ourselves for success? Or for failure? Are we saying "I get to work for the next hour" or "I have to work for the next hour"
Every word we use, even in the minutest of details, can set us up or start to destroy us. Words like Try, Have to, Need. Let's use words such as Do, Get to and Want.
"I don't have to work today. I get to work because God gave me another day on this earth that wasn't guaranteed" (what is guaranteed anyway?). "I get to work because my clients believe in me and hired me to do their work."

Whatever it is we are doing, let's use the words that put it in the right frame of mind. If we go in negative, we come out negativ. And that is not managing stress for MS. Positivity helps mange stress.
In addition, get moving. Can't emphasize this enough. Even a scooter ride around the block will help get the blood flowing and the air moving.
There is so much we can do to help manage stress.
What are some of your top stressors and how do you Manage them?
Join the conversation!

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Let's get moving!

Even from bed or a chair, we can get the body moving and flowing. I was able to stand for some of these as I've been working daily on balance and other MS related issues. Wanted to share and continue to receive inspiration from you, my friends. Please remember I am not an instructor. I practice a casual form of stretching based on yoga to help keep my MS at bay. Yoga has been my number 1 solution for this crazy disease, from emotional support to physical confidence. Don't know where I would be without it!
Whatever we do, we need to be safe, gentle and always thinking about our illness. This is what I do:

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Join me for an MS morning chat and some free flow movement!

Good Morning World!

MS morning chat and free flow sessions. - Join me! A casual chat about MS and what's going on and a couple of days of watching this girl with MS get moving. The videos got cut off a couple of times. That happens with me. But it's a start and gets us moving in the morning which is what these old MS bodies need.
Please note, I am not an instructor. My free flow yoga type routines are ways for me to wake up my body and get the blood flowing. Sometimes I just chat and swing my arms. Sometimes I fall into a nice yoga flow. Each day different, just like The effects of multiple sclerosis.
Here we go...

Sometimes the inspiration of seeing what I've done over the years, what I couldn't do, What I can do now, it all helps! Everyday is different. Take advantage of the good days!

Honestly I'm pretty wiped put today. I volunteered at the casting club yesterday to spread mulch for the wildflowers. Then helped the folks with a dinner party. Wanted to go to music in the park but family trumped friends yesterday. Next week I plan on going. It's such a fun event and one I can do!
Today it's about getting back to work after the weekend.

Let's do this!

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Taking Action on MS

Wow!

I'm feeling very grateful and fortunate to have spent the last year touring the country learning how people "Take action on MS".

As a certified life coach, I joined two other lifestyle experts, along with Madeline Stowe, and traveled the country to talk about living with multiple sclerosis. Madeleine does not have MS but her father did and as the daughter of someone with this oft debilitating disease brings an interesting perspective to the table.

Each lifestyle expert focused on a different area. My specialty is teaching tips and tricks to better manage stress with MS. The other two areas include physical exercise and emotional patterns with MS. All three areas are hugely important to learning to thrive with MS - or any chronic illness for that matter.

In fact the program had such success that five "webisodes" have been produces about living with MS. These webisodes are available at Takeactionms.com

It still amazes me how some of the simplest tools can make a positive difference in the lives of people with multiple sclerosis. There are many tools available in these webisodes along with touching personal stories with which many of us can relate.

It's easy to feel overwhelmed, even without MS. Even with my training and tools, I can fall victim of my own stress. It's easy to do and that's why it's so important that everyone work together to help those with MS.

Here are just a few tips to help:

1. Take 5 (literally, take a five minute time out and let the battery recharge)
2. Learn to say "No". Many folks with MS are type A overachievers. We have a condition. An illness. Be kind and gentle to yourself.
3. Start the day with positive words. Use them throughout the day. Avoid words that add stress such as "need" "must" "should". Instead use words such as "I get to" "I could". Start with one positive a day and watch this awareness help you grow into a healthier attitude.

There are so many more tips and tricks! Let's chat.

Caroline

What happens during a "relapse" and what caused it?

A relapse is basically new nerve damage to the brain or spinal cord area. A relapse may cause old symptoms to flare up or cause new symptoms to occur. It's quite random. A variety of activities can help cause a relapse.

My relapse nemesis is mismanagement of life. Imagine a diabetic who doesn't take his insulin when needed. Or doesn't eat properly. Or an alcoholic who doesn't work their own program. That is what living with MS is like. And I'm not as strong as I would like to be and I often overdo.

Because MS effects the nerves, many of life's daily activities can be more difficult during a relapse. Just some of the areas hit by MS:

Balance / Coordination
Weakness
Vision
Numbness / Tingling
Thought problems / Cognitive Thinking
Dizziness
Pain

Found this great summary of potential relapse outcomes at WebMD - Click Here.

But I don't agree with their slide on preventing relapses. They prioritize western medicine over lifestyle change, nutrition, etc. This girl with MS prefers to reverse this thinking. Place lifestyle first. Make all the natural changes we can toward a healthier lifestyle. Look at Chinese, Ayuervedic and other alternatives. Then go to Western medicine. Use a mix of medical styles to find a balance that works for you.

The goal is to find a lifestyle program that actually works on reducing flare-ups not just covering up the symptoms!