Wednesday

Making Friends with My MS

I spend enough energy being angry at my MS. And what's the point? It just tires me out and uses what little energy I have. I am always looking for those times when I exert too much of my precious energy and see how I can do things differently to preserve this special commodity. To me this is the very tool that helps me manage my MS.

When I received my cool little bracelet from CJFreely yesterday as part of Nancy Davis' RacetoEraceMS program, well, I thought, this is just like a friendship bracelet. And bam, it hit me, time to truly make friends with my MS!

While I'm Not a hand model by any means, I love looking down at this little reminder that I can be friends with my MS. But how?

How do I do this? How do I make friends with a disease that ravishes my body on a daily basis and tries as it it may to dictate my life? This is a tough one.

First off, I'm making a list of things I'm grateful and thankful for:

  1. Learning to ask for help
  2. Learning to slow down and smell the roses
  3. Leaving the corporate world for the creative world
  4. Getting to know my parents as peers and friends by living with them
  5. Learning to ask for help. I could mention this one many times!
  6. Learning to live off a very, very small income.
  7. Learning to be poor with money, rich with life.
  8. Learning who my true friends are and will be.
  9. Learning what my limitations are and realizing they aren't that bad
  10. Meeting lots of cool new people and friends around the world with MS
  11. Knowing that my blog and info has helped at least one person deal better with this disease.
  12. Learning again what is important in life. Waking. Breathing. Living.
  13. Friends and family, couldn't do this without them.
  14. Limitations and boundaries. Learning how to make those more definite.
  15. Turning from a power player to a finesse player.
  16. Learning to listen to my body and respond accordingly

I know there's more but this is a good start this Thursday morning.

I think its good to also acknowledge what I don't like about MS in order to get the full picture. This will help me decide where I can improve in managing my MS.

  1. Unreliable. MS randomness makes it difficult to stick to plans.
  2. Each day is different. Pain, balance, cognitive, tremors, incontinence, vision, fatigue
  3. Inability to drive beyond local streets
  4. Panic attacks for no reason.
  5. Fatigue fatigue fatigue.
  6. Tired eyes, inability to read at times.
  7. Dry heaving, spasms makes it difficult to eat or have appetite.
  8. Muscle spasms at night make it difficult to sleep. Restless leg syndrome bums.
  9. Tremors tremors tremors. Hands and neck
  10. Clumsiness. Dropping things right and left.
  11. Loosing balance. Breaking toes.
  12. Folks not understanding the illness
  13. Randomness of it all
  14. Emotional rollercoaster
Things I've learned to say to myself:

#itisWhatitis

#takeThatMS

#NoTwotheSame

Things that help me befriend my illness:

  1. MS community on Twitter @thegirlwithms
  2. Family
  3. Friends
  4. Writing and the arts. The cathartic process.
  5. Becoming better friends with myself. This is a tough one. I'm not easy on myself and learning compassion for my illness and health is key.
  6. Finding a great neurologist to travel with on this journey. I still need one of these!
  7. Being open and honest about the disease. Building awareness and letting folks know that there are ways to manage MS beyond traditional western medicine.
  8. Research! There is so much new information about MS on social media and in books.
  9. Become my own health advocate. No one is going to do it for me!
  10. My Christian community at church.
  11. Learning that it's OK to take naps and be a couch potato at times. (This is a tough one for me!)

Bottom line, in spite of MS:

I'm living a different life then expected yet a beautiful life with many opportunities and options.

Keep all doors open with this disease. You may have always defined yourself as a "strong corporate, get things done type VP" and then bam, the rug is ripped out from under you.

Time to redefine ourselves. That's what I did. Imagined and visualized all the things I loved in life since childhood. Which of things can I do? What have I always wanted to do and what is still possible?

Fortunately I hade a very full life prior to MS: successful career, horse trainer, river guide, adventure athlete, runner, mt biker, ww kayaker, rock climber and even jumped out of planes.

But that surely doesn't mean I'm done living!

I'm finding out what I can do and what I can't. I think this is a continual thought process with this disease. And while some days I can do some things there are days I can't even get out of bed.

Take advantage of every second and every minute! Even if we are bed ridden, cane assisted, or walking three miles, every part of your life can change with MS.

Get ready to go with the flow and let's do this!

Time to become friends with our MS!

 

 

 

Sunday

Take action MS in Orlando!

Dark from night and lack of street lights the big black SUV waits to pick up its target. Me. Girlwithms. Going out in style and heading to Orlando for an amazing http://takeactionms.com event with fellow life experts and the amazing Madeleine Stowe, spokesperson for Aubagio, an MS once a day oral treatment. Madeleine doesn't have MS but her father did. She shares her experiences living with a parent with MS.

LAX is always a fishbowl within which to watch folks. And that's what I did for over an hour before my flight. Mindless, flying. If you've got a driver and watch and no stressors.

A group of 80 employees from a tech company descended on lax. And they did not look Like techies at all! High, high heels, and all dressed up in black or nude. Spray tans, straight or curled hair, everything looking coifed and perfect. Their voices were a bit like cackling hens but they were having fun. 20 year olds in career mode. I remember those days. So long ago it seems from those corporate days to this life of illness and making every day count.

Sitting at Hilton, having a beer. Tomorrow is our event and I'm on from 9:30 to 2. Then fly fishing Sunday. There's so much to do here and I feel pretty stupid leaving after a day but alas, work to be done at home and more.

So, what's with the MS? It's been mellowing lately, due to stress management and more. Honestly my nutritional intake has been crap. I have nothing to credit my recent success except for stress management. It's been the true key to my recent good feelings.

Well, time to manage some stress!

Off to meditate and to breathe deep. Breathe deep my friend, breathe deep.

Check us out at http://takeactionms.com

Let's do this!

And here we are! At the Hilton Orlando helping hundreds of folks with MS learn tips and tricks to managing stress with MS. This information would have been extremely helpful when I was diagnosed 13 years ago. These events are quite the uplift and inspiration for me, meeting so many folks who understand what I am going through. The dynamics of which are still beating strong the day after.

Connecting with folks who have MS is inspiring. Learning ways to manage MS is inspiring. As Madeleine Stowe says during her presentation, so much has changed over the years. The medicine. The knowledge. It's a different world.

And one day, we will find a cure!

 

Thursday

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. Using my essential oils to cleanse and purify my living space and me!

Let's do this!

 

Saturday

New Intentions, the power of the Moon and right Choices

Found this post from summer and it seems necessary for me today. Not sure what's going on but Im in a funk!

A few weeks ago a full moon graced our skies. I could feel the energy building. The strength was overwhelming. Frightening. Oh how I've loved to howl at the moon the past. To sit on the barn roof and fall into its power. But it's also a time where I can over do. Over indulge in food, coffee, wine, anything not necessarily good for me in quantity. Add a women's hormones into the mix and well, sometimes it's best to heed the warnings.

Photo and More about moons from PlanetforKids

Choices. That's what we have. Choices. During this full moon in the middle of June, I stole away to a friends house and chose to live a cleansing retreat for five days. From herbal teas to lots of water, healthy food, yoga and meditation, it was empowering: Feeling the energy of the moon and restoring the energy of the body mind and soul.

As my mind cleared I began thinking of new intentions. For me. For life. Not just goals, but actual intentions. Then ways to get there.

New intentions:

  • To live wholly and honestly.
  • To live and love with an open heart
  • To care for my world

How to get there:


  • Faith. Family. Friends.
  • To be one with Christ.
  • To balance work and play
  • To optimize health
  • To be a productive member in my community
  • To grow residual income for my future
  • To continue growth as local business woman.
  • To continue to help others grow in life
  • To grow in meditation, yoga and body mind soul.
  • To love with an open heart
  • To live with an open heart
  • To care for demons and anxiety with love and an open heart

While this list can and will continue to grow, for now I feel content. Content to be present. Content with where I've come from. And content with where I am going.

I could have chosen a different direction during the full moon. One of destruction and discouragement. But I didn't. I made the right choices, lived with my multiple sclerosis and optimized my life.

This past Friday, June 27, was a new moon. A time to focus on these new intentions and to let go of old ones. Let go of spiderwebs in your attic. Let go of all that is unnecessary and set forth a path of positive choices for the coming month.

During the next two weeks the moon will gain in power as it reaches its full size. As it builds so will I. Continuing to find my new self within my illness. Continuing to make new intentions with which to grow my life. Continuing....

What are your new intentions for this month?

Join me in conversation. Let's do this!

 

 

 

 

 

Tuesday

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:

  1. 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.
  2. 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.
  3. 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!

 

 

 

 

Friday

Living life to the Fullest with MS

There are days we are stuck in bed. Or a wheelchair or scooter or a cane. Some days we walk, run, bike and play. Sometimes gravity gets the better of us. Life with MS is not fun. But if we make it fun, then we can say #TakeThatMS!

Attitude is everything. Positive thought can make the difference. As well as learning how to chillax and accept that we have an illness and must take care of our lives as such.

  • Positive attitude. Can't say enough about this.
  • Awareness: meditation and mindfulness
  • Movement: yoga, exercise, tai chi, qigong etc
  • Nutrition: reduce inflammation and other symptoms through food
  • Essential oils: helps reduce pain and other symptoms
  • Social media: support groups, friends and family around the world who all understand what we are going through!
  • Peeing in ones pants: it's going to happen so just accept it now and move on.
  • Fatigue: oh dear. I just woke up and now it's bedtime again. How am I to to get through this day?
  • Depression, anxiety: talk to your DR. Use support groups, friends and family
  • Wine: may not be the best for MS physically but mentally can sure help the attitude
  • Learning to relax: it is OK to hold a couch in place with ones body
  • Boundaries: set them. Follow them. Your health comes first!
  • Ask for help: so many of us are Type A. Time to step back a notch.
  • Learn to say No: stressors come in all shapes and sizes. Priorities based on your health and well being are best.
  • Appreciate the little things in life. Stop and smell the roses.
  • Have fun! Pick up new hobbies. Look at life all over again with fresh eyes. Don't wallow in the past.

Here I am fishing once again. Fly fishing is very good on the nerves and when it includes friends, a twenty minute drive and funky Los Angeles surrounds, well, it all makes for a rocking good time! Now granted, I overdid a bit this past week and am feeling it today. It's Saturday and as I planned it, a pretty mellow day.

I'm feeling like the Giant American invasion on my little Philippine friends!

Last night I had a friends party and then a two hour Aromatherapy Yin Yoga workshop at my favorite little yoga studio in Montrose: TheraYogaStudio

Today: a relaxing Saturday with Wall Street Journal, DoTerra essential oils diffusing, and plenty of lemon-water throughout the day to cleanse this body!

How are you living life to the fullest with MS?

It's all a balancing act. Do more and pay the price. Treat your body right, get a refund on energy.

Right now, I'm treating the body right and restoring and rejuvenating for the week!

 

 

 

 

 

Multiple Sclerosis in the News

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