Rocking New York City with Multiple Sclerosis!

I just made my first visit to New York City since 9/11.

Emotional, exhausting and empowering.  

The multiple sclerosis was managed but it took hard work and plenty of preparation.

Final result:  Live TV shows promoting brain-health and MS awareness.


Traveling with MS can be a nightmare, even with the best intentions. 



It’s best to have a well thought out plan “A”, knowing the whole time that most likely plan B, C or D might come into play.

We started off the trip with some MS advocacy work... my favorite!   Celgene is introducing their new #MSmindshift initiative and I love it.  Spot on. It’s all about brain-first thinking.  MS affects the whole body but the damage is done in the brain and spinal cord.  For now, I’m focusing on the brain.

My friend and fellow MS advocate, Cathy Chester (@CathyChes) was there along with her husband, Gary.  Total blast.  Laughter, fun, sillliness and seriousness filled our time.



 Click Here for more information about MS MindShift and Brain First thinking.


Plan B it is 

The plan was to spend the day in a hot air balloon.  But, just as with MS, life is unpredictable.  Especially the wind.  So, Plan B it is.

And let’s just say that Plan B can often be total baller.  Best not to have expectations for any of the plans because something really cool may just show up.

Today it was a private yacht trip to the Statue of Liberty.  No one else on the water and the weather, while breezy, was gorgeous.

The next day was packed with a satellite media tour in the morning and then...ahhh...back to bed!

First morning was a 3AM wake up call.  The next was 5AM and the next 4AM.  After traveling cross country. Thankfully, we were on Alaska Air, which knows how to take care of their customers, especially those with MS.

The media tour was fun.  I absolutely loved it - sharing my story to help others.  I could do this all day long... well, maybe at least for a few hours.  Here is my very first ever live TV interview chatting up about MS Mindshift, “brain-first” thinking and what its like to live with MS.


Click HERE for live TV interview with Caroline Craven, the GirlwithMS

I love what I do, and can do it because of my friends, support and especially because of Tim.  He is attentive, caring and takes care of me better than I do.  We all have our strengths.  My forte is not taking care of myself.  I have had to learn, train, practic and form healthy habits in many ways.  Like, slowing down and taking breaks.  Tim can see when my MS is acting up and will interfere so I don’t over do. He attentiveness is helping me stay focused on whats best for my MS.


Couldn’t do this without you, honey!


The tour of 9/11 brought about emotions not felt in over a decade.  My MS was really bad when 9/11 occurred and the images from the original film footage came up like a splinter and stung hard.  Vulnerable, raw, emotional, I was a mess.  Snapping at Tim for no reason, except for feeling like a veal chop pounded wafer thin, ready for the broiler.




Then we toured the Empire State Building with Rubio, An informative, enthusiastic and passionate guide.  AWESOME tour!







And,  HERE are my tips for traveling with MS:

1.  Plan your trip.  We studied the map and made general ideas of what we wanted to see.  As the trip got closer certain reservations for tightened up.  But within each day were hour long blocks of nothingness.  Spots for rest, rejuvenation and restoration.  

2.  Prepare:  I spent a week in Lake Arrowhead prior to NYC.  This meant quiet time, me time and time to get my work done.  No one else’s agenda mattered except mine. This is not easy to do but it worked out well for this trip. 

I have a tendency to lose weight while traveling. This was never the case prior to MS. But now I need to calorie load beforehand.  Especially for a trip like NYC which had long days and plenty of walking.  

3.  Wardrobe:  Check out the weather and layout your wardrobe.  With MS, especially in the warmer months, it’s important to dress in easy layers that can be shed as necessary.  Even more important if you are a middle-aged woman.  Organize outfits for each day and make notes of them. This can be so helpful when the MS blahs rear their ugly head during a trip.  

4.  Nutrition:  Anti-inflammatory foods help me the most while traveling.  Green tea, lots of water, lean proteins, cheese becasue I’m a cheesehead. And watch the dangers:  too much salt, processed foods, quick fixes like caffeine and alcohol.

5.  Check out my blog post about brain-restoration; Click HERE to learn a bout brain restoration, sleeping and MS

6.  Most importantly - have fun and smile!

Even if youre tired as heck, try to find that smile deep within and share it with others.  It’s contagious and viral in all the good ways.

We had the opportunity to see. Oklahoma! On Broadway thanks to Jamie DuMont and Rick Miramontez.  What a show.  I am still smiling and dancing inside.  Just what we needed to wrap up an amazing week in New York City.



We also got to meet up with my big brother, Bruce Craven, at Marea’s Restaurant. Bruce recently published his latest book, “Win or Die, Leadership Secrets from Game of Thrones.”   I highly recommend it!



Remember guys - we’ve got this!


#takeTHATms!  



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Emotional Hangover from MS - and what to do.

The MS got a hold of me, worse than it’s been in months.   But there were reasons.  Pushed beyond comfort by demands of life, it caught up with me.  And caught up bad.   

Often we talk about the physical pain of MS, the tremors, the spasticity.  The pain the comes from every nerve ending or the fatigue that covers us in a lead blanket.

And then the pain wanes and we feel better for a bit.  But the emotional sludge that remains behind is detrimental to our health and happiness.  

And boy did I feel it this morning when the day got started.  Frustrated, irritated and angry at life, my legs crumbled their way out of bed to get some coffee.  Crumbled for sure as there was no jumping for joy today.  



Why my?  Why this damn MS that suffocates me and keeps me jailed up in my body?  

Sure, I aim for happiness.  Positive thinking and all is great an my focus.  But today, I’m not going to fight it.  My emotions are way over the top upset and there’s no denying that I really I despise my MS right now.  

Unfortunately the angrier I get the more worked up my MS becomes.  This isn’t productive or healthy for anyone.  
Time to force a change! 

Yes, I’m using the word force.  Enter something beautiful in life:  A sit in the garden.  A chat with a friend.  A stroll through the neighborhood.  Find the beauty, grace and appreciation that is the bases of life.  It’s there but when I’m this worked up it’s hard to see beyond the tears. 


But forcing this is easier than it may seem.   Just sitting out in the garden for a few minutes is helping.  

BREATHE DEEP EXERCISE
1.  Breathe in deep to the chest.  
2.  Take the breath deeper, into the belly and gut and let it distend out as far as possible
3.  Keep taking in more air, aware of the beauty around you. 
4.  When full of air, sit a second then exhale deep.
5.  Exhale through the mouth, letting out everything dirty, angry and evil. 

Repeat! 

Ahhhhh...  Feeling so much better already.  

Now, to remember this trick during the busyness of the day.  


Now that I can see straight and am calming down, time to record my issues.

Even after almost 20 years of this illness, I am still learning about it.  Today was a lesson learned.  AFter three days of physical hell, the emotional hangover was even worse.   Next time my body faces exacerabations from mismanagement I must remember this tailing wind of emotions that have entwined me.


Win or Die: Leadership Secrets from Game of Thrones
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