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!


Hot Air Balloons, Brain-First and an MS Mindshift

I worked with Celgene Corporation to create this post

OK guys - I’m heading to NY next week to ride in a hot air balloon in the New York City area.  And I’m a little freaked out.  

In my life prior to Multiple Sclerosis (MS), heights didn’t bother me at all, nor did traveling or walking all over a city like NY.  But life with MS is a different story.  

A former rock climber, adventure racer, I am now petrified of heights.  Or at least scared.  I feel as if I’m going to spontaneously combust and end up over the edge.  I don't trust my body any more after the MS.  It has failed me too many times.  

But this isn’t the time to fail.  This is time to thrive!  

Tim and Caroline fly fishing the Los Angeles River

Time for an MS Mind Shift 

A cross country flight, days of fun and sightseeing, and of course the balloon.  Time to get my brain in gear!

So, with your help, I’m going up in a hot air balloon on May 21 in New Jersey near Liberty State Park courtesy of Celgene and their continued support of those with MS.  

And, I need your help!

Did you know that by taking care of our brain we can help our MS?

I’ve lived with MS since 2001 and never really understood the difference between white and gray matter, and what lesions really mean to me.  Until now!  

I have never seen such aexplanation of the importance of brain health and MS.  

For example, “The brain is made up of two types of tissue: grey matter, which is where communication signals start, and white matter—which carries messages from one area to another. MS lesions occur in both of these areas and can lead to the symptoms you experience.”   

Well heck, that is a concept that can be understood.  

When your brain is healthy, the sky can be the limit

The MS MindShift website also recommends focusing on three areas:

1. What lifestyle choices can I make to help preserve my brain and its function? 
2. What can I do about other chronic conditions that may be influencing my MS?
3. What changes to my lifestyle can I make to help maintain my neurological reserve?  

They even have this handy list you can have emailed to you today or closer to the time of your next doctors appointment.  How cool is this?  

Dang...might need to steal this idea.  I’ve already downloaded and am using it to get ready for NYC!  

So far my list of action items include: 
• Meditation & quiet time
• Yoga
• Diet and Nutrition
• Sleep 
• Exercise
• Vitamin adherence
• Keeping up on tasks - making lists as needed.   

I am also reviewing my lifestyle.    

1). What bad habits have slipped in and need to be removed or tamed?    Some of these might include alcohol, tobacco, salt, processed foods, items that bring temporary joy but not many health benefits.  

2) What good habits have slipped away and need to be added and strengthened?  These help us to be strong, and once reintroduced can be easy to keep up:  walking, juicing, cleaner eating, more water, green tea, vitamin adherence.  

Does anyone else experience more fear since their MS?   And if so, what do you do to combat this fear?  

Thank you so much!  Together, we’ve got this. 

Send me your thoughts, ideas, encouragement.  I need them!       


Learning Leads to Advocacy - guest blog post

(Credit to MSFoundation who did the original print copy in their magazine MSFocus, winter 2019 issue) 

Learning Leads to Advocacy

By Laura Kolaczkowski
Hearing the words ‘you have multiple sclerosis’ makes us want to learn all we can, as fast as we can. When I encounter newly diagnosed people, the primary advice I like to share is to think of all the information about MS as a giant smorgasbord of food for thought. Just like those buffets we go to for real food, the selection of information can be tempting yet overwhelming. We want to consume it all, but it’s impossible to digest everything at once. Instead, we need to take small bits of information and process them before we return for more to build our knowledge of MS.

MS is a chronic, lifelong condition and the information we need to live better lives with this disease is going to be there as well. My advice is to take it slow and put on your plate only as much as you can digest before taking more. Bite-sized morsels of information won’t overwhelm you and can be quite satisfying.

Trying to understand test results, MRI reports, and all the other medical information we get from our clinicians can drive us crazy. If you have questions, ask your neurologist or MS nurse to explain those results. They went to school for decades studying MS, while most of us who have the disease didn’t do the same. I still struggle to understand the difference between B cells and T cells. Trust the experts to help us make sense of these results: that is part of their job. We also have to trust our own senses. If you feel like something is wrong, even when your test results show no change, speak up to your medical team. Don’t sit by wondering and worrying when you can be asking the experts.

This is your life and now MS is also part of it, but MS isn’t all you are. Be sure to keep balance in your life and spend time with family and friends, read a good book, indulge in a special food (my favorite is ice cream) or special drink occasionally. Treat yourself kindly – having MS isn’t something you did wrong and you aren’t responsible for being ill. Don’t beat yourself up – instead keep living your best life.

There is nothing more isolating than being alone with your own thoughts and a chronic disease like MS. As a person with MS, you have power. That power includes sharing your experiences with others in social media forums, running support groups in your own community for MS Focus, or joining patient-directed research groups such as iConquerMS. Find what ways you are comfortable in exerting your own power over MS and do it. Nothing feels better than connecting and letting MS know you are making a difference for yourself and others.

It’s important for everyone to know there are so many people on our side in this fight with MS. We begin with the million people with MS in the U.S. and even more worldwide, and then their support partners and families. Add to them clinicians (doctors, nurses, med assistants, etc.) and researchers and we have a mighty team. But we also need to remember the amazing work done by advocacy groups – such as MS Focus: The Multiple Sclerosis Foundation – and the resources they put into this fight. We may be the ones going toe-to-toe with MS, but when the going gets tough, we should not forget all these others who have our back.

Yes, I get angry when I read the profit reports from the MS pharmaceutical companies, and knowing what my insurance is charged for my disease-modifying therapies. But that anger is tempered more these days as I better understand the drug development and approval process; how many drugs never make it to the pharmacy yet are studied in trials for years; and what investments pharmaceutical companies put into treating MS, while financially supporting work to find a cure. The more advocacy work I do that involves the business side of MS, the greater appreciation I have for the need to educate everyone about the role of pharmaceutical companies as our allies and not view them exclusively as the enemy.

Never doubt we can all be advocates, we just do this work in different ways and some of us just get more public recognition than others. Advocacy and MS has many ways to play out. Each time we talk about MS to others, we are spreading awareness. Each time we connect with others living with MS, we are offering support. With every email, phone call, or tweet we direct to our elected officials about the need for healthcare for people with MS we are speaking up. All of these are critical advocacy roles and I am proud of all the advocates in my MS community.

Thank you Laura for this awesome post about making a difference and choosing to advocate for ourselves and others.  With everyone’s support, the sky is the limit!