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

Potential MS progression

Around 400,000 people are living with MS in the US.¹ Of these, 80% of patients living with relapsing remitting MS (RRMS) have the potential to progress to secondary progressive multiple sclerosis (SPMS).²

The uncertainty of progression may lead to anxiousness about the future. We can choose to ignore this uncertainty or we can choose to help manage our future by taking preventative measures. MS progression can show up in many different ways. It’s important to look out for any new or worsening symptoms, no matter if they are big or small.

There are 8 functional areas to keep an eye on, including:

• Assistance required to walk
• Weakness or problems moving limbs
• Problems with coordination
• Bowel and bladder issues
• Trouble with memory or concentration
• Vision problems
• Difficulty with speech or swallowing
• Numbness or loss of sensation

But whether you have RRMS or have progressed, disease management plays a role in maintaining quality of life. Living with MS is a constant battle of disease management, awareness and gratitude. But most important is the communication between the person living with MS and their family, friends and doctors. All of these people provide essential feedback about our illness and can help us when we need it most.

Here is what we can do today:

From day one my neurologists taught me to treat the disease, treat the symptoms, and I will live my best life. She was correct. I couldn’t walk or see unassisted when I was diagnosed. I looked really drunk and it took years to slowly re-find my body and myself. Everyday can be a struggle with MS.

It’s time to slow down, relax, chill, and take a load off. Literally, release yourself from the pressures of having MS.

These are some tips that help me get through this life:

Attitude.

We can carry a chip on our shoulders. We can be angry. We can be resentful. But we can also learn to be grateful. We can learn to be positive and to help keep our MS on the best track possible.

We can make an effort and hopefully make a difference.

We’re not talking rose-colored glasses. But be honest and look for the positive. Smile at your MS and smile at yourself. You deserve it!

@NASA enjoying @JPL’s Lucky Peanuts!

Keep track of your symptoms.

Find an easy and sustainable way to track your questions, symptoms and thoughts. Use a journal, MS app or notes on your phone and create a simple list to share with your doctor. Review this list with your friends and loved ones, see if there is anything you are missing or not remembering.

Even if the symptoms seem commonplace to you, include them on your list to your doctor, especially if they are new or getting worse over time. Every little thing so they truly know what is going on in your body and brain.

Talk to your doctor.

Ask questions and share your daily life experiences.

Topics to consider:

• How is your MS on a daily basis?
• Which symptoms are most problematic? Least?
• Over the last 6 months, have you noticed new or worsening symptoms in the 8 key areas mentioned above?
• How does the MS impact living your best life? Are you not doing something in life that you want to, and if so, why? Are you able to bounce back after relapses like you have in the past or do symptoms linger for longer?
• Review MRI and other test results with your doctor.

Discuss symptoms and any changes in your disease. MS can wreak havoc on the body. It’s the day-to-day crud from the symptoms that can cause a decrease in quality of life.

Family and friends.

If you live with family or spend a lot of time with someone they may begin to notice your bad days versus the good ones. They may even comment and suggest slowing down or something else that might help. Often we want to snap back and say, “I’ve got this!” but in reality, they are right. We often need to slow down and heed our symptoms.

So many people with MS are go-getters. We like to see things done! But that also means we often thrive on burning the candle at both ends. And this is just not good for the MS.

Listen to your friends and family. Ask them questions and listen to what they say. “How do I seem to you - regarding my energy and MS symptoms?” This awareness helps build better understanding of MS for both patients and loved ones and may help detect potential signs of progression.

What I learned from friends, family and doctor.

My friend, Rora, noticed how my MS was worse during allergy season. My dad taught me the importance of not sweating the little things because, “It is what it is.” My mom helps me find ways to be more independent, encouraging my self-esteem at times when it’s low.

My love, Tim, reminds me about slowing down, saying no, taking care of myself and setting boundaries. My longtime friend, Susan, noticed that I have learned to ask for help. And Barby, who has been my cheerleader for the last thirty years, encourages me to strive with the perseverance and tenacity needed.

Caroline and long-time friend, Barby

My doctor reminds me that we need to care for ourselves no matter how visible the symptoms. There is an importance of mind over matter and staying positive but not foregoing important tests such as the MRI. And keep up with doctor visits.

Live life as best as possible.

What we do today affects how we live in the future, no matter the illness. With MS we know certain things can help prevent some progression:

• If you smoke, find a way to stop.
• Eat a heart-healthy diet.
• Watch vitamin D levels and discuss with doctor.
• Find a fun and safe way to exercise and enjoy the outdoor sunshine.

The one thing I have to remind myself all the time is that no one has extra special powers, especially our loved ones and doctors. Bring notes, be honest and work together to track your disease and potential progression, and live the life you want with your MS.

References

¹Multiple Sclerosis Association of America. Frequently Asked Questions. https://mymsaa.org/ms-information/faqs/. Accessed September 10, 2019.

²Multiple Sclerosis International Federation. Atlas of MS 2013. http://www.msif.org/wp-content/uploads/2014/09/Atlas-of-MS.pdf.Accessed July 22, 2019.

Novartis Pharmaceuticals Corporation

The Rocky Ride of MS and What Helped

Multiple Sclerosis is like riding a roller coaster in so many ways.

This past year has shown a lot of love for this Girl with MS. Some symptoms subdued, others raised their voices. But top on my list was meeting so many wonderful people living with MS across the country, in person and around the world via the internet and telephone.

Despite my good year and pleasant holiday, the MS reared its ugly head with a bad case of pseudo bulbar affect or PBA. One minute laughing, the next in tears. I just call it the funk. And it got a holt of me bad the other day.

The fact it's the end of the year caused a bit of the emotions. Focussing on what did not get done in 2019 led me down a path of quick depression. Even healthy people have to give themselves a break, but the pressure and disappointment that one can put on themselves can be debilitating. And that's where I found myself.

You know what helped? Knowing my new neurologist and his nurse were just a phone call away. And second, reaching out to all of you, reading your stories and reminding myself that we can get through this disease. We have each other, and that, my friends means the world to me.

Here are just a few of the great folks. They all do amazing work/writing/advocating. Click on their names to visit their blogs/websites. This list will be growing!

Cathy Chester - an Empowered Spirit

with Cathy Chester

Dave Bexfield - ActiveMSrs

with Dave Bexfield

This Group! Amazing folks

Laura Kolaczkowski - iConquerMS

Jon Strum - RealTalkMS

Lydia Emily - Street artist and bad ass

with Lydia Emily

with Ashley Ringstaff and Nicole Lemmer

Nicole Lemmer - My New Normals

with Carolyn Kaufmann

Carolyn Kaufmann - Without the Weight

with Dr. Barry Singer

Dr. Barry Singer - MS Living Well

with Cheryl Hill - marathon runner

Kathy Reagan Young - FUMSnow.org

Each and everyone of these people are deeply involved with MS. Most of us living with it. Such inspiration from all of you. Thank you and here's to a happy, healthy new year. May 2020 find you with peace and love and minimal MS junk.

I know there are many folks missing off this list. It's a work in progress. Been making some Hoppin' John and it's ready for chow time. I'm ready and dang, I'm hungry!

#takeTHATms!

Holidays, MS and Surviving the MS Dictatorship

How did it get to be December? November flew by as usual. As did the rest of the Fall. One of my favorite times of year, the Fall. But then I pretty much love every time of year.

Joshua Tree, CA by Caroline Craven

The holidays can be tricky with MS. The emotional roller coaster, the disease itself, the losses that result. MS is not for sissies. Throw in the holidays and one could have TNT on their hands.
It's easy to get wrapped up in the festivities, duties or even the burdens of the holidays: you're feeling good, things are rolling along and you're getting it done!
Until one day you wake up and, well, start freaking out. "How am I going to get it all done?" The money, the chores, the obligations. It can all be so everwhelming. And throw in an unreliable and random disease like MS and the simplest thing such as getting out of bed can be impossible.
MS is often called the invisible disease. Folks think you look great so you must be and feel great. Nothing could be further from the truth.
I had a lovely Thanksgiving this year but my MS threw me for a couple of loops. The emotional roller coaster seemed unending. Up one morning, down the next. And I mean really down. I don't like feeling that down. Weakness and pain wrecked havoc on my body as well. Hit with a 24 hour bug, the flu like symptoms lasted days and sucked the life out of me. Energy gone, balance gone, I envied the elderly man leaning on his wheeled walker while I held up the wall of the church with my back.
"How am I going to get back to the car?" Weak from the flu, weak from MS, my legs were trembling. I had no cane. No walker. No friend to hold onto. Stealing the last bits of energy, I rallied forth and made it to the car to wait for the family to drive us home. All the time thinking, how am I going to get everything done for holidays when I can barely walk a block to the car?
Oh how I despise this part of the disease: being forced to slow down despite what you may want to do. No one likes to be dictated. MS is a disease that will teach you to live under a dictatorship. But like any life we live by our choices...so what is it going to be?
Here's my game plan for surviving this years MS dictatorship:

Listen to my body
Listen to my MS
Make Priotities
Set limits and boundaries
Be flexible with expectations
Be compassionate and easy on Me

Doesn't look like much but it is. It all seems so simple. So logical. But yet, so easy to overlook when actually living our lives.

Today I'm taking charge of my own MS dictatorship for the next month. One day at a time.
The holidays will arrive whether I'm well or sick, so time to do this right and get on with life. Time to manage my MS like an iPhone battery: to conserve and preserve energy to maintain quality of life with MS.
Off to get the day started and take my own advice!
Let's do this!

I posted this originally a few years ago, but it rings true every year, except for the flu. Whew! No flu this year!

Posted with Blogsy

Finally, a New Neurologist... And I am Psyched!

“Caroline,” he called. “Caroline”

He looked like the photo on his website.

Wow, the doctor is calling me in for my exam.

“I’m impressed by your service,” I said.

“We do things differently,” Dr. Shubin replied.

And, boy do they!

Upon entering the office I could see plenty of MS information. I even found myself on their table!

PBA - an effect from MS & emotional rollercoaster

It all started with a frustrating doctor visit a couple of months ago. My neurologist and I did not communicate well. Feeling intimidated and second-guessed, I started doubting her expertise. Not a good place to be. Years are gathering and I am getting older. Fears of what might happen with my MS are rising. I was scared.

But, not now.

Just one doctor visit gave me so much confidence. He said there is a place I can go, Casa Colina, that is famous for rehab. They even have driving machines to help you learn to drive again. Could you imagine? Being able to just hop on the freeway and go where ever you wanted with out paying for a ride share? Or bothering friends or family? Imagine the freedom and independence. I’m tearing up just thinking about it.

Dr. Shubin covered so much and gave a thorough exam. Despite the years of neurology appointments it’s been way too long since one has given me a proper exam. Not since my diagnosing neuro retired.

We talked about life, how MS is working, he made it so easy. I am still in awe over the experience. I have had doctors tell me they don’t know what’s wrong because I don’t’ “present”.

We talked about disease modifying treatments and opened the conversation for later discussed.

Wow.

About to meet my new Neurologist!

Just feeling the love from his office. It was the best experience since I was diagnosed. The love and care is amazing. The expertise and knowledge is utmost. This is quality and I’m feeling even more ready to conquer MS.

Join me in my battle. Let’s conquer MS together!

#takeTHATms!

Talking High-Dose Biotin with Dr. Aaron Boster

I saw this great tweet by Dr. Aaron Boster the other day and I couldn’t stop laughing.

Yes, this is what high-dose biotin can do. What’s even better is what it can do for MS, at least for mine.

My annual physical was coming up.

I had one instruction: Go off my high-dose biotin for a few days before blood work was done. Last year my thyroid test showed a false result.

Research has shown that high-dose biotin may provide a false positive result for the thyroid and it is suggested to go off the supplement for a few days to a week prior to the test.

Many of you know that Myetin, a high-dose biotin with NAD+, has been part of my regime for about a year and a half now. After taking it, I found that my energy increased and my pain and spasticity reduced. It also seems to help keep my cog-fog at bay. These are three things necessary for me to function at my best.

Not as much hair as Dr. Boster, but it’s getting there!

But the fact was, I was scared to go off of my Myetin. Everything has been working really well these last couple of years with regards to managing my MS symptoms. I did not want to change a thing!

What if I relapse?

I was freaking out. And I was traveling across country for a bunch of MS advocacy work. I could not afford a relapse. I couldn’t even afford to not be on my best game possible. Due to some weird regulation I am not allowed to talk to my doctor outside of appointments and relaying messages via a nurse did not instill confidence in me.

So, stubbornly, I did not wash out the drug before my blood work.

Interestingly the results showed normal thyroid activity this time.

Enjoying life when I can.

My interest was piqued.

I spoke with the folks at Avior Nutritionals (maker of Myetin) and was informed that taking the supplement does not guarantee a false thyroid test but it can happen.

Unfortunately my lack of conversations with my neurologist did not lead to confidence on my end. So, I went to a leading expert on MS, the much-loved Aaron Boster, MD from Ohio.

Dr. Boster is not familiar with Myetin, but as a practicing MS specialist is quite aware of the potential benefits of high-dose biotin.

Boster, who has worked with thousands of MS patients in Ohio, has over 16,000 subscribers to his YouTube channel, and is quite active on social media. His regular videos on MS are insightful and smart creating a great resource for those newly diagnosed and those living with MS for years.

Click here for Dr. Aaron Boster’s YouTube Channel.

High-dose biotin is showing promise

“The preliminary research is so compelling that I will routinely recommend high-dose biotin,” Dr. Boster said.

Benefits are showing potential in slowing disability in those with progressive MS, as well as slowing brain volume loss. It may also have “re-myelinating potential. “These are very important things to do,” said Boster. He further explained that high-dose biotin is a very safe compound to take and has not shown any risks to date.

“There have been some large, properly designed clinical trials designed to answer the questions of the benefit and risks. But the jury is still out,” explains Boster, “the research needs to be replicated.”

Clinical trial results pending

A multi-campus clinical trial involving 642 people with MS is looking at the efficacy of MD1003, a form of high-dose biotin, in disability of those with progressive MS, especially gait issues. This double-blind study includes 92 facilities and recently wrapped up data-collection. Results will take time to process but I’ll share them when available.

When I told Dr. Boster about my failure to comply, he expressed his concern. (Which is just what I needed!) He explained that thyroid tests use biotin in their assays, and by not washing out my system, I may not get honest results.

We talked about the emotions of changing routines, fear of relapses and then focused on ways to gain confidence. The partnership between patients and doctor is vital in this confidence. I am grateful to Dr. Boster to be able to have this conversation.

“I don't recommend high-dose biotin for everyone,” said Boster, “but if a patient is interested in preserving the brain reserve, managing brain-volume and slowing progression then it’s a conversation to be had.”

Not always easy, but I keep at it.

Doctor Patient Partnership

This experience reminds me of the importance of a good working relationship between doctor and patient, a true partnership. I obviously did not have one and have since found a new doctor. I have not seen him yet but the MRI is scheduled and so is the neurology appointment. I’m psyched.

Thank you, Dr. Aaron Boster, for helping me better understand the potential for high-dose biotin. And the importance of having confidence in managing my MS with my neurologist.

Thank you, Avior Nutritionals, for sponsoring this post and for supporting the work of those living with MS.

Click Here for more information about Myetin (affiliate link)

#takeTHATms!

Moving Forward with MS

I am blessed to share my MS story. Please note this post represents my own opinions.

When MS first hit me, it hit hard and fast. I couldn’t walk or see unassisted.

Today, I am thriving.

These last twenty years have been quite a journey, containing frustrations as well as accomplishments.

Flare-ups still occur and managing my MS is a full time job. But, I have found some tips and tricks that can help everyone.

New MS Guide

AND, the National Multiple Sclerosis Society just released a comprehensive guide, “Now What? Resources to Keep You Moving Forward with MS,” which is amazing. I sure wish it was around sooner! But it’s here now and boy does it have some great tips. No matter how long one has this illness, there is always something new to learn. Growing and learning are all part of the moving forward process.

Creative Outlet

One suggestion the Society talks about is finding a creative outlet, such as painting, photography or writing. This is so cool, because this is the path my life took without consciously knowing about.

My career as a business executive ended when I got sick. Time to re-invent myself. During this time I picked up a camera and started playing around.

Interestingly, this action made a HUGE difference with my MS. The focus and attention required for the photography helped me forget about the MS. The hand-eye coordination helped my brain and chasing wildlife made me smile. Win-win in all areas.

My adventures led me to Africa and the Galápagos Islands, among other places.

These are some of my favorite photographs. They are all a result of patience. Waiting, being still and quiet, breathing deep, finger on the trigger ready to squeeze.

I swear, this saved me in so many ways!

In Ecuador atop Colorado

Galápagos Islands: Patience for the Petrol

Maasai in Tanzania: three planes and one relapse later...

Tanzania: Fearing for their safety, the herd finally settled down just long enough to grab this shot.

If you would like to see more of my photographs please visit this link.

Moving Forward

In order to keep thriving it’s important to keep moving forward. I still love photography but now I want to try something new. I’ve dabbled in drawing and painting so decided to try one those nice paint by number kits that are growing in popularity.

In fact, I am using this photograph of one of Darwin’s finches in the Galápagos Islands. I am so excited. I’ll keep you posted on the progress!

Galápagos Islands: Female Cactus Finch

Thank you all for being such a wonderful support for me. I’m excited to hear what you think about the new MS guide from the Society. I’m finding it quite helpful!

Click HERE to download MS guide.

#ThisisMS

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.

Click HERE to see how I prepared

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!

Click HERE to see how I prepared for NYC

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!

CLICK HERE FOR MS on the NEWS!

Game of Thrones for MS

Well, it’s a wrap!

Our Game of Thrones party is in the books.

My brother, Bruce Craven, recently wrote the book, Win or Die: Leadership Skills from Game of Thrones.

Bruce is a professor at Columbia University as well as director of their executive education programs. Before graduating from Columbia with his MFA, he was a banana slug playing frisbee at UC Santa Cruz studying literature and political science.

He is in amazing big brother. Always there for his family and friends. One true gem of a man.

Containing many valuable tools, his book provides insight on the priorities people place on their values in chapter 2. This chapter resonated with me to the point that a change needed to be made.

Time to adapt!

As I try to balance my MS with my life, I find that the need to set boundaries becomes increasingly important to my health. But setting boundaries are not as easy as one might think. There are other people, emotions and feelings to consider.

When reading about values and priorities in Win or Die, it struck a chord.

While many of us may have the same values: ethics, honor, family, life, honesty, etc., we may value them differently causing discord in communications and expectations.

So my mind started wandering and created a priority of values that drive me.

My values and priorities:

1. Treat everyone as you would want to be treated. Smile at everyone. Make eye contact. Show respect.

2. Be resourceful and watch waste. Food is designed to be eaten, composted or shared with others. All of it. Respect the plastic - respect it man! Soil, water, sunshine. It’s all a blessing not to be taken for granted.

3. Take care of yourself. Eat well, exercise, enjoy the outside, smile at yourself and others. Own your health and own your excuses.

4. It’s not about the money.

5. It’s about sharing the love. Principles, lessons and such have their time in the sun. They will continue but let’s remember what’s important. Kindness and love to all.

6. It’s also about living a productive life, helping others, providing good services, being honest and upright.

7. Make smart choices with consumer dollars - do not expect laws to dictate what you purchase. Put your money in your beliefs.

8. Do not waste time. Time is the most valuable thing in my life. With it I can enjoy family, friends, nature, and helping others.

9. Create a safe place for you, your friends and family. Safety in expressing values, priorities and personal thoughts.

10. Take actions that result in smiles. Do not harm anyone or anything. Be kind.

What does this have to do with MS?

Oh, so very much.

By better understanding my priorities and those of others it makes life easier. It definitely makes boundaries more effective.

It all starts with communications. As we better understand ourselves, use these insight to help understand others better.

I never watched GOT until my brother was writing his book. But when I started, boy did I learn a lot.

“It’s what we learn after we think we know it all that counts,” says my former riding instructor, Jimmy Williams. And it resonates today.

Keep learning. Use it live a better life with MS.

And know that, we’ve got this guys!

#takeTHATms!