Tuesday

Do Not Disturb - essential for living with MS

Probably one of the toughest boundaries to respect is the need for peace and quiet in order to restore the battery.  It is not unusual for an MS patient, or anyone living with chronic illness, to need to seek a "time-out" from others.  This is necessary for wellness and this is when the "Do not disturb" sign goes up outside my door!

I'm not trying to be rude or unsocial to family and guests, but after many a discussion they realize how important this little gesture is for someone like me.  The ability to just be quiet.  No stimulation - no one talking, no one waving their hands, no noises to distract and hurt the brain.  Just peace and quiet.

Often the "time out" is just a few minutes.  Maybe 15.  Depends on how quiet it is but sometimes it may take an hour to recharge.

There are many ways to create a "Do not disturb" sign.   Found these animal signs online and its pretty cute, especially if you have kids.  In fact if you print these up in black and white and let the kids color them in it allows for more 'buy in' from the entire family.  While coloring and decorating the "Do Not Disturb" signs remember to chat comfortably about your need for "time out" now and then.  It's not that you have gotten in trouble, but your body will be in trouble if the time out is not taken.

Have fun with your sign!  Here are some from Pinterest that gave me a little chuckle:  





Bottomline:  Be in control of your own health.  Set boundaries. Ask people to respect them.  Remind them gently.  Take care of YOU!   

and #takethatMS 

Monday

If you do one thing this summer...


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Tips for an Easier Summer

MS on the Road

My latest adventure took me through Wyoming and South Dakota. Find out what we did and the one tool that I will not leave home without in the future...  

Thank you Arctic Cool - What a great way to say #TakethatMS.



Live Better this Summer:

Juicing Recipes for Summer

Chia Pudding Recipe

Importance of Making a Plan B

Escaping the Red Zone of MS

Cooling and Healing Tips for MS


Sometimes it takes a meditation and a soothing bath to get a little inspiration. One of my favorite apps to help me is  Read more...
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Wednesday

Finding Confidence to Travel with Multiple Sclerosis

Thank you Arctic Cool for this opportunity to find better and more effective tools for MS patients!   We appreciate your continued support of our blog and MS community.

Traveling with MS is  never easy.  But there are some tips and tricks to make things easier.  With a good-size adventure on the horizon I've been testing some new gear and getting psyched.  One of the biggest concerns with traveling is not knowing how one's body is going to react.  Will the MS subside?  or will it roar its ugly face in mine?

Heat sensitivity can affect many of those with MS.  It will take me down faster than a nano second. SO, I'm getting out the defensive gear and cooling off!

I'm trying out a new cooling shirt to prep for possible hot weather.  We are traveling form Jackson Hole, Wyoming, (Grand Teton National Park) to Yellowstone National Park to Crazy Horse Memorial then Mt. Rushmore in South Dakota on a tour by Tauck Bridges tour aptly called "Cowboy Country".

Here I am trying out my new shirt from Arctic Cool:


And here I am after climbing a really big hill to get to the local teepee.  Yes, we have a teepee nearby.  Local people own it and hike there often.  It's a treat to visit and this day was no different.

Sporting my Arctic Cool shirt
- for when the sun decides to come out!

Caroline Craven at top of Bee Teepee Hill - 6.4 miles Rountrip

#takethatMS

Looking out over La Canada, the 210 freeway, and downtown Los Angeles off in the distant.  What a beautiful day!  Cloudy and cool but that's great for many of us who suffer from heat sensitivity.  I had my Arctic Cool cooling shirt on and several times had to take off my wraps and cool off.  Then, when the clouds and breeze came back, simply put my over shirts on my back.  Love the fact the cooling shirt had it's cooling technology.  It definitely gave me a small boost of confidence on ths hike and sometimes that's all one really needs to make a big difference in their life.  A little bit of confidence.

Feeling primed and ready - Here we come Rocky Mountains!

Cowboy Country - The Trip

The weather forecast was for blue skies and mid to high 70's.  Pretty darn perfect but that sun can be sneaky and warm one of up faster than appreciated, especially if that person has a malfunctioning thermostat in their body, such as many an MS patient who suffer from heat sensitivity.

So, despite the cool forecast, my go-to shirt throughout this 10 day trip was my trusty, short sleeved Arctic Cool in Navy Blue.  Here are some pics of me throughout my trip sporting this cooling device.  And there were times that my gratitude for this shirt was overwhelming.  One day in Jackson the temps were nearing 90F, which for this girlwithms can be detrimental.  It's one thing to be in warm temps but another to be walking around, outside, watching over young people and old people, with little escape in sight.

Our trip began with a beautiful two day stay at the Jackson Lake Lodge.  Out for our morning stroll before getting the day started, I'm sporting my tank top from Arctic Cool.  The morning was still brisk but the tank and the yoga pants made for great clothing during my stretching routine.



We saw beautiful wildlife on our tour of the Grand Teton NP as well as in Yellowstone NP.  

One of our bison...


Old Faithful.  hot just thinking about it.  The ground is hot. The energy is hot. The atmosphere is hot.  let's just say, the cooling shirt was worn every day and put on with a big sigh of relief.  


One thing I noticed though was the stench that comes from wearing a shirt like this everyday.  SO, easy fix - just hand wash it in the bathroom sink with gentle soap and hang to dry.  Easily dry by morning.  Mine was washed everyday - and trust me, it needed it!


We took a rest outside of Yellowstone National Park to check out a hunting lodge in Pahaska owned by Buffalo Bill Cody.  So cool.   The sun came out and boy was I glad that my navy blue Arctic Cool shirt was there to keep me cool.



We saw quite a bit of wildlife throughout the trip.  Some was difficult to shoot while others were easy as pie.  Easier than pie really.  

This little elk was close by but driving and behind glass makes for not the best photo. But at least the memory was captured and sometimes that's the best part of a photograph.   



We took a river float trip on the Snake with the Grand Teton Lodge Rafting Company and saw a variety of birds including this bald eagle.  


The trip was great and our guide was excellent.  Just happens that our guide, Wayne Johnson, is a local writer and knows quite a bit of history about the area.  Our raft was full of information and insightful thought.  Fascinating, really.  

Again, the morning started out brisk and cool, but we knew the sun was coming.  Sporting my Arctic Cool cooling shirt, another shirt and a fleece started out the morning on the water.  Come afternoon the shirts were off the cooling shirt was doing its job - keeping me cool.  

My Arctic Cool cooling shirts have become my new trusty stand-by.  Especially as temperatures are starting to rise for the coming summer months, the tank is put on when yoga or activities are involved.  Navy blue short sleeved cooling shirt used for almost every other event.  

How do they work?  There are tons of little, tiny microns that sense your rising body temperatures and activate a "cooling" technique within the fabric.  Well, maybe not exactly like this but that is my interpretation from a layman's standpoint. The point is, it works, and that is all that really matters to me.  

I just heard that they have come out with a long-sleeve version.  Thank you Arctic Cool!   Can not wait to try the long sleeve white shirt for the coming summer months.  Talk about hiding from the sun and saying:  #TakeTHATms!   


Click Here for more info about Arctic Cool and Cooling Shirts.  Thank you!

The trip didn't end with the wildlife.  We ventured on into South Dakota and took on Crazy Horse Memorial and Mt. Rushmore.  And, once again, my cooling shirt saved the day.  

Crazy Horse Memorial, South Dakota
It was a gorgeous day, but go to a memorial, with tons of people and lots of stairs and add a few museums, walks and bookstores and you have one tired puppy.  Yep, this puppy was hot and tired.  But the few degrees that the cooling shirt kept me, under the sun protection of a long sleeve blouse, kept this photographer very happy.  In fact, I felt a bit too confident... maybe.  But that's OK. 

Mt. Rushmore, South Dakota

Considering I used to freak out and be scared to leave the house if temperatures went over 80F, the fact I can now explore memorials, spend time with my nephews and see the world with confidence?  I'll take that all day long!   

###

 This blog post was sponsored by Arctic Cool and rightly so.  They make a great product designed to help us live better with MS.  Thank you Arctic Cool for all you are doing to help our MS community.   

Click Here for more info about Arctic Cool and Cooling Shirts.  Thank you!  

Monday

MS in Jackson Hole, Wyoming

Our Tour is about to start!  A scenic float trip down the snake river.  Camera is ready and so am I. We arrived two days ago. The weather cooperated and the Tetons showed their stuff.


 We took a leisurely hike yesterday to Christian Pond. The MS stayed at bay and I was able to walk the whole way.  It was not a long hike but we are at some elevation. And it was Gorgeous!  
 
The boys played with a frisbee that Tauck gave them as part of their care package for the tour.  We start in Jackson Hole, travel to Yellowstone then on the Cody and Mt Rushmore. 
 
I took a solo lunch yesterday with cheddar cheese soup and a Pako IPA from a local brewery.  The weather has been cool but I've been wearing my Arctic Cool shirts just in case.  Just knowing that they can cut the heat a few degrees...  I'm going to be away from internet and wifi and unplugging for a few days. Then I'll be back! 


 

More to come...watch this spot!  

Wednesday

Peeing One's Pants - Really?

The day has come.
Diapers? But I want to Snaughle with confidence!

Really?
Yes, really. Nervous bladder nelly here has recently been living in her disposable diapers and pads. These things are nasty for the environment. They must be. And if you wear one once but not soil it, well, that's kind of gross to reuse it. And then the red rash comes. I bathe. I clean. I dry. But one day in those disposable wraps will get me every time. Especially now that it's bikini weather.
But wait, I can't completely bash the disposables. Without them I would be a mess! Like just last week when I was serving jury duty in Burbank, California. Usually I have a doctors release. And I did this year. But it came the day after Memorial Day. How could I at least not try this year as I have been recently blessed with better days? Think of the hundreds of thousands of soldiers over the course of history and what they have done or are doing for their country. Time to step up to the plate Ms Craven. Time to step up to the plate.

Well I made jury duty and the case was dismissed by noon. Phew, I made it! And hadn't peed my pants. I took advantage of the restroom then went to my car and drove ten minutes to the Los Angeles River. And decided to do a little fly fishing. I wasn't really feeling it. Body and mind were out of sync. I watched the water for a bit. Made a few castes. Then headed back to car. Either way, Uh oh. Bad choice. Quickly I got to the front seat of my car. Time for the coffee cup. My bladder needed evacuating NOW! And I could tell the diaper wasn't going to hold it all. I hadn't had anything to drink. Where was this all coming from? So I tactfully positioned myself over the cup and then proceeded to overflow all over the front seat of the car. The diaper was used, the mess was mopped. Well, That was interesting. I cleaned myself off best I could and realized how thankful I was not to have been in the courtroom. Ack!

So, although my disposables have saved me time again, the desire for reusable protective underwear is intriguing. And now very accessible via Wearever:

Here is a great program that we took part in back a couple of years ago in 2015.  The promotion is not valid anymore but what a great way to help MS patients.

PROMOTION NOT VALID ANYMORE 

Check out this program with MS Foundation and Wearever:

This is great news! Talk about a win win for everyone. MS Foundation partnered with Wearever back in June 2015 to raise money to support MS Foundation’s efforts. Wearever is a health and wellness apparel brand with lines of incontinence underwear that assist those living with incontinence maintain their dignity while also being protective, comfortable and affordable. These innovative undergarments can be washed and re-used 250+ times, saving the user hundreds of dollars on disposables.
Wearever is donating $1 for every purchase of men and women’s undergarments made in June back to MS Foundation.


Thank you Wearever for helping us all with MS live a better live with our various illnesses. We appreciate you!This great program has ended so but we can still act today and see how we can help our bladders!


UPDATE: the panties came and I am sporting the smooth and silky as we speak. Go ahead, make me laugh and snaughle! While I know the underwear won't hold a pint I do know that I can leak with confidence! And that's a huge confidence builder. In fact I'm going a walk right now and now plastic diaper on my bum.

Thank you MS Foundation for all you do to help us With MS. Check out their website and to see all the great events, research and activities going on around the U.S.
Let's do this!







Monday

Guest Post "Just Another Haircut?"

Just another haircut?

by Jennifer Digmann


A British survey conducted by the hair care line Tresemme found that the average woman spends a staggering $50,000 on her hair over her lifetime. In addition, each year we women spend an average of $800 between shampoos and conditioners, styling products and haircuts. Plus, those of us who color our hair tack on another $330 a year.

Outrageous, isn’t it?

What’s worse is that after I read this statistic, it simply served as a reminder that I needed to make a hairappointment. After all it has been almost 6 weeks since I went short with my hair. Okay, maybe it is not as short as some people expected, but it is short to me.
Since being diagnosed with Multiple Sclerosis more than 16 years ago, my hair length is just another causality of this progressive disease as I’ve had longer hair (middle of my back) most of my life. My hair being cut short is kind of like my driving, working and walkingnone of which I am able to do anymore.


Please understand that I haven’t just given in to the disease. I have had oodles of physical therapy to maintain as much as possible, but it gradually has taken these things from me.

Because my arms and hands don’t function as well as they used to, I have made concessions to the disease. It started with simplifying my hairstyle (keep in mind I am a child of the lots-of-Aqua-Net-big-hair 80s, so you can imagine what I mean). Then Ibegan to ask my husband, Dan, for help. And while he could blow dry and flat-iron my hair with the best of stylists in town, how fair was that daily demand to him? So I have learned to accept and appreciate my natural curls. But it was not until the haircut I received 6 weeks ago that I felt totally confident with my “do, and with doing it myself.

My stylist, Elizabeth, put all of the pieces together in one hairstyle. A little shorter than shoulder length, minimal styling products, wash-and-go curly hair. And you know what? I love my cut! Plus, I have been getting lots ofcompliments on my new shorter style. Yeah, sure that wasn’t why I did it but going shorter and being complimented on my hairdo is a nice perk.

More than anything, cutting my hair has allowed me to regain control over something that my body was letting MS take away. I’ve regained control over my hairstyle, which I like. Bonus, it boosted my confidence, which I love.

Originally posted 12/18/13

MS is like an iPhone Battery...and I need a recharge!

Keeping ones battery charged with MS can be as tricky as keeping an iPhone 5 going all day. Remembering to turn off location services and programs running in the background is vital to keep an iPhone chugging along. But how do we do this with MS?How do we turn off those programs running in the background. That constant chatter of energy being wasted. Do we meditate? Medicate? Or both. And when it comes to our location services, how do we unplug ourselves from those wanting our energy? Do we withdraw? Or de we become strong and set boundaries?

So much in life has changed with my MS. Every decision, every thought is focused on how it will effect my mind, body and soul. While this is a good thing in the long run sometimes one really just wants to kick down a loaded cappuccino, go for a hike, enjoy a pipe on a cold and rainy day while reading Harrison, drink a glass of wine or two with good friends, tie some flies, hop in the car and drive...just drive. A certain since of freedom is stripped when a disabling disease like MS hits. Freedom in so many ways. Once a road warrior. I am now a shuttling sissy.

It started with a panic attack on the LA freeway amongst heavy traffic. No escape. Panic stricken, batteries faded fast. Eyesight diminished rapidly. Then the convulsions and dry heaving that would randomly hit never made it safe. Let cramps, not good for driving either. While these issues don't happen all the time, they've occurred enough for me not to trust my body, understanding now that my batteries could crash at anytime. Knowing this makes me feel vulnerable and vulnerability creates fear. Too much fear can strip us of our lives.

To a point we can quick charge our batteries: caffeine, tobacco, provigil, sativa, sugar, etc. But how long can we quick charge before the battery won't take a charge? And when we are left stranded there is no back up battery. No way to plug into the wall and recharge. We have only one battery. We must take care of it.

So how do we turn off those extra programs running? Visually I imagine the blinders on horses. Those eye guards that keep the horse looking ahead and not distracted. "Put your blinders on Caroline" and get to work. Focus on one project. Or one meditation. One walk in the rose garden. The point is to have just this one program running. And turn off all others. Blinders. This works for me, most of the time.

But there are those times when it doesn't work. When I need a distraction. And another distraction. And again and again until I have six programs running and my battery bar is slipping fast. "Put those blinders on." But sometimes it just doesn't work.

Then, finally, I stop everything and go lie down in a nice cool place that's not to bright. Closing my eyes and just being quiet. Recharging. Ahhhh. It takes strength to keep our batteries charged. To know what we need to do to take care of ourselves. To unplug from others when we are on low battery and turn off our location services.

For me this meant learning a lot about boundary setting. Rules. My rules for my health. This can be hard on friends and family. Setting boundaries can take a lot of explanation, patience and communications. But it's essential for defining our needs to keeping us alive and void of fear. To live life on a full battery. That's my goal. To manage my software and take care of this battery before it won't hold a charge.

Let's do this. Let's keep our batteries charged. Let's rid ourselves of fears and vulnerability. It's time. It's time to take charge and recharge.

#takethatMS

Essential Oils and MS

The Benefits of Essential oils




Essential oils (EOs) have been tickling and delighting noses for centuries.  The ability to create a spa-like atmosphere in one’s home or the scent of holiday cookies in the oven can instantly warm a heart.  And now they are proving that these oils make for a healthier, more natural way of living.  From house cleaners to medical treatments, EO’s are growing in popularity and proof and showing up in homes across the country.

Essential oils are highly condensed byproducts of plants and have been used therapeutically for centuries.  But there is little published research on many of them. This is beginning to change as more scientific studies on essential oils are conducted around the world.

EOs are applied one of three ways:  ingested, diffused aromatically, or taken topically.  Oils are considered to have relatively low toxicity and safe with proper application.  Oils such as oregano are “hot” and need diluting before application as they may burn or irritate the skin.  Citrus-based oils like orange or grapefruit may cause sun sensitivities and it is advised to wait 20-40 minutes before going outside.  Other oils like tea tree, or melaleuca, are safely used directly on the skin.

Oils are extracted from plants in a natural form.  Different parts of the plants are used as well as different extraction methods.  Plants from all over the world are sought after for quality and quantity.  They are used in perfumes, food flavorings, and medicine as well as in aromatherapy where the oils alter one's mood, cognitive, psychological, and physical wellbeing.

Because oils come from plants their qualities change with location, geography and local weather conditions, the time of day they are harvested, how they are packaged, shipped and stored.  EO’s are never exactly the same, a much different scenario than the synthetic-controlled substances of western medicine.   Because of this they are not standardized making it difficult for the blind studies necessary in getting funding and research.  It is also difficult to blind test an essential oil due to its aroma.  Masking the scent can be difficult or impossible. 

And because EOs come from plants that anyone could grow, big pharmaceutical companies do not tend to want them due to difficulties with patents, limiting potential profits.   Despite this, more and more tests are being performed to look at the efficacy of these natural ingredients as a result of consumer demand and popularity, driven by the demand for a more organic way of life. 


EOs have been found to have antibacterialanti-inflammatory, and analgesic effects.  Several clinical trials involving patients with cancer have also been published. And eucalyptus has even proven to have antimicrobial effects against e. coli.

Popularity in natural remedies has also been driven by those looking to avoid side effects from many pharmaceuticals including those often prescribed for MS patients.

Reducing stress and anxiety is key in helping those with MS and improving quality of life. Clinical trials have investigated aromatherapy primarily in the treatment of stress and anxiety in patients with critical illnesses and have been found to be helpful.

MS Patients often complain about insomnia. Diffusing essential oils such as lavender is proving to be a safe alternative to pharmaceutical interventions for mild to moderate sleep disturbances as well as a natural pain reliever.   

Nerve pain and muscle cramps are annoying problems caused by MS. Holistic healing sources also suggest peppermint oil for nerve pain while muscle cramps might respond better to lemon grass.

Dr. Axe promotes a specific essential oil protocol for MS patients on his website, touting the use of frankincense and helichrysum as an aid for multiple sclerosis.  In addition he recommends oils for holistic treatments from the flu to reducing cellulite.  

Essential oils are purchased at natural food stores or via one of the fast growing, multi-level marketing oil manufacturing companies such as doTerra and Young Living, found throughout the internet and social media. 

In 2014, as the industry gained momentum, the FDA took notice and instigated higher standards for manufacturing companies who claim that their products are being marketed as unapproved drugs including doTerra and Young Living.  No longer can an EO company or representative make medical claims toward their product. This is not slowing down the industry.  The $7.5 billion essential oil industry is expected to reach $11.67 Billion by 2022.


#takethatMS