Join us on the road at http://MSontheRoad.com as we travel through California! Having fun with three girls with MS. Learning and enjoying the area and each other.
Just a few thoughts to kick off this beautiful day!
Caroline Craven - Certified Life Coach, MS Advocate, Motivational Speaker, Writer & Patient Expert living with Multiple Sclerosis.
Posted with Blogsy
Raising Funds for MS Awareness
Hi all! For those not familiar I have chosen Nancy Davis' foundation, The Race to Erase MS, as my charity this year to help raise money and awareness. I'm raising an extra $1000 for this project. While it might not seem like loads of money, it's enough to make a difference and a reachable goal. If all of my friends donated $10 we'd be well over $1000! It adds up quickly. Click here for My personal fundraising page.
The foundation raises funds for the Center without Walls program. Click to Learn more.
Taken from their website:
Center Without Walls - Program Overview
“The Race to Erase MS wanted to build a winning team so we sought the best and the brightest throughout the world to create the Center Without Walls program.” – Nancy Davis
Funded by the Race to Erase MS, the Center Without Walls program (CWW) has provided support that has permitted the medical community to link together multidisciplinary scientific programs and expertise across the country to advance the understanding of the cause of MS and to develop new treatments. The Center is a break-through success because of the vision, insight and flexibility of these extraordinary doctors.
The Center’s theme is simple: communication – doctors working together toward a mutual goal. When this goal is reached, all will share in the victory.
Keep up the great work Nancy and team! Let's do this!
Planning for a great event this Monday!
Looking forward to seeing some old friends and meeting new ones in Templeton next week at the Wellness Kitchen.
What would you want to hear about at this workshop? Post comments and join the conversation!
Friends, Road Trips, Forgetting About MS
Sometimes it just seems necessary to forget I have MS. Put caution to the wind and just enjoy life. Not worry about what I am eating or doing. What the weather is like. What the activities on the agenda are. Just to forget and live the moment free and clear.
But please note, that while I put caution to the wind, I did pay a price with my MS. Came home to a several day detox and boy did I need it! A couple video clips after the weekend, a morning chat and some free flow movement.
Throwing caution to the wind is tough to do with an Autoimmune disease always nagging at your heels. There is always something I could do better to manage this disease. But sometimes you just want to say, TakeThatMS! While it may not be the physical solution to your problems, it may be the mental solution. That's what it felt like to me.
This past weekend I took advantage of schedules, friends, good weather and fun times, driving north to central California coast via hwy 101.
 |
| Quintessential California coast, train tracks, strawberries ready for harvest, palm trees and Santa Barbara off in the distance. |
We took a quick pit stop at Refugio State Beach with its magnificent display of Palm Trees.
As the Hwy winds away from the ocean and up and into the valley we are devastated by the lack of green. Not surprised, but very sad. The drought is wrenching havoc on our agriculture. Most livestock has been moved to wetter grounds.
Then we headed to the quaint town of Los Alamos to Bedford Wine Tasting. We met Stephen, the owner, and had a nice local chat about.
Some amazing chalk art at the winery and a little taste of spring outside.
The next day we headed to Creston to see a long time friend and cutting horse rider, Patti Bello, at her winery, B & E Vineyards.
Yes, while it's fun to throw a little caution to the wind, I did pay the price. Junk food, eating out, wine tasting. Just a couple of days can change you. I felt quite inflamed after this weekend. No doubt, right?
Now time for some healing and anti inflammatory action!
Pomegranate tea, detox tea, Bragg's apple cider, Shentrition and mung beans make for an MS healing diet. A couple of days of this and I feel back to new!
What a great time with friends, Playing games, celebrating Valentines Day. Not being forgotten.
Yep. Friends, road trips and just being free for a day or two can make a real mental difference.
Now it's back to work and managing my MS. Lets do this!
"New Food = a New You"
Girl with MS is coming to Templeton, California, March 3 at the Wellness Kitchen:
Caroline Craven, Girl with MS, presents "New Food = a New You", an interactive workshop introducing nutritionally sound foods to help manage Multiple Sclerosis.
Join us as we engage together and learn to thrive with MS through nutrition and mindful eating. We will review a variety of MS friendly foods and evaluate your dietary choices to see if you're living at your optimal best.
Caroline Craven, a graduate of Cal Poly, SLO, is a certified holistic nutrition educator and life coach, residing in La Canada Flintridge, California.
RSVP by Feb 28th to the Welness Kitchen at 805/434-1800
MS on the Road
Follow along on some of my adventures at MSontheRoad.com
Today, it's all about keeping it Spoice....
Sometimes I travel or stay local but another little piece of me on my life with MS. It's just fun stuff. Join along!
Doctors should be here to help, not stress
As those who have been following know, I've had some issues this past year with my neurologist. My lovely doctor of 10 years retired. The one who saw me at my worst. The one who diagnosed me. For ten years we worked on finding ways to thrive with my Ms and not suffer. We used nutrition, yoga, meditation, and more. We reduced stress from my life. It became a daily part of my life not much different than a diabetes managing their insulin. Managing the MS battery takes effort. The result: MS symptoms waning. So shouldn't this be a good thing?
I was referred to a neurologist upon her retirement. I attended her for three years but was getting frustrated at her inability to answer questions or to help me. She referred me to a neuromuscular specialist in her office and mind you, this was just last summer, I was told that their office didn't have my medical records from my diagnosing numerologist. Never could find them. So, this doctor had been treating me blindly for three years. No wonder she didn't know anything!
So another round of tests and MRIs to replace the ones that were lost and then lo and behold, my records were found! As soon as I went to yet another new neurologist thinking I would get some answers, they "found my records". It took two letters, at least six phone calls and two months for those records to make it to my house upon which I sent a copy to the new neurologist. This was twelve years of my history and I don't think he even read it. He reviewed a few charts at my last visit, laughed at me when I asked for my regular jury summons release and basically scooted me out the door in twenty minutes. With NO answers just more questions. He is not convinced its MS because I don't present as physically as others? Wtf? I look good, been taking care of myself, therefore I no longer am ill? What about my daily issues? Cognitive thinking, pain, fatigue, balance, vision?
I am so stressed by all of this. On top of it all he put down on my records that he thinks I'm bi-polar and have mental issues. Well, who the heck doesn't Have some mental issues with MS? It's an emotional roller coaster. Do these doctors know anything about MS? Who certifies these quacks and why do they even take patients if all they're going to do is run tests and laugh at you. I've never been so humiliated in my life. Between his visit and reading his notes I received yesterdefay, well, yes, today I may be bi polar! Crazy, mad, sad and depressed all at once. Funny thing is I felt fine before starting with this doctor. Here I thought he was going to be the answer. But FAIL!
Luckily I have a great Plan B. I got approval to see Dr. Weiner at USC and then I'll be joining a doctor down there that focuses on multiple sclerosis. Enough of these wack jobs.its just a matter of scheduling. At least it some peace of mind.
I have spent well over $2000 this year on doctor visits, MRIs and tests. Were they necessary? If the doctors had my medical history would they have needed to run all of these again?
Bottomline, good doctors should not be allowed to retire.
Found old entry never posted - Dragged into R and R
Wow. Found an old journal entry not quite finished and never posted... A piece of my raw mind from a few years back:
 | ||
| Two Bunch Palms, Desert Hot Springs |
Dragged into some
much needed R & R
It finally hit me .
The necessity of this vacation.
While floating on my back in the whispering grotto of Two Bunch Palms, a
silence from under water took over my thoughts. The healing waters and floating noodles created a buoyant
bed while I stared up into the blue skies. the wind was seen not heard. Blowing circle of trees, half palm and half pine. Looking one direction confirmed I was
in the desert while the other brought close the neighboring foothills.
As the wind picked up and the storm moved in the wind
drifted lower, hitting the palms in the quivering sun before chilling the water
resting on my legs. The wind
swirled around. Crows hung out in
the palms but the water kept them quiet.
Finally I asked how I could have anger for coming here. I used work as a cover-up for the anger
at my illness that was exacerbated.
I was angry at me but took it out on everyone else. Even though it wasn’t my fault, how
could I get so behind and be so irresponsible with my future? It’s not that, I just don’t like
feeling poor and out of control of my life.
I have more solace at my house but let’s not forget the
feelings from these past three days, the anger and drunkenness to the calmness
and clean. Great times with my nephew
and family.
Breakfast Sunday was good, easy, light variety of
continental plus some eggs and potatoes.
Monday’s was a contrast but also I was sick and didn’t feel like
eating. Still angry, still needing
more of a release.
3 mile walk around compound in robe, flip flops, road runner trail around 7A. breakfast and then spa services at
9. Elia. Hope to never forget Elia. Life changing were those two hours. Water all day and night. Flushing those toxins...
Clueless family, Sensory overload and MS
After spending time with my clueless family about MS, seems a good time to repost these great resources on how to explain MS to family, children and friends. One would think that 13 years with the disease would teach them something. But not really. Everyone just seems to live in their own worlds. Me too I guess. Guilty as charged.
My MS has caused extreme sensitivity to sound/noise and other stimulators, like light, television, etc., and considering I live in a house where someone who can't hear refuses to get a hearing aid, well imagine the TV at volume 78 all day long!
But for MS and this last weekend, man what a pain! Literally. I was invited by my family to meet for breakfast. At the loudest sports bar ever. During football playoffs. The sound was so deafening that my MS went bonkers. Hands started shaking. Head shaking. Thought I wasn't going to be able to eat. 36 TVs in my line of sight. I had to find something simple to look at. The table. There was one spot on the table that was quiet. After dropping my fork several times I just sort of gave up. Making earplugs out of my napkin helped. But sensory overload has been one of my greatest MS challenges since 2001. That's a long time for family and friends to ignore or be ignorant about.
What hurt the most is my family's utter disregard for my health concerns. They would never take an alcoholic to a casino but they know nothing about my MS and that is the saddest news ever. I've cried almost every morning since the new year. Not my usual way to approach life. But when folks don't get it. When friends and family don't get it. Well it hurts bad.
We need more awareness for MS!
Information about MS has grown significantly since being diagnosed with MS. Much research and alternative thinking has created many new resources online to draw material from. Some resources are very clinical while others are personal musings, both of which are invaluable for a random disease like MS.
Between search engines, Facebook and twitter feeds dedicated to MS, the information is excitingly overwhelming. Never have I seen so much variety in researching this disease.
One of my favorite Ms organizations is located across the pond:
Multiple Sclerosis Trust
Follow on twitter: @MSTrust
Check out these great resources for families and friends of this with MS!
Way to go MSTrust!
Spa Day! Time to spoil myself rotten.
Holidays are over. A new year has sprung. Feeling inspired and motivated after some glum times, took advantage of the weekend and had an absolute me day!
Started off with several big glass of water, morning decaf coffee, reading and ipad time.
Picked up a few of my favorite reads. Morning excerpts sound good.
Kent Haruf, Pam Houston and Jim Harrison. Just a smidge of their work and my library.
Since the broken toe is still bothering me I went for some bathtub yoga. Put on some music, light some candles, take a nice shower, wash my hair, scrub the body, etc. Once cleansed I let the water fill the tub, sometimes adding sea salts or herbal bath salts.
I grew up with a shower/tub and a father who knew the importance of a four minute shower. For over forty years we lived on septic tanks and through many droughts. Water is the most underrated asset in Los Angeles. This bath time is quite an extravagance for which I am very appreciative.
The Water Wars of California, a very important story, is unfortunately lost on many residents in our beautiful desert oasis. Do you remember the film, Chinatown? Or the more recent, animated movie, Rango? Check them out for sure! The Los Angeles Aqueduct (photo from Wikipedia) is the cause of much consternation.
Out of respect for water, I use hair products hand made by Daryl GlinnTanner at Divine Response. You can practically eat these products they are so natural. Since we were on septic tanks for many years and as an outdoor enthusiast, I appreciate that all of her products are grey-water friendly. The scents are refreshing but can also have scent free which is nice too.
And oh boy did it feel good!
Scrub a dub dub. And then as the warmth of the water and steam start to soften my muscles, I slide into some gentle stretching positions while sitting in the tub. Now, the tub isn't that big so there's not a lot we can do. But enough to get this MS body in motion. Generally I do a little twisting and some nice forward stretches over my toes while seated, with legs straight. Taking opportunity of all things bath: loofah, soap, pumice stone, nail brush, I am aware of my stretching and movement.
Today I used loofah gloves and one of my favorite soaps which Santa delivered in my stocking, l'Occitane's Almonde exfoliating soap. It's gentle but great for getting rid of that winter coat!
The images below show more than I can do in the tub but I don't stop when I get out of the water. (I got this image from Fontbros.com. They have all sorts of interesting fonts.)
Lubricating the joints and the skin! Now time for lotion. Coconut oil is a natural favorite of mine.
I stretch in yoga type positions and rub lotion on, all with intention. Feeling each nerve and muscle. Rubbing and massaging. Becoming increasingly aware of how my body feels, sinking slower into each movement.
While I am not actually doing yoga, I'm using this time to center myself and to get the body flowing in a gentle way. Tubs aren't large but just simple fold over stretches help a lot. It's the awareness and intention that is most important to acknowledge. Spend time with your body. How is it physically? Mentally? How is the MS? All things to consider while waking up the mind, body and soul.
From this point I can do anything. Its a me day! Garden? Sure! Let's dry some herbs with this cool gift from my sister-in-law and Overstock.com.
Then getting a burst of inspiration I pulled out the paints. I recently purchased a book for beginners on painting with water colors. Lots to learn! Started with this one lesson on making a sunflower. Got through stage 2 and went off on a tangent. Then tried a different approach. Not that successful in beautiful art but the time spent outside, on a gorgeous Southern California day, was priceless.
I stopped following the instructions after stage 2 but loved the experience. Just to lose yourself in the day with the delicacy of the brush, the water, the paper and the paints. It's all about controlling the water. As I said, lots to learn.
Time with sunflowers and paints done for the day. Yet so much daytime left! Love these days. And love the connection of water throughout the day. From water conservancy and awareness in the shower to managing water with paints. Wonder what other water relations I will stumble upon?
And then, if the day couldn't get any better, a great friend called and invited me to road trip in Colorado. This will be my MSontheRoad adventure for April. Wahoo! This means spring fly fishing in Boulder or somewhere. Ah, the water source. Here we go! All things water...
Started off with several big glass of water, morning decaf coffee, reading and ipad time.
Picked up a few of my favorite reads. Morning excerpts sound good.
Since the broken toe is still bothering me I went for some bathtub yoga. Put on some music, light some candles, take a nice shower, wash my hair, scrub the body, etc. Once cleansed I let the water fill the tub, sometimes adding sea salts or herbal bath salts.
I grew up with a shower/tub and a father who knew the importance of a four minute shower. For over forty years we lived on septic tanks and through many droughts. Water is the most underrated asset in Los Angeles. This bath time is quite an extravagance for which I am very appreciative.
The Water Wars of California, a very important story, is unfortunately lost on many residents in our beautiful desert oasis. Do you remember the film, Chinatown? Or the more recent, animated movie, Rango? Check them out for sure! The Los Angeles Aqueduct (photo from Wikipedia) is the cause of much consternation.
Everything is done with intention.
Today I used loofah gloves and one of my favorite soaps which Santa delivered in my stocking, l'Occitane's Almonde exfoliating soap. It's gentle but great for getting rid of that winter coat!The images below show more than I can do in the tub but I don't stop when I get out of the water. (I got this image from Fontbros.com. They have all sorts of interesting fonts.)
But I also love these natural products by Happy Acre Goat Farm in Templeton, CA, which I used today.
I stretch in yoga type positions and rub lotion on, all with intention. Feeling each nerve and muscle. Rubbing and massaging. Becoming increasingly aware of how my body feels, sinking slower into each movement.
While I am not actually doing yoga, I'm using this time to center myself and to get the body flowing in a gentle way. Tubs aren't large but just simple fold over stretches help a lot. It's the awareness and intention that is most important to acknowledge. Spend time with your body. How is it physically? Mentally? How is the MS? All things to consider while waking up the mind, body and soul.
From this point I can do anything. Its a me day! Garden? Sure! Let's dry some herbs with this cool gift from my sister-in-law and Overstock.com.
I added a few herbs to get started and is currently drying and creating good smells in my bedroom. Have plenty more herbs to dry which is good for cooking and bath products. Mmmmmmm.
I stopped following the instructions after stage 2 but loved the experience. Just to lose yourself in the day with the delicacy of the brush, the water, the paper and the paints. It's all about controlling the water. As I said, lots to learn.
Time with sunflowers and paints done for the day. Yet so much daytime left! Love these days. And love the connection of water throughout the day. From water conservancy and awareness in the shower to managing water with paints. Wonder what other water relations I will stumble upon?
And then, if the day couldn't get any better, a great friend called and invited me to road trip in Colorado. This will be my MSontheRoad adventure for April. Wahoo! This means spring fly fishing in Boulder or somewhere. Ah, the water source. Here we go! All things water...
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