Spring is here!

How are you celebrating?  

Amazing wildflowers and California natives going off in my hood these days.  Celebrating spring with beauty and bounty.







In light of spring, I wrote the following blog post for MangeHealth.com   These guys always have such interesting reads and I'm not just saying that because I write for them.  They really do have interesting stuff!


How's your Spring?  

#takethatMS

First PPMS Drug Approved by FDA - Ocrevus

Wow.   The first ever PPMS drug is approved by the FDA.   Way to go Genentech!  

I'm not surprised as my research led me to write this article about it for Healthline.com.


  
The big question everyone is asking is how much will this cost and will it be covered by my insurance?   We do not know yet but will keep you posted.  

In the mean time - read more about Ocrevus and Genentech and thank you for all you do to say #takethatMS.

 

Lizard brain will survive!


"I will survive", by Cake, is bringing up memories of kayaking the McKenzie River, Oregon. Perpetually in my CD while driving up the river, I may never have progressed as far without the help of that quirky music. And friends. What a change for me, from working with horses 24/7 to playing with friends and everything outdoors. I had been a class IV river guide on the Kern River, California, but not one of your better ones. I preferred creative food buys and driving shuttle. And the people. Always seems to come back to the people in my world. But that was near ten years earlier. My life had been horses, period. Time for a change.




My love hate relationship with water I knew no other feeling. Those beautiful moments, the ones where my brain clicked off and let my instincts go, will forever burn in my mind. The green water of surfing the ocean outside Florence, Oregon, window shades and stern squirts, creeking, floating. The moments it clicked there was nothing like it. One with nature.

A beautiful spring day, friends around, sun shining. McKenzie river refreshing after a day in the corporate dot boom. Clover at just the right level. Side surfing, moving it around, relaxing, rolling, playing with river otters. Yeah, that's one with nature.


Those are the memories I want to hold onto. Because the other memories, the fears and anxiety of not feeling one with nature. Of feeling in such discord that the slightest roll left me swimming and freezing on our annual News Years Day float trip on the icy upper McKenzie. Or the time I entered the Redsides White Water Rodeo - 1997. Old-school boat was fine with me. Redsides already ate my lunch earlier that season. Luckily a nearby friend anchored my skirt down as my hands were barely able to grasp my paddle with anticipation.


Let me go first, I'm ready. In other words, get out of my way before I panic and run in front of all these people. Luckily my lizard brain took over, instincts ruled and I had an awesome run. Even the Patagonia rep was clapping, good sign. Unfortunately my thinking brain kicked in. By the 5th round I lost it. Missed my roll and swam. Too freaked out to go back in I forfeited my round and lost the tournament.

That is what we trainers call hot and cold. Not a competitors winning strength. But it was a push for me, to be in that rodeo. I loved kayaking. I hated kayaking. I loved the lizard brain. Detested the thinking brain. of all things it was great for my multiple sclerosis.

The water therapy alone was enough to keep my MS at bay for several years. Rolling in the McKenzie is a bit of a breath-taker when there's snow on the ground and you are layered in fleece and dry-suit. My friends were another therapy. Especially the one I didn't listened to that much. my chinese doctor.

Kidney yin deficiency. Follow the diet. Follow the life style. But did I? Nah. I kept burning along, literally. Until I burned out.

Thirteen years later and how am I finding ways to survive MS? By following a kidney yin deficient diet. After two more diagnoses and research it became obvious that the answer for me was right in front of me. And had been for years!

So, what is a Kidney Yin Deficient life-style? That will come in another post. Lucky my fingers have lasted this long...

Free MS Webinars with Certified Life Coach, Caroline Craven

~Thank You for all of your generous feedback~  


Change is in the air!

So many of you were asking if we could post recorded sessions with life coach, Caroline Craven, on the website versus having them live on Thursdays.  It was just too much for folks to attend so we made a change.   

MS patients and probably everyone suffering from chronic illness are always on the hunt for tips and tricks to live better with their illness.  After living with MS for over 15 years, certified life coach, Caroline Craven, offers free tips and tricks via four free life coaching sessions:  


"May I Be" The art of moving forward with multiple sclerosis. 

This is a four-part series, three of which have been recorded and posted here on the website: 

  
The free recorded sessions include tips on how to Be Happy, Be Safe and Be Healthy.  Coming soon is the fourth session on how to Be at Peace.  And one thing I can say about the last session is there may be some yoga involved.  It sure was necessary today bringing me some peace after a very grumpy morning.  These free, recorded sessions are about 30 - 40 minutes but you can stop and start and walk away anytime.  


WELLNESS WEBINARS  - LIFE COACHING SESSIONS 

"May I Be" The art of moving forward with multiple sclerosis.

Part 1:  Be Happy
Part 2:  Be Safe  
Part 3: Be Healthy  
Part 4:  Be at Peace - Coming Soon


Join me as we all say #takethatms!

Win a FREE Cooling Necklace!

 Time for a contest!   

GWMS has partnered up with Nano-Ice and we're giving away a FREE cooling necklace.  It may still be snowing in some parts of the country but summer is just around the corner and it won't be long before it all changes.

Take a photo or selfie of you sporting some orange and #OrangeforMS during the month of March.  Help build awareness and enter as many times as you like.

BUY ONE TODAY!   SAVE $10 and use CODE: ff16 at Check out for $10 OFF and buy one today!




These cooling necklaces are great.  Nano-Ice has a couple of different versions.  This one, with the big, cold balls, packs a significant cooling effect on the body which can be very helpful to those with MS-induced heat sensitivities.    


Click here for other models and colors.
#orangeforMS
Silly sketch 
#OrangeforMS
At my sister's wedding last year.

#OrangeforMS  
Back when I used to kayak - known for my orange, old-school boat.
Martin's Hole, McKenzie River, Oregon  

How do you like to sport your #OrangeforMS?

Share your photo via social media and enter to win a very cool, cooling necklace!  

Enter as many time as you want.  March is MS awareness month.   Let's cover it with folks sporting some orange.  

#OrangeforMS

#passiton

March is MS Awareness Month 

Time to do it - time to paint the interface ORANGE with MS awareness and time to pass it on.
Are you on Facebook?  Here's a great way to be orange for the month of March, or longer:  Go to the Facebook portrait filter options and select the MS option.   


You can also #passiton with the following Facebook cover image.  My dear friend took this photo the other day knowing that these are one of my favorite flowers.  There's something so delicate yet remarkably strong that intrigues me.  Feel free to right click and save this image to use with your social media.



Anyway you do it - let us know!    Share your image below or on social media.   

Love and Multiple Sclerosis - finding peace

Camelia Peace Heart Descanso Gardens


Love and MS

My most recent article about living with MS, "Loving Yourself Can Help You Battle MS". Found here at Healthline.com

I'm in love with writing these days.  It is so interesting how life takes us down turns and roads and rabbit trails.  That is how writing became a part of my life. Writing is a cathartic release for so many people with chronic illness and MS.  Even if one doesn't want to do it professionally, the use of blogs and journals can help alleviate a lot of stress as well as offer guidance for others.

Garden Visitor
In saying goodbye to February, I find myself reminiscing about activities and accomplishments.  It seems that with MS the ability to spend half o f our lives on the couch can be overwhelming and suffocating.  It's good to look back and realize, hey, I actually did some pretty good stuff this month. And you know what - that feels awesome!

AWESOMENESS of FEBRUARY:

Anemones Descanso Gardens 
  •  Ate healthy
  •  Saw several friends and greatly enjoyed our time together
  • Spent time with Family
  •  Went to several social outings
  • Yoga practice continuing strong
  • Getting things done - Even though my desk looks like this:   Work is not bottlenecking much in my area.  Making calls, filling, taxes, all of it.  Touch it once and get her done.  
  • Wrote several new articles on MS and had them published.
  • Wrote a new budget.  Doing some serious savings and wanted to make some adjustments.  You may now how this feels. It takes some major priority setting.  
  • Medical - making appointments,, even the annoying poking and prodding ones. 
  • Wrote letters.  Sent notecards to friends.  Smiled while doing it.  Enjoyed the process.  
  • Spent time in the garden.  Both mine and Descanso Gardens.  
  • AND Helped out at a children's fly fishing clinic at the Pasadena Casting Club.  Absolutely loved it.  
  • Showered myself with love using positive words and feeling despite the fact I was a gloomy guss all month.  
Pasadena Casting Club Children's Clinic

All in all, made some good memories and am quite grateful.  Of course with MS, these memories may fade very quickly, but at least they are here today to enjoy.

What are some of your memories?


hiking behind my house #lcftrails
#takethatMS

Inspiration! #takethatms





My favorite meditation app:  Calm (click here to download). Love this tool to help manage the stress of life each day. Just 10 minutes a day. Sometimes meditation takes place in the bath tub where it's quiet and peaceful. And safe from interruptions.

 

Afterwards I often enjoy a nice cup of mellow, calming tea.  My nerves are always a bit frazzled with MS and the tea is greatly appreciated. 

 

Homemade bath salts take the event to a whole new level... 
 
Just ten minutes a day can change your life. 

What's your favorite way to take the edge off? 

 Try it. Talk to me. We've got this! 

#takethatMS



The little things and the not so little things...

Yoga, walk, shower, tea...I love mornings. Well, sometimes. They may be slow or painful, but as long as they keep coming, I'll take them. So random this MS. Yesterday was a tough day. Legs on fire, tremors a trembling. Energy, attention and focus was channeled for four hours of meetings. Then honestly, I was done. Sipped water, nerve-calming tea, and watched quiet, innocent television as my eyes were too tired to read. When the sentences start leaping off the page you know its time to stop.



I just couldn't take anymore interaction. Anymore sound. Anymore energy taken from me. I know my boundaries. I know that if I over do today I'm done for tomorrow.
This morning was completely different. Strong. Balanced. Calm. I practiced my morning yoga on the circle, accompanied by two dogs, overlooking the Arroyo. Followed by a dog walk and now sipping some tea. Basically, a gorgeous morning at a local retreat.
What causes the difference from one day to the next?
"No two the same." But how can we better manage our day to day life?
Everything adds up. Diet. Activity. Energy. State of mind. Stress level.
While I had been eating some needed calories and tasty food, the recent increased consumption of red meat, processed foods, caffeine, salt and gluten brought extreme inflammation to my whole body. In addition, I pushed myself last week at Hot Creek. Even though I was managing every aspect, it took a toll.
At Hot Creek, I found if I could "mind shift" into other states of mind, I could better manage my MS. In order to do this, I did quite a bit of resting poses, some yoga flows and meditations to work through the fatigue, clumsiness and nerviness.
Then I returned home to hours of meetings and tasks I wanted to get done but my body started to shut down. But this time I didn't turn to my mind shift options. I turned to Caffeine! Ugh and horrible I know but the coffee was flowing and so was I. Until I crashed. And crashed I did.
One bad choice and I paid the price.
I was talking to a good friend the other day about how I felt my bounce back has been improving. While I keep this image in my mind, heart and soul, I also acknowledge that I'm doing less and less at times. I feel its a continuous struggle, finding that balancing act between too much and not enough. Making every right choice or just being human.
Many folks want to write off my MS as returning to a mild form. Well, Its returning there for a reason.
YOGA. I can't say it loud or strong or often enough. The one thing that has worked better than anything other than my three F's (Faith, Family, Friends). YOGA.
I started way before I had MS. Not serious but got the basics. I continued throughout my MS. From physical to mental balance, everything could and does improve with my practices. Some days I can't stand too well. Others I'm balancing on one foot.
As long as I keep waking up. As long as I keep my Faith, Family and Friemds. As long as I watch my diet, my life style and embrace everything mind body and soul, them can I continue living. Yoga. Nutrition. Support. Food as Medicine. Vitamins, herbal supplements. The list goes on. Start with the basics and work the others in.
Maybe I can still walk because of the yoga and exercising. And because of all the minute details I manage. Some days I can't walk too well and I will fall and trip. My legs just now started to feel a little twangy so I poured a glass of pineapple juice. The bromelain is a natural antiinflammatory. It just sounded like to right choice.
"No two the same". Whether we are talking people or days. My goal, every day, is to manage my symptoms so I can have more consistent days.
So here. Here's to the three F's of Faith Family Friends. Here's to Yoga! Here's to trying everything, finding what works for you and for creating an MS plan that will help you live a more fulfilling life.


Bee pollen, herbal tea and red wine

I find it fascinating to look back at old posts and see what I was working on and how my MS was doing.  I haven't taken clonazapam/klonopin in years and so thankful to be off of this horrible drug. Hated being on it!  Don't miss it all.  Intereesting to read effects of going off it because never even think about it now.  And so many folks with MS are prescribed this drug for symptoms.  Be careful with it. My supplements have changed quite a bit over the past 4 years along with other bits of this post, but it's intriguing me to read it and remind myself of things that have worked in the past.

Original Post from March 3, 2013:

For the last few weeks I've been reducing my klonopin ever more as I head toward my goal of being off this drug. My doctors say I can take three pills a day. I wouldn't be able to function as it makes moshy pit head syndrome. For the past year I had been taking a half of a pill at night and then another half when I woke up around 3 am. Then slowly reduced it to a 1/4 pill at night if I feel the need. Supposedly klonopin needs to come out of ones system slowly especially if one has been on it for years as I have. A sudden stop could cause seizures. Ironic since the drug is an anti seizure drug. But for now I'm taking a 1/4 of a pill once a day or a couple of days.
What's amazing is the amount of short circuitry and nerviness that has increased since I've reduced the klonopin. Talk about tingling me silly. I swear there is a conversation going on between my left knee and right thigh. Well wait. Actually it now seems like there are a dozen different nerve endings all standing on their soap boxes, shouting at the top of their lungs, "Me! Me! Me! Choose Me!"
But I'm sticking with my plan. I will be off this drug.
In the meantime I'm finding peace with herbal tea, bee pollen and red wine. In fact I'm drinking some Chinese detox tea, Trader Joe's mint tea and bee pollen as I write. My friend just turned me onto bee pollen so this is day one. Here's some info on it: http://www.mercola.com/article/diet/bee_pollen.htm
In addition I'm drinking my shentrition (getshen.com), taking my vitamins and massaging coconut oil all over my body. Coconut oil is amazing and seems to heal all that ails. Here's my cheat sheet of supplements:
Wine is a supplement? But drinking isn't good for MS is it? No, not really. Alcohol is a toxin and heats up an already MS-inflamed body. So why do I add wine to my list? A glass or two not only tastes great but there are some health benefits to red wine and it is nice to take the edge off now and then. And to take the nerviness down a notch. I am no doctor but have lived with this disease for twelve years and this is what works for me.
What also works is falling head first into a bottle with good friends and family. Been there many times. So, I'm not perfect. Who is?
Life is about living and exploring. Not hiding under the covers.
Today is Saturday. I'm off to thrive in the garden! What are doing to thrive today?