Wednesday

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.

 

Tuesday

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...

Saturday

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!

Thursday

Race to Erase MS, Nancy Davis, Dr Weiner: Winning!

Time to Erase MS!


For those who don't know about Race to Erase MS, Nancy Davis and Dr. Leslie P. Weiner, well, you have a lot to learn about awesomeness in fighting multiple sclerosis.
Nancy's foundation, Race to Erase MS, not only raises awareness and lots of money but she's finding answers and helping others through her Center without Walls Program. And all of this while living with MS and raising a family.

First off, Nancy holds a wonderful Gala every year to raise money to find a cure for MS. I went one year and it was amazing! I highly recommend it. At $1000 per seat it's not inexpensive but a wonderful opportunity to raise funds for MS and have fun. There are also ways to sponsor and support at all levels.

Race to Erase has also set up an easy way for individuals to raise money for fighting MS. They have a program called the Virtual Race to Erase MS. I just signed up!
I've been deciding which foundation to direct my fundraising efforts from MSontheRoad and have decided on Race to Erase MS.

So why did I choose Race to Erase MS? Because they rock!

Nancy raises money for a program she developed called Center without Walls. While Nancy came from an affluent background and can afford many medical needs and luxuries, she knows there are many folks out there that need help. A lot of help. Thus, Center without Walls was created. Here is some information 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.

Partnering with the Best

While Nancy has the illness, energy, ideas and funds to help, she also has the smarts to surround herself with the best of the best. Now we are talking about Dr. Leslie P. Weiner from USC. I had first hand experince with Dr. Weiner back in 2001-2003 during a three-year, double-blind study for a T Cell vaccination. I got to see Dr. Weiner on a regular basis. And boy do I miss that MS intelligence.
But now Dr. Weiner has a new facility with some great staff. Check out the USC Multiple Sclerosis Comprehensive Care Center and Research Group.
I am so stoked about this. I just spoke with Pat, the project manager at the facility. She remembers me from the USC study ten years ago!
I explained my situation. How my diagnosing neurologist retired and referred me to another Doctor who after three years of seeing me told me she didn't have any of my history or medical records. She "treated" me without knowing anything about my illness. Since it was becoming a joke, her inability to treat anything since she didn't know anything, I found a new neurologist. After several tests, time and money, the new doctor said he wasn't 100% sure I have MS and wanted to send me to Dr. Weiner.
Talk about full circle. And why this doctor laughed at me when I asked for a jury excuse. He said I looked great. Since when does looking great mean your MS is OK? I tried to ask him a few question about my tremors, loss of right hand that day, weak legs and balance. He didn't have time. This was after waiting two hours for him! I stumbled and fell walking back to my car. While he ran a litany of tests which I will use, he clearly doesn't understand me or my MS.
Frustrated beyond belief I called USC and spoke to Pat. She is getting me some answers and a new neurologist. I'm hoping to get in to see Dr Weiner if just for a consult after all of these years. He's not taking new patients but I know the others doctors there are all MS focused. We will see.

Bottom line, I'm finally in good hands again!

And because I wanted to, I ordered a cool bracelet to raise money for Nancy's programs.
Nancy is always thinking outside the box and partnering up with some great folks. Check out this group who makes the bracelets CJ Free Jewelry.
And if bracelets aren't your thing, check out the variety of fun fundraising ideas at the shop:
Here's to the folks at Race to Erase MS, Center without Walls, Dr. Weiner, CJ Free Jewelry and everyone fighting to find a cure for MS.

Let's do this!


Tuesday

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

Sunday

#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.   

Friday

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