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

Time to Erase MS!

DATE SET: Race to Erase MS: MAY 5, 2017

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.

Click here to reach my personal fundraising page and to donate!

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.

Continued....

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!

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3-Day ReBoot! Cleanse and Restore for a New You!

*NEW* 3-Day MS REBOOT

Do you love Spring time? Time to Cleanse and Restore!

Join us for the Group ReBoot - August 1,2,3
or Choose 3 Days of your choice!

3-day Guided Cleanse & ReBoot

$25

Join me and find a healthier level of living. DM me for more info! 818-585-5660

We will look at nutrition, exercise, meditation and yoga over 3-days.

Includes:

(2) 15-minute mini Coaching Sessions

1-hour life coaching session (via phone or Skype)

3-Day guided diet review/cleanse and reBoot

Meditations

EasyYoga Routine

Springtime is renewal. As the plants and flowers use this time to bud out, I also use it to recharge and break out of the winter duldrums. I love taking on a new challenge this time of year and focusing on cleansing my body is my goal in 2017. There is a real feeling of accomplishment when you honor your body with compassion.

It is the perfect time to renew your health, and I have the perfect tools to get the job done. While some of us started our detox a couple weeks ago for MSreboot Camp, it's never too late! And we're kicking some MSbootie. Make goals, keep a journal and let's ReBoot this MS out the door!

only $25 for this package worth $175

Space Limited!

Soothing MS with Cooking and Nutritious Food: Roasted Veggie Chowder

Probably one of the best lessons learned so far with my MS:

"Become more aware of what's really worth your energy."

Couple things worth my energy: The nature around me and cooking for my family.

Here is the last of the roses for this southern California girl! The bushes are all pruned up but this beauty, cut probably a week ago, just keeps amazing me. Often it's the little things that are most important to us. Have you noticed something lately that has inspired you?

Farmers market is another inspiration. The bounty of our local agriculture is amazing! After several years of dry winters and a continued drought here in Southern California, we are finally getting some rain. And boy are we getting it! And this cooler, "stay indoors weather", has been encouraging my cooking.

Today there were plenty of vegetables that needed using: potatoes, brussel sprouts, two carrots, red and green bell pepper and an onion. After rinsing and drying the veggies, the potatoes were cut in large cubes and brussel sprouts were cut in half. Drizzled with olive oil, fresh rosemary, sliced garlic and sprinkled with salt, they were placed on a cookie tray that had been sitting in a 400 degree oven and until nice and hot. Roasted for about 15 minutes then added the carrots (they were small) and the peppers. Roasted another 15 minutes.

In the meantime, saute one diced onion and 4 tablespoons butter in heavy cast iron pot or some good soup pot. Saute until nice and soft. I added some dried thyme at this point to add some depth to the flavors. Possibly wine or sherry could be fun at this point.

When the veggies are done, drop into pot of onion and butter. Stir and combine. Add the chicken or veggie stock. About 4 Cups depending on amount of veggies and desire of thickness. Then add 1/2 Cup 1/2 and 1/2. Or cream, or something to add a nice creamy texture to the soup. Or don't and just use homemade broth. That's up to you!

I added a partial bag of frozen corn and got everything nice and hot. Then added a handful of rough chopped fresh flat leaf parsley for good color and freshness. Of course, it is a chowder, so ground some good old black pepper on top. In fact, I might go have a bowl right now. Dang, this is one tasty soup!

ROASTED VEGGIE CHOWDER

INGREDIENTS:

Mixed veggies for roasting: (Anything found in the pantry or refrigerator should work!)

1 lb yukon gold potato
1 lb brussel sprouts
1 onion
2 carrots
1 green bell pepper
1 red bell pepper
1 cup frozen corn
4 tbls butter (sweet - not salted)
4 Cups chicken or vegetable broth

fresh rosemary or other herbs from garden
fresh parsley for garnish
Salt and pepper

Place cookie/roasting tray in oven and Turn on to 400F.

1. Dice/Cube/Cut in half/Slice veggies to desired size.
2. Drizzle with olive oil, salt and fresh rosemary.
3. Carefully place potatoes and sprouts on hot pan and roast for 15 minutes.
4. Add carrots and peppers to hot pan and roast another 15 minutes or until done.
5. Saute onions butter over medium heat, until soft and translucent.
6. Add roasted vegetables, blend with onion.
7. Add broth and bring to boil.
8. And add 1/2 and 1/2 and reduce to simmer.
9. Add fresh green rough chopped parsley for garnish.
10. Add fresh ground black pepper and serve!

And because soup just is not enough for this family, we added mini Salmon Salad Sliders. Yum!

SALMON SALAD SLIDERS

1 can Salmon
1-2 tbls mayonnaise
1 tbls pesto (premade)
add basil or spinach leaf for color

King's Hawaiian Rolls - because I had some left over. Toast or bread or lettuce leaves work great too!

This is a super easy recipe. Of course you can make these as difficult and gourmet as possible. But for me, when my MS acts up, I want to keep it simple.

Gotta love when carrots love each other!

Juicing and Chia Pudding for our Health

2 Ways to Eat for Wellness

After a few crazy months of eating anything and everything I'm taking a couple weeks to turn it all around.

First of all let's alkalize this body and get this gut working like a Porsche!

Spent the morning Juicing and making chia pudding which are two of my faves.

Time to put my gut into gear.

#takethatms

I made about seven jars of juice, some with greens and carrots, some with beets and lemons.

Morning Juice:

1/2 beet

1/2 lemon

1/2 cucumber

1/4 small watermelon

1 apple

Cooling Off Juice:

1 carrot

1 apple

1/2 cucumber

1 handful mung bean sprouts

2 celery

1/2 lemon

Booster juice:

2 carrots

1/2 orange

1 small piece ginger

2 celery

Handful parsley

1/2 cucumber

Best to make juice fresh every time. But this can be difficult and time consuming. I will sometimes make a few bottles at once and drink them within 24-36 hours.

Chia pudding and hemp milk for those vitamin Ds.

Chia Pudding

1/2 C hemp milk

2 tablespoons chia seeds

Place in mason jar or any container, shake and chill for a few hours or overnight.

Toppings:

Maple syrup

Honey

Nuts

Fruit

Be creative and enjoy the goodness!

Making Friends with My MS

Needed this today!

I spend enough energy being angry at my MS. And what's the point? It just tires me out and uses what little energy I have. I am always looking for those times when I exert too much of my precious energy and see how I can do things differently to preserve this special commodity. To me this is the very tool that helps me manage my MS.
When I received my cool little bracelet from CJFreely yesterday as part of Nancy Davis' RacetoEraceMS program, well, I thought, this is just like a friendship bracelet. And bam, it hit me, time to truly make friends with my MS!

While I'm Not a hand model by any means, I love looking down at this little reminder that I can be friends with my MS. But how?

How do I do this? How do I make friends with a disease that ravishes my body on a daily basis and tries as it it may to dictate my life? This is a tough one.
First off, I'm making a list of things I'm grateful and thankful for:

Learning to ask for help
Learning to slow down and smell the roses
Leaving the corporate world for the creative world
Getting to know my parents as peers and friends by living with them
Learning to ask for help. I could mention this one many times!
Learning to live off a very, very small income.
Learning to be poor with money, rich with life.
Learning who my true friends are and will be.
Learning what my limitations are and realizing they aren't that bad
Meeting lots of cool new people and friends around the world with MS
Knowing that my blog and info has helped at least one person deal better with this disease.
Learning again what is important in life. Waking. Breathing. Living.
Friends and family, couldn't do this without them.
Limitations and boundaries. Learning how to make those more definite.
Turning from a power player to a finesse player.
Learning to listen to my body and respond accordingly

I know there's more but this is a good start this Thursday morning.
I think its good to also acknowledge what I don't like about MS in order to get the full picture. This will help me decide where I can improve in managing my MS.

Unreliable. MS randomness makes it difficult to stick to plans.
Each day is different. Pain, balance, cognitive, tremors, incontinence, vision, fatigue
Inability to drive beyond local streets
Panic attacks for no reason.
Fatigue fatigue fatigue.
Tired eyes, inability to read at times.
Dry heaving, spasms makes it difficult to eat or have appetite.
Muscle spasms at night make it difficult to sleep. Restless leg syndrome bums.
Tremors tremors tremors. Hands and neck
Clumsiness. Dropping things right and left.
Loosing balance. Breaking toes.
Folks not understanding the illness
Randomness of it all
Emotional rollercoaster

Things I've learned to say to myself:

#itisWhatitis

#takeThatMS

#NoTwotheSame

Things that help me befriend my illness:

MS community on Twitter @thegirlwithms
Family
Friends
Writing and the arts. The cathartic process.
Becoming better friends with myself. This is a tough one. I'm not easy on myself and learning compassion for my illness and health is key.
Finding a great neurologist to travel with on this journey. I still need one of these!
Being open and honest about the disease. Building awareness and letting folks know that there are ways to manage MS beyond traditional western medicine.
Research! There is so much new information about MS on social media and in books.
Become my own health advocate. No one is going to do it for me!
My Christian community at church.
Learning that it's OK to take naps and be a couch potato at times. (This is a tough one for me!)

Bottom line, in spite of MS:

I'm living a different life then expected yet a beautiful life with many opportunities and options.
Keep all doors open with this disease. You may have always defined yourself as a "strong corporate, get things done type VP" and then bam, the rug is ripped out from under you.
Time to redefine ourselves. That's what I did. Imagined and visualized all the things I loved in life since childhood. Which of things can I do? What have I always wanted to do and what is still possible?
Fortunately I hade a very full life prior to MS: successful career, horse trainer, river guide, adventure athlete, runner, mt biker, ww kayaker, rock climber and even jumped out of planes.

But that surely doesn't mean I'm done living!

I'm finding out what I can do and what I can't. I think this is a continual thought process with this disease. And while some days I can do some things there are days I can't even get out of bed.
Take advantage of every second and every minute! Even if we are bed ridden, cane assisted, or walking three miles, every part of your life can change with MS.

Get ready to go with the flow and let's do this!

Time to become friends with our MS!

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Tips for Thriving with MS - #TakethatMS

Ever get angry with your MS? Life can really suck at times. Sometimes rolling along is so easy and then other times, wham, it slams you to the floor and getting out of bed can be the accomplishment of the year. Anger begets stress begets exacerbations. Throughout the past fifteen years of living with multiple sclerosis there have been many lessons learned.

From anger management to reducing stress and friction in life, my goal is to share as many of these tips with you as possible. And maybe not for too many years because stopping MS may happen in our lifetime. So many advancements have been made these past six years it's amazing.

In the meantime, while we wait for more and better treatments here are some natural ways to handle life with MS:

:Anger Management:

Why me? 3 Steps to Managing Your Multiple Sclerosis Anger

:Reduce Stress:

5 Stress-Busting Exercises For Beyond the Door

:Life Coaching Webinars - FREE:

Get started with some basics: Let yourself be Safe, Happy, Healthy and at Peace this year.

:Life Skills:

Webisode #3: Managing feelings of being overwhelmed.

Webisode 5: Asking the people around me for help and offering help as a care partner.

If you are facing depression which is common with MS patients, please seek the help of your doctor or other medical professional. Depression is very serious and should not be taken lightly. MS can really mess with our emotions.

These tips and tricks are designed to help us all live a little better with multiple sclerosis.

What tips and tools do you like to use to manage your life with MS?

#takethatMS

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!

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...

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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.