Feeling a little MS, but bring it on!

Dogs, good friends, a fire and some stunning wine make for a lovely afternoon and evening during the rainstorm.
Cowboy and Tucker
Some local flavor as well as something stunning from the cellar.
After an amazing salmon dinner with friends, we brought the horses in from the rain as the fields looked like they could flood a bit when high tide came in.
I was tired by the end of the day and settled Into an early evening. While I slept pretty well, I did awake around three am and took awhile to fall back to sleep. Wasn't anxious or anything just mind wandering.
For the first time since I've been in Oregon I could feel the MS in my legs. The fatigue and weakness creeping in. Oh crud! I haven't even fished or ridden yet. But that's OK. After a little stretching they seemed better. I got dressed and ready for our morning walk.
Today we walked with the ladies on Beaver Creek. The weather looks a bit threatening so I left my camera at home. I considered my rain pants. Hmmmm. Not sure why I only considered them. Would've come in handy.
The creek was swollen and the weather seemed ok. Then the skies opened up. And boy did I wish I had my rain pants.
A little flooding but there is blue sky! Looking forward to a ride tomorrow on the horses.
Let's do this!

Seeking Quiet to Restore Battery


When the body and mind are fatigued to the point of exhaustion, we seek solutions for our Multiple Sclerosis. Some are quick fixes, such as caffeine, sugar, alcohol, prescriptions such as provigil. But what we often need is solid down time. Time for our battery to restore and rejuvinate.

It amazes me, the power of shutting down one's sensors in order to feel stronger with MS. Sensory overload is tiring. It saps the energy from our batteries at a rapid rate. Sensory triggers such as light, sound, movement from people, crowds, events, television, can all effect our MS symptoms by putting our nerves on high alert. And our nerves are already on high alert.

Twenty four hours can make all the difference, even a twenty minute "time out" can help. But these breaks are not easy to find. With family, work, community, household demands, how do we fit in healing time for us?

I had a sad experience this weekend. And one I could have fixed, maybe. My dad and I had a couple of nights at home and mom was gone. We wanted to watch Dallas Buyers Club. Problem is he won't use a hearing aid and watches TV at volume 75. I am sensitive to noise. In addition our television room is not the best set up so you either have to sit pretty close to the tv to see it or far away which is hard on the MS vision. And by the end of the evening my senses are already tired so television is not a good option for me. It was tough. Decisions like that seem small but they're not. MS symptoms effect our lives everyday. I could have worn earplugs and sat in the room with him but I was already having an issue with my MS and didn't want to push it. Bottom lime, no Dallas a Buyers Club and no movie time with dad. We made up for it by spending time in the garden together. Where it was peaceful and quiet.

As the weekend continued So did my aversion to all things noisy. While dad was catching up on his tennis, something I usually enjoy, I found myself seeking the quiet of the garden where the air floated between blue skies and the colors of spring.

How do we find time to heal? We find the opportunity and make choices. Sometimes they are not easy choices but they are important choices. I knew I had an opportunity for quiet time last night. My last chance before my next MSontheRoad adventure which starts tomorrow. And I took it!

After brewing a pot of herbal pomegranate tea with some local lemon and honey, I stretched out on the sofa and fell into a book, Divergent, by Veronica Roth. Pure entertainment. Mindless yet curious, the perfect distraction.

The house, quiet. Through the windows the birds chirp and chatter about the garden. Encased by glass and redwood, I peer over the pages scanning the tops of a deodar and a palm tree through the filtered pink light-shades of the angels trumpet tree.
Angel's Trumpet
For hours I rest. Reading, sipping tea. Closing my eyes as needed. All day until my eyes chose to stay closed which was only about 9pm. After some water and an evening melatonin I slipped into a beautiful, restorative sleep. Waking at about 3-4am to relieve my bladder, sleep was easily found again. A much needed night of rest was had.

When I woke a couple of choices presented. Attend church, (which I often do but missed the last few weeks) or stay in the quiet zone (take advantage of this rare opportunity). I chose quiet zone. I can watch the sermon online which are helpful. But the quiet zone is a rarity. It's important that my battery be fully charged before tommorow. And honestly, it feels pretty darn good!

The day ahead is planned between a mix of quiet and productive time. A few more tasks to attend to before leaving town. Family will be returning so will the responsibilities: dinner, dishes, conversation. The goal will be to use the least amount of battery power while finishing things up. And to take as many "time outs" as possible

Time to do this!
Time to Rest. Relax. Restore.

Starting the day right with Mamaki Tea

Been awake since 3am then 5am. What is it with MS and sleep? I find it's difficult to get both the physical and mental energies dialed down at the same time. And this heat! It's not even that warm yet but my body is feeling it. Well, Ok, the internal heat is probably from the food choices I made last night.
I really wanted a nice lazy morning with a black cup of coffee and nice eggs and bacon. Unfortunately it's all too fatty, salty and warming for me right now. Bummer! But I must listen to my body or pay the price. I'm paying a bit for last night as we were at a Tournament of Roses happy hour fundraiser and I ate so poorly. All the appetizers were fried, processed, salty. I devoured some celery, my body crying out for cooling, clean eating food. But generally it was not a meal for MS and here I am, Saturday morning NoT drinking my black coffee. And with that whine I'll be cooling the body and nerves with Mamaki tea from Hawaii. Love love love this stuff and off to make a cup. Hold this thought.
Time to start over...
Good morning!
It feels so darn good to be writing again, the cathartic release rushing through the bloodstream. It's only been a couple of days but the real pleasure comes with being able to sit down, relax, and fall into ones writing, putting all other concerns aside. I have been too hurried lately. And that's not how I want to live my life. MS taught me that much. And I have already made major decisions that will positively change this in the coming months. As we know with MS it's essential to set priorities and boundaries and to stick with them. I recently excused myself from a couple of positions to lighten up my load and I am taking a much needed vacation at home and spending time with friends and family - the important things. AND, Being mindful and growing ever more aware.
And I am ever so mindful of the lovely Mamaki tea I am drinking. And aware as my body begins its shift from the MS blahs of this morning to a new level of clarity and inspiration. And check out the nutrient factor. Pretty cool: from www.miraclemamaki.com. I don't understand why crushed leaves would have no iron but whole or ground does. That will require some more investigation. In the meantime, it's interesting at least.
Do you know the Hawaiian Legend of Mamaki? Here's an earlier post about it on my blog: click here for GWMS and Mamaki Tea
Honestly after just one cup, I am feeling much better now than when I first woke up. In fact you can probably feel the energy of my writing change, from slow and sluggish to zippier with a touch of sunshine! I'm blaming the tea. Wow. OK. Sometimes it's easy to forget how little things, like a cup of Mamaki tea, can help tone the blood and mind pretty quickly.
I am also diffusing in my room. Ahhhhhh! And had several glasses of water. Feeling tons better than When I woke up.
Now of course I'm feeling much more excited and ready to hit the day. So much for my lazy day? Off to yoga, farmers market and anything else I can get into trouble with today.
We don't have tall buildings where I live but the weather isn't too bad today especially now that my internal heat just dropped by a few degrees.


Amazing Vegan Gluten free Cookies and the Benefits of Lime!

Made these Snow Turtles yesterday for our wellness fair. Huge success!
Simple, easy and delicious!
I used fresh lime juice and zest. Small bites packing lots of flavor!
Super easy!
Ingredients:
2 cups Pam's gluten free flour mix
1 cup solid coconut oil
1/2 cup powdered sugar and some for dusting cookies at end.
Juice of 1-2 limes
Zest of lime
1/2 tsp sea salt
MIX this all up with your very clean hands! Your natural body temp will warm up the coconut oil and you will get the hand spa treatment of a lifetime!
As you mix the cookies, add a little oil, drop by drop until you reach desired flavor. Anywhere from 4-12 has worked.
Roll dough into little balls and place on parchment paper on cookie sheet.
Bake at 350 for 15-20 mins, remove, dust with sugar whole warm. Remove from sheet to cool. Serve and enjoy!
Everyone asks for the recipe so bring it along!


Interested in learning more? Ask me about lime and other oils.
Join the conversation!
And #takethatMS

Mind Body Cleanse - my Journal

Hello all!
Welcome to my journal about my gentle cleanse as I reboot my mind body connection. I'm working with award-winning author and certified fitness trainer, Loa Blasucci, and her online mini system is just 5 days. I can do this!
Day 1:
9:13am
What a glorious morning. Had a restful night sleep and ready to start the cleanse and reboot my mind body.

Started off by not drinking the usual cup or two of coffee in the morning. This morning started with two glass of lemon water. I'm used to going back and forth from water, tea and coffee, so this first step is pretty easy for me. What's interesting is how my body was craving the ginger-lemon hot hottie and not the usual black sludge. Now don't get me wrong, I love a nice cup of coffee now and then, but going back to hot lemon water is fine by me.
Having several things on my to-do list today encouraged me to get started early. But, no slumping at the computer for the next four hours. Twenty minutes - get it done and get outside for a walk before it gets too warm. And crank it out I did.
Looking at the clock and realizing it's later than I would like I check the temperature outside. Beautiful and not too warm yet. A shade trek should be nice and doable. Not too hotside...yet.
Slow and lethargic I moved along the street, my 82 year old father by my side. He wasn't slow, I was. He was on his cool down after walking 1.5 miles at the gym. Good genes.
As we walk, my mind starts releasing toxic thoughts. I can feel them coming and then, just as quickly, they leave. No stressors. No anxiety. Just thoughts that come and then leave. I practice breathing deep and with intention. What do I want to release today? what negativities are holding me back in life? Ahhhh. My breathing gets deeper. I can do this!

In a gentle room I stretch. Nothing harsh or drastic, just a peaceful environment, and positive thought in my mind and heart. Breathing deep, I stretch a few minutes and then head back to the laptop.
After about a half hour on the laptop working away its time for my morning juice. I am so blessed to live in southern California and have this abundant produce everywhere around.
I'm off to cook, juice, chop, and prep for the coming week of cleansing.
---
Made plenty of reboot soup, salad, quinoa and fresh juices to nosh on during the day. Delish! Throughout the day my mind was continually trying to hang up on something. To get anxious and upset. To find that one thing to justify anger. But it wasn't there. I let it go. I kept letting it go. Every time something got me anxious and short of breathe I took a big deep inhale and let it go. And it worked. I felt free of angst and it felt amazing. I'm looking forward to continuing this freeing feeling with breathing and relaxing techniques as I cleanse months of crud out of my system.
Time for bed. Took a relaxing bath with bath salts.  Boy did I sleep well! At least the first part of evening til about three am, then I woke for a bit. But that's OK. I fell back to sleep a bit and woke for good about an hour ago.
Day 2:

Continuing my cleansing and growth through the second day. Starting the day off with a ginger lemon hot tottie and prepping for me gentle Loa Flow class that starts in an hour.
My body is warm tho. Very warm. I can feel the inflammation in my legs as the crud from my body is expelled. I can see negative thoughts leaving my body and mind. A reboot is happening and it feels so good!
I am aware that our bodies are amazing and they cleanse on their own. But sometimes modern day life makes a cleanse feel necessary.
Well, actually I never made the tottie and ended up just drinking filtered water. But that's what my body was asking for and I listened. That's one of my best learned lessons in life. Listening to the body. Really listening.
The amount of anger in me taking to the surface is surprising. I didn't realize how many negative things had accumulated. In my body. In my mind. But today, yesterday and this week, they are exiting this building!
Cleansing in some ways has become easy. Almost. But there are deeper parts about a cleanse that can get the mind going.
The light meals and juices are keeping me going all day. I made some lovely lemon ginger iced tea to sip on which became real refreshing on these warm summer days.
Day 3:
This was a good week to choose to cleanse. My schedule is light and easy with some work but not a lot of obligations.
Interesting as thoughts of work and projects would enter my mind, trying to raise my anxiety level, but my body just breathed deep and relaxed. No anxiety. Wow. The mind body cleanse is working!
Throughout the day I practice deep breathing and some gentle meditation. My intention is continually bringing my mind to the present as my anxiety levels release and disintegrate. Man this feels great.
Again this morning I go for the filtered water. Several glasses before I get out of bed. How refreshing!
My morning walk started with a spring in my step. Where did this spring come from? I'll take it that's for sure. Must be the lightness I'm feeling as the crud is leaving my body. I pick up the pace. It's supposed to be a gentle walk but my legs are wheeling spry. I take advantage of the feeling and let my legs go with it.
By the time I got home my whole body was aglow with sweat. My body felt strong light and hydrated. This is a feeling I like and will bring to intention throughout the rest of this cleanse.
Patience. I'm not known for it and struggle daily with finding it. Today was a good example of how I'm growing as a person through this reboot. I was at the market picking up six apples for my juices. I got in the wrong line. Almost a half hour later I am being waited on so I can pay my $1.68. The lady in front commented on how calm and happy I looked. Well, there was nothing I could do about it so I mentally succumbed and enjoyed a couple of magazines while waiting. Love this feeling! This is also an intention I'm carrying throughout the week and beyond. Succumb. Relax. Know the things we can change and the things we can't. Courage. It all helps.
Day 4:
Morning world!
What a great night sleep. While the last several nights brought sweats, pain, and inflammation, last night had just one wake up for a restroom break and some water then back to sleep. Yay team!
I'm off to make a hot lemon toddy! I'll be back. But for now I'm enjoying my cleanse. I have a gentle schedule today and will focus on my intentions.
Juicing through this day feels refreshing. Almost easy as if by following these simple instructions gives less to think about. The cravings are not really there. And an earlier time of healthier eating raises its beautiful head and reminds what eating could be like. Oh I love this reminder!
The negative thoughts still escape me. I love the feeling of them leaving my body as my lungs fill deep with air and comfort my tired, MS body and mind.
Bits of anger and impatience flit about reminding me of my weaknesses. I struggle for a moment but then the fleeting annoyances fly away. Fly away. Float away. Fall away. They do it all and my strength grows.
My intentions during this cleanse are to let go of what o can not control and to choose those elements I want in life. My life goals for this chapter are writing, artistry, and living each day best I can.
Day 5:
It's 2am and I can't sleep. Keep thinking of my beautiful aunt who is dying of brain cancer right now. Hospice is with her and she is joining her God as she leaves this world. Man, I love this lady and now she's gone. The tears flow freely. For my aunt. For her family. For my uncle. Life is amazing. So powerful yet so vulnerable. Life is the snowflake we are given. Unique. Delicate. Destructible.
How do we protect our snowflake yet let it shine like no other?
This day became a bit more challenging in ways and easier in others. After a morning stroll to get the blood flowing, and so,e time in the garden, I continued my juicing. Keeping my schedule light I used this time to relax, reflect and rejuvenate. Ahhhh. I needed this!
We had a big dinner to go to tonight so I glad I stared my cleanse a bit early. A local favorite prime rib spot is closing. I'm not a big prime rib fan and coming off the cleanse wanted to keep it light so went woth French oinion soup and spinach salad. I keep the bread and cheese to a minimum and are the broth and onions. Delish! And plenty for dinner.
I always have this great Sense of renewal after a cleanse. A true reboot. And this was no different. As the toxic crud left my body I was left with clear vision of what I choose in life and what I am letting go from my mind.
I could still feel a few rid bits of toxicity left in me. Negative thoughts, anger and impatience. As I breathe through each possible moment of anxiety I know that I have the tools to move forewar, successfully. And that's just what I'm going to do, use my tools: journaling, meditation, exploration, nature.
Join us as we move forward with what we choose and let go of what we want no more.
#takethatms #mspals














What does Orange mean to you?

***Here's a repost fom last fall. ***And then, a random orange balloon floats into my yard. I search about but from where it came I can not tell. Halloween is coming upon us. A party could be near but nothing in sight. I accept it as a message and am inspired to explore.Orange was a color I never wore nor associated with much until the past few years. Orange has become to mean new things other than Halloween and pumpkins. It is the color for multiple sclerosis. The MS Orange.

http://www.goodiesbygail.com/index.php?main_page=product_info&products_id=489

Embroidered patches available here

http://www.msstoreipp.org/imprinted-orange-balloons-pack-p-90.html


http://www.etsy.com/listing/125780055/multiple-sclerosis-nail-decals-ms-nail?ref=market

So what does the color orange stand for? A friend found this online and shared it with me:Orange

Orange combines the energy of red and the happiness of yellow. It is associated with joy, sunshine, and the tropics. Orange represents enthusiasm, fascination, happiness, creativity, determination, attraction, success, encouragement, and stimulation.

To the human eye, orange is a very hot color, so it gives the sensation of heat. Nevertheless, orange is not as aggressive as red. Orange increases oxygen supply to the brain, produces an invigorating effect, and stimulates mental activity. It is highly accepted among young people. As a citrus color, orange is associated with healthy food and stimulates appetite. Orange is the color of fall and harvest. In heraldry, orange is symbolic of strength and endurance.
From: Color-Wheel-Pro.com I don't know about you all but I'll take the color Orange all day long just for it's meaning. The one issue I have with orange is that it is heat provoking as a visual element. And we are already overheated! The nice thing is that blue is the opposite of orange on the color wheel and blue is very cooling. The two work well together.

 
I remember the use of orange in marketing/advertising. Its stimulates the appetite. Ever wonder why many foods out there are either orange or labeled in orange?

http://en.wikipedia.org/wiki/Doritos
http://www.collectingcandy.com/wordpress/?p=7187
http://mojosavings.com/free-kraft-mac-cheese/

I do know that it's the color of Hermes. Oh yeah, that orange I know!

How cool would it be for Hermes to create a custom scarf as a fundraiser? You know, something orange...

http://usa.hermes.com/woman/scarves/scarves-90/silk-twill/orange.html

I bet someone like Nancy Davis at EraseMs.org could pull this one off! She always has lots of cool ideas and fundraisers: Click on images to shop!

http://erasems.org
http://erasems.org

And then I just found this cooling scarf, also a Nancy Davis project. Many of us find cooling scarves quite helpful. This is a nice, fun orange one.

So what does orange mean to me? It means a lot more than it did even a few weeks ago. Most importantly it unites everyone with MS across the globe. No language barrier. Nothing. Orange is orange. Here's to orange! I'm off to carve a Jack O Lantern, eat some reeses, put on my orange tee shirt. I'm off to be Orange and "represent enthusiasm, fascination, happiness, creativity, determination, attraction, success, encouragement, and stimulation."Here's to saying #thatthatMS!

 

Kidney Yin?

I am asked almost daily, how are you surviving your MS?  Has it just gone into remission?  No.  It doesn't just go into remission.  At least not for me.   I have to take steps to put my MS into remission.  Lifestyle changes, diet changes, activity changes.

My survival with MS is significantly contributed to my nutritional intake.  As you know I studied holistic nutrition at Bauman College and became a certified nutrition educator.  This education was inspired by my three experiences with kidney yin deficiency.  I recommend looking it up and reading about it as I will be brief.  But the bottom-line, the symptoms of kidney yin deficiency are near identical to those of multiple sclerosis as well as other auto-immune diseases.

More of that to come.  What's important to me right now is to combine my holistic education with the Chinese based recommendations to create a macro-diet to rebuild my organs and blood.

So, Shen-Cleanse this Daddy-O:

1.  Shen Cleanse - teas or tonics.   I'm using teas this time.
2.  ShenTrition - alway
3.  Water or Plenty.  Have you investigated the living water yet?
4.  Yoga or the like - a nice yin yoga caught me in a loop for over two hours the other day.
5.  Outdoor health - gardening, hiking, walking.  Enjoy and bless our surroundings.
6.  Building diet - I need my calories right now. Healthy, digestible nutrients.  Here's what I'm talking about:
  • Fuji apples
  • Swiss chard
  • Gala apples
  • Turnip greens
  • Roasted turnips
  • Steamed green beans
  • Quinoa, onions and home made chicken stock
  • Black bean, corn, jicama jalepeno salsa
  • Silver salmon fresh caught by very cool father on recent fishing trip to Canada and perfectly marinated by awesome mother and myself with an herbal explosion from the yard overgrown with tarragon, marjoram and thyme.  Broiling worked just fine this cold fall day.
  • Radish, lime, cilantro salad
  • Strawberries
That is a pretty kidney yin friendly diet.  It can be better, more focused.  We'll add some pine nuts to the quinoa.  Keep with the greens.  Oh yeah and have some kidney eggs.  Egg whites, turnip greens, turmeric, bacon and salmon.   No the bacon has nothing kidney yin friendly about it but it makes me happy.

Turmeric on everything, baby, go for the turmeric!

More on this later.  Check out Paul Pritchford:  Healing with Whole Foods and Henry C. Lu's Chinese Natural Cures.  Many other great folks out there.  Also Dr. Stephen Gascoigne's The Chinese way to Health.

Off to ingest some medicine - food that is.

Memories as if yesterday, my travels with Kat:

666 miles
6,000 photographs
66 trips to dunkin' donuts....



The year, 2008.  Week long road trip from Lake Winnepesaukie, New Hamphsire to Kennebunkport, Maine.  Photographs, family, food, lobster, driving, donuts, coffee, entertainment, bourbon, lobster, family, photographs.  A lifetime of memories and a time to forget the MS.  Love when that happens - when life surrounds you to the point of forgetting you have MS, that intrigue and curiosity cover up the symptoms.  Photography does that for me.
 



 For a look at our road trip click here.

Accepting pain- our new normal

* SEPT 11 * Date Set for 8th Annual Women in Pain Conference!

What is pain and how do we continually accept our new normal?
What an amazing day with over 100 sisters in pain put on by the talented and beautiful Cynthia and John from Http://forgrace.org.
Held at the LEED certified building of the California Endowment Center in downtown Los Angeles, the conference was full of information and resources, tears and laughter.
If you've never been to a LEED certified building you are in for a treat!
The topic this year was "Accepting pain, our new normal". There were folks with every type of chronic pain producing ailment. Mine is MS but I also suffer from fibromyalgia and arthritis. The daily pain becomes bearable only because there is no other option. Or at least the other option, being dead, is not preferred.
Here I am on a panel of women in chronic pain. My main goal was to not fall off the chair with my wobbly MS. To watch the conference and panel click here.
Pain and suffering in women of all ages led way to Tears and laughter filling the room. Hearts were ripped open to their barest and shared with the world. In order the lighten up the. Mod and ourselves during the day, we played games!
The conference leaders created games for us to play and discussed the importance of playing in life. Here were just a few distractions to keep us engaged. We played with chopsticks and made googly eyes for starters...
But the real message was about pain and how we all take a Heroes Journey to learn to accept our new normals. The heroes journey, as presented by Jennifer Hughes, shared with us all the importance of the heroes cycle, of the need to overcome a weakness I order to survive as a hero.
Based on and Taken from Joseph Campbell's 'the hero with a thousand faces" sourced by Wikipedia.org.
"A hero ventures forth from the world of common day into a region of supernatural wonder: fabulous forces are there encountered and a decisive victory is won: the hero comes back from this mysterious adventure with the power to bestow boons on his fellow man.[3]"
So what does this look like? There are several images of the heroes journey. Here is one from Wikipedia that sums it up nicely.
It is this heroes journey that we all must take in order to accept our new normals every day. As Jennifer Hughes said in her talk, Do you Dare? Do you dare to take this journey and accept your new normal?
I have dared and I have succeeded! Here we go....time for some acceptance. Let's do this!

MS Nurses in US!

For awhile now I've been reading about the MS nurses available in the UK and other countries, someone we can call for support and questions about multiple sclerosis. Well, we now have them here! Thanks to Genzyme corporation, maker of Aubagio, we now have access to MS nurses via their new service, "MS One to One". Click to sign up.
I learned about this program on my recent adventures in Chicago where I worked as a lifestyle expert at a seminar for Aubagio. (More on this later.)
Today I received this email about the program:
"Hi GirlwithMS,


We’re always on the lookout for helpful services that could benefit members of MyMSTeam. We recently learned about MS One to One®–a free program from Genzyme that lets you speak directly to an MS nurse during regular MS One to One call center hours–Mon—Fri 8:30 am—8:00 pm ET. In addition, there are also on-call MS nurses 24 hours a day, every day.
You can register for MS One to One even if you’re not on a Genzyme treatment.
We receive financial compensation from Genzyme to let you know about this program. It’s one way we keep MyMSTeam free while letting our members know about useful services. "
Man, I sure could have used this program 14 years ago when I was first diagnosed. Especially with all those newly diagnosed questions. But I could use it today for much needed continual support. So, I signed up.
You can even have a nurse call you and check in on you. How cool is that?!
So many features to engage in...check it out