Wednesday

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 Serenity essential oil blend 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.


Sunday

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

Wednesday

Obsessive Gazpacho

I created this recipe as Farmgirl - during my FarmosaFarms.org days.     Click here for other recipes I created as Farmgirl

Obsessive Gazpacho



  • Prep Time: 30 mins
  • Total Time: 30 mins
  • Servings: 10

About This Recipe

"Cooling and nutritious. Make it for snacks on the go!"

Ingredients 

    • 6 ripe tomatoes, chopped
    • 1 purple onion, finely chopped
    • 1 cucumber, chopped
    • 1 red sweet bell pepper, seeded and chopped ( or green)
    • 2 stalks celery, chopped
    • 2 tablespoons chopped fresh parsley
    • 2 tablespoons chopped fresh chives
    • 1/4 cup chopped fresh cilantro
    • 1 garlic clove, minced
    • 1/4 cup red wine vinegar
    • 1/4 cup olive oil
    • 2 tablespoons fresh lemon juice
    • 2 teaspoons sugar
    • 1/2 teaspoon salt
    • 1/2 teaspoon fresh ground pepper
    • 1 jalapeno, seeded and chopped
    • 1 teaspoon Worcestershire sauce
    • 4 cups tomato juice (low sodium) or 4 cups tomato sauce ( low sodium)

Directions

  1. Combine all ingredients.
  2. Blend slightly, to desired consistency.
  3. Place in non-metal, non-reactive storage container, cover tightly and refrigerate overnight, allowing flavors to blend.
    LOVE LOVE LOVE this soup!   

Tuesday

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.

Monday

Accepting pain- our new normal

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

Click here to learn more - some free passes are available!


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!

 

Tuesday

Escaping the "Red Zone" of MS

Sometimes this is not very easy to do, keeping your clothes on, with MS. Summer months are brutal and just hiding out by the AC doesn't cut it for most folks. Planning ahead with cooling devices is best but sometimes we simply wake up in the "red zone", inflamed and sensitive, a red flag for a relapse.

When I'm in the Red Zone the first thing done is to rate the shade of red. Am I getting a little pink or have I fried myself?

And then ask myself why?

  • What did I do yesterday?
  • What did I eat?
  • What was the temperature?
  • How did I sleep?
  • What's on my agenda today?

What can I do now to move into the "Blue Zone"?


Hanging by water is a great option. Pools, rivers, lakes, oceans provide instant relief from warmer temperatures. But not all of us have this opportunity nor can we often remove our clothes to cool off so improvise we must.
Quick tips:
  • Cool shower. Even Luke warm is fine. Just hop in the shower for instant cool down.
  • Wet bandanna around cooling points: neck, wrists, ankles
  • Ice water, drink it, pour it on your head, pour it down your shirt!
  • Wet shirt, cool off body. Huge help in the Sahara when my guides put my shirt in the crocodile infested waters so I could cool off. They don't have ice on safari in Tanzania, FYI.
  • Juice it! With Cooling, anti inflammatory and detoxing foods such as cucumber, apple, pineapple, etc.
  • Visualize the Blue Zone:
Ahhhhh....feeling cooler already. Now, not to mess it up.
 
That means to watch diet and activities all day:
  • Cooling foods
  • Activities by AC
  • Water, hydration
  • Reduce stress and get those items checked off to-do list
  • Have fun brainstorming on some new projects
  • Find balance
  • Be at peace
  • Mellow in the "Green Zone"
So, How do you deal when you're in the Red Zone?

 

Multiple Sclerosis in the News

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