Wednesday

Living the Weekend Dream

Nothing like saying #takethatms by having an awesome weekend! 

Flyfishing. Flowers. Garden. Walk. Cooking in my new kitchen. Yep. Some of my favorite things. 




After fly fishing the LA River and enjoying the farmers market we made fresh clams in a pot of garlic, butter and white wine.  Delicious! 

First went to farmers market love our local agriculture. Here's a just a small sampling of our goods:  



Then perused the garden and reaped the bounty:  

The rain this year has brought beautiful roses.

 
  

Clams:

Butter. Garlic. White wine. Green onions. Steam and serve. Delicious!  Local asparagus doesn't hurt either. 

Then we found this monarch caterpillar on the milkweed.  

 

#takethatMS 


Trick:  save left over asparagus stems/tips in freezer. over course of springtime you will have enough to peel, cook and purreeinto a lovely soup!  

 

And don't forget to juice with will your fresh veggies!  My newest juice recipe: 

Orange
Apple
Cucumber
Greens
Carrot

Delicious and healthy! 

 

Want more inspiration?  Let's chat! 

#takethatms 

Thursday

How to Sleep with MS

Why can't we sleep?

There is no real reason other than MS as to why I have sleep issues but it's amazing how I can mess myself up!

Here I am in the beautiful Eastern Sierras listening to Bishop Creek as it riffles by below the cabin. My current view:


On vacation but with a few minor projects and tasks to tend. But not enough to keep me awake all morning. The first night I was exhausted and fell asleep at 9pm when my head hit the pillow, awaking at 4am, which did constitute seven hours of sleep. But I didn't want to be awake at 4am.
So last night I aimed to stay up later thinking I could get seven hours and wake at a reasonable time. Now as the day progressed, after some time in the warm Bishop sun, some fly fishing and some creative cooking, I thought to myself, you are at 8,500' altitude, "Go fill up your water glass". Yes, I thought this often, every time I opened another beer.

I even thought of the magnesium supplement, magneleveux, in my bag, as I opened another beer.

Daydreaming, sketching, visualizing, I had a fun night, as I opened another beer.

Exactly what NOT to do with MS!

Sure, I stayed up until midnight, then woke up at 4:38am. Bing! And I'm awake. The need to pee and the incessant leg spasticity kept me squirming all morning long. The 42 degrees winding through the window bringing with it the sound of the creek was my saving grace. Ugh. I know better. I did take 1/2 a klonopin and a melatonin before going to bed. And another half of klonopin in am when couldn't fall back to sleep.

Three glasses of water later, a banana, magnalevure and some Shen Trition, and this Girl with MS is finally feeling a little better.

What I could have done:

  • Enjoyed the great healthy dinner we had (micro greens, salmon, veggies)
  • Dry brushed my legs
  • Took a not to hot bath
  • Read a book
  • Wrote in blog
Etc....

Yes, these are all better choices then the one I made. So, live and learn. Let go and let God as they say.

This all inspired me to do some researching on sleep and MS. Here is some of what I found:

This is a great summary from WebMD of what can cause folks with MS to have restless sleep: Multiple Sclerosis and Sleep

Life aspects that can effect sleep patterns in those with MS:

  • Stress
  • Anxiety
  • Eating
  • Drinking
  • Nutritional health
  • Age
  • Physical activity
  • Mental activity
  • Spasticity
  • Depression
So, how do we deal with this sleep issue?

Time to change our habits!

Food suggestions:

Small bananas are good: (they still contain sugar so small is better before sleep)

"Combining the amino acid tryptophane with carbohydrates as well as calcium and magnesium can help your brain relax and your body nod off to sleep."

And the magic of oatmeal can make the difference of a more restful sleep pattern:

"Calcium has been proven to help the brain use and process tryptophan, while magensium, a natural sedative, acts as an "assistant" to calcium helping it to be absorbed into your system."



Check out more Foods to eat before bedtime from The Health Central Network

There are other things too. This is just a start!

There is Proof that sleep patterns affect MS!

If you've been having sleep issues and feeling more fatigued, there is proof that the two go hand in hand.


Check out this study: "Treatment of sleep disorders can improve fatigue and other clinical outcomes in MS."

“@MSBuzzNews: Multiple Sclerosis Research: Treatment of sleep problems reduces fatigue: Epub: Côté et al. Impact of sleep diso... http://t.co/f68LV6M8”

Ok kids. There is more to come on this and would like your thoughts but there's a high Sierra creek calling my name....





Wednesday

8 Easy Yoga Moves for MS - Do this in the morning and see what happens

Many of you know how important yoga has been for my success with MS.  It is something that was practiced before getting sick and continued through my illness.  My practice may not have been the most dedicated but it has always been there in some form or another.  The calmness it brings to my life, and the fitness and strength it provides is amazing.  Basically it feels like a massage from the inside out.

Here is a very EASY faux-ga Yoga routine for MS patients.  This simple routine is all done sitting down and lying down.  No need to stand.  It can even be done in a bathtub, sort of.  There are many resources for true Yoga but these are adjusted exercises that work for me.  
1.  Grateful Breathing:  Sit, cross legged, hands at chest in prayer position, welcome this time for your practice. Let go and breath deep for the next seven minutes.  Surround yourself with an invisible hug of positive energy.  Bring to mind gratitude toward something in your life.  Acknowledge and enjoy this feeling.  Either stay here or bring to mind another grateful moment.  Savor this moment and next seven minutes.  Bring to mind your breathing.  In through the nose, exhale through the mouth. Think positive in, negative out.  Breathe deep into your stomach on the inhale, feeling it expand like a balloon.  On the exhale squeeze out all the air by pressing your belly button back toward your spine.  Think of a tube of toothpaste with all the air being exhaled.  Breathe in deep again and exhale.  Make sure you are forward on your sits bone and use a blanket if needed.  The circle of energy through your body will be most open to change and healing in this position.  Continue this for 6 deep breaths.

2. Chest Opener:  On a big inhale, open hands and stretch elbows and shoulders back, squeezing shoulder blades together behind you. Exhale everything out and bring hands back to prayer position.  Repeat this for six deep breaths.  Do not push yourself too hard.  Be compassionate and listen to the body.  Go where it's comfortable.

3.  Spine Straightener:  As your are sitting, think about your alignment. Is our chin sticking out?  Or is an invisible thread pulling the crown of your head up toward the heavens and your sacrum is stretching toward the floor?  Be aware and adjust accordingly, using this visual to continually stretch yourself open.

4.  Neck and Shoulders:  Gently pull your right ear to your right shoulder, stretching the outer left side of your neck.  If you like, place your right hand over your head, finger just above the ear and carefully help you reach the stretch desired. Gently rotate your chin around in circles and find what feel good for you.  Make sure to stretch on both sides.   Now, shrug your shoulders up to the sky, rotate them back, down and forward, making large circles,  Complete a few in each direction.  Feel the openness in these areas and acknowledge the stagnant energy leaving your body and making room for freshness and rejuvenation.

5.  Reclining Cat:  While sitting on your bum with knees gently bent and feet on floor in front of you, place your hands gently on the outside of your knees.  On in inhale, stretch up as tall as you can while sitting with body close to knees., head up, back arched, eyes toward the heavens.  Big inhale.  Then exhale it all out with an open mouth and let your back roll backward toward the floor.  Big inhale and stretch up straight and tall by your knees.  Exhale and roll back, stretching all the little and large muscles.  While in the exhale position, gently rock side to side, massaging your sacrum.  Repeat this four more times for six deep breaths in all.

6.  Sage Twist:  While sitting on the floor, legs stretched out, we are going to take our right leg, knee bent, and scoot the heel as close to you as possible.  Sitting up tall, feel the stretch this provides.  Then if you want more, place that right foot on the outside of your left thigh.  Now, if it's available, take the left leg and bend it so that the left heel is near your right buttocks. This should be called the pretzel. Where ever your foot and legs are we will begin the twist. On in inhale stretch you right hand up tall and on the exhale, gently twist to the right and place right hand on floor behind you.  On the inhale stretch the body tall, on the exhale twist to the right a little bit more.   Take 4-6 deep breaths and then unfold.  Shake everything out and do the other side.


7.  Dying Insect:  roll on to your back and take all arms/legs/tails and shake them out above you.  Be a wiggly worm and take a couple of good breaths, exhaling any last negative energy in your body.

8.  Shavasana:  Time to relax. Lie down on your back on your mat.  Legs about 18" apart and hands about 8" away from sides of body.  Let everything sink to ground and relax.  Feel the body restoring.  Allow your body to fee this as safe place.  Stay in this place a couple of minutes - as long as you want.  Enjoy and appreciate.

9.  Thankful Breath:  Use your arms to raise from the ground and seat yourself with hands at prayer position. Breath deeply, acknowledging the time and energy put forth in this simple but effective and refreshing series.  Take a couple of deep, thankful breaths.


10.  I've got this!  You can end with a prayer or a namaste but I like to say to myself, "I've got this!".

Only do what feels good and don't push your body too hard.  No pushing through pain. We are gentle, compassionate toward our bodies.

This mini routine is a great way to get started and keep motivated.  Not too difficult but easy and gently on the MS.

#takethatMS 

Tuesday

Erasing MS the Nancy Davis Way!

Belle of the Ball

                 at least for one night.
MS Advocates: @Longhaulpaul & @thegirlwithMS
And boy was it worth it!

In just two weeks, Gala ticket in hand, it became game on for this girl with MS.  Complete with orange carpet, the 24th Annual Race to Erase Gala is an event not to be missed.  From Hollywood movie stars to MS Celebrities, the Beverly Hilton was packed with folks wanting to make a difference.  And make a difference they did!

MS Advocates: Caroline Craven & David Osmond
A variety of celebrities attended the Gala, including Marg Helgenberger, emcee Kathy Griffin, Medal of Honor awardee Jamie Lynn Sigler, David Osmond (living with MS), Kris Jenner, Paris Hilton and so many more wonderful supporters of the race.

The actual money raised for Nancy Davis' Center without Walls MS Research is not yet known, but one car went for $290,000 at the silent auction.  Wowza!

My escorts were amazing. As the MS took hold of my legs and made me weeble and wobble, out of the blue came an arm and a voice, "Here, walk with me."  Whew!  I thought for sure I'd topple over at any moment.  And who was this voice?  None other than MS advocate Paul Pelland, aka @longhaulpaul.  Well this was convenient.  Two MS advocates walking the orange carpet.  Woot woot!  Yes, we are in La La Land.

And then walks down David Osmond, who I got to meet on the phone during an interview a few months ago.  But we had not met in person. Finally!  And well worth the wait.  David who lives with MS does so much to help build awareness.




When Chicago is playing for a private party at the Beverly Hilton a good time can be expected.  Add the bonus of Quincy Jones, David Foster and Siedah Garrett.  It was the tops!



Not only does this Race to Erase MS raise awareness for MS but it raises a significant amount of funds for MS research. On Saturday, the day after the Gala, there is an MS Forum which has become one of my favorite events. Ever.

The MS community is family.  The hope and inspiration found at the MS Forum is contagious and is greatly appreciated by this MS patient.

A lot of great information was shared by the MS Forum.

The panel included medical specialists:  Peter Calabresi, M.D., Adam Kaplin, M.D., Ph.D, David Hafler, M.D., Daniel Pelletier, M.D., Nancy L. Sicotte, M.D., Emmanuelle L. Waubant, M.D., Ph.D., Howard Weiner, M.D., Vijayshree Yadav, M.D.

Those living with MS on the panel included Nancy Davis, David Osmond and Arnetta Hollis.

Claudia Hurry Hill, living with MS for over 32 years, was the moderator.  More on the forum to come.
____

The Gala was quite amazing. And prepping for it was even more entertaining. After arriving at the Beverly Hilton we ventured over to Neiman Marcus for their amazing popover, consommé and glass of rose before moving on to the Chanel counter to replace some make up. Natasha from Chanel worked her magic and provided my face with a much needed professional touch as well as replenished some product for later use.

In prepping for the Gala, much fun came from the dress shopping and the hunt for accessories.  Just the right look was of importance.  Orange is the color of MS but it's not necessarily the best color for me.  Also, when one is searching the internet for gowns and evening wear, there are a lot of choices.  Especially when one starts looking at designer and/or vintage gowns. But where was that one dress that would work the best?

Several friends and family in the industry suggested looking at Rent the Runway.  After a simple search, several orange gowns were found. And while my body is usually quite easy to fit, the thought of not being able to try it on was a concern.  So a dress that fit easy and was soft and fluid would be perfect.  And a dress in a softer shade of orange would be even better.  It did not take long for RTR to produce the perfect dress. Easy to wear, and comfortable!  Thank you RTR and Solani dresses for this optimum look.

Once the dress was chosen, time for the accessories.  OK, if the budget matched the choices, I could have spent $1000's of dollars getting ready for this gala.  Tinsel town was on my mind. But instead went for a slight bohemian feel, allowing for fun, costume jewelry.

A friend and I hit the stores. She's also my stylist and I highly recommend her.  Contact me and I'll connect you two.  We hit almost every TJ Maxx, Ross, Zara and H&M within a ten mile radius and found everything we needed and wanted.  We even found back-up options and a back up dress incase they are needed.  Whew.  This is coming together quickly and easily.

The Gala was extraordinaire!  Of course staying at the Beverly Hilton is a treat in itself.  Love this place.

After a lovely day, and an even lovelier evening of food, drink and good cheer, this Girl with MS is inspired and energized.  

I can not thank Nancy Davis enough for all she does to help everyone with MS.  The research provided by her fundraising is invaluable to our wellbeing.  

#takethatMS 












Tools for Living Better with MS

I was recently asked about the tools used to help my life with MS.  It made me pause to consider what were the items that truly created a better life for me.  Not just the normal things here and there but the items that really make a difference.  Here are the results:


1.  Reliable, bluetooth earbuds.  For some reason listening to music helps me stay focused and on point. It might be because the there can be quite a bit of useless noise in the house.  Or a wandering mind which can be brought into line with the beat of some good music.  My earbuds of choice are LG bluetooth.  Mine are a bit older but love them.  Used the corded ones for years but went through about a pair a month. The cords frazzled and fried.   As iPhones get larger my desire to carry it with me everywhere is not there and ability to leave it and move around the house with ease and music is a beautiful thing.  Since music comes from my phone it is interrupted when a call arrives, creating an effective work environment.  



2.  Hydroflask.  Keeping cool and hydrated is important for those with MS, especially as summer is soon upon us.  As a person who does not want to fill this world with too much plastic, my use of reusable water bottles has been going on for years.  Of all the water bottles used in the past, the Hydroflask is my favorite.  It keeps drinks cold, cold, and hot, hot.  I love the small size and carry it everywhere.  Wouldn't mind having a larger one but for now this one will do.  It's easy to take the lid on and off and also comes with a sipping lid for hot beverages and a spigot lid for quicker access.   



3.  Safe Walking Shoes.  Asics just happens to be the brand that has fit my feet for years, including my 10K and 1/2 marathon days.  But find the brand that fits you best!  Today I'm lucky to just walk, but a good pair of walking or running shoes that tie safely and have good traction is essential for folks with MS.   Being ambulatory can be challenging and in an effort to be as safe as possible I purchase a fresh pair of walking shoes each year.  



4.  Bandanas:  One of my favorite things ever. Can blow a nose or use as a way to cool the body down.  Get them wet and put one in the freezer.  On hot days, take it out and wrap around neck for a quick cool down.  Stays wet for quite awhile.  In an effort to reduce plastic, I use bandanas to wrap up my lunch and other essentials.  Easily washable and yes, can be dipped in cold water and used for instant cooling down. 


5.  Essential Oils.   Ahhhh.  So many reasons to love oils.  They smell good for one.  And that can put just about anyone into a better mood.   Bath salts before bedtime can help sleep.  Lavender oil on the bed sheets can help induce sleep.  Cedar wood in the diffuser can help one sleep.  A blend by doTerra called "Balance" seems to be custom made my for MS.  A little on the bottom of my feet just gives me the boost of confidence needed to get through the day.  Morning time - tired legs can feel refreshed with peppermint oil and aloe vera gel rubbed gently into the muscles and nerves.  Often it seems that the placebo effect can be quite effective.  Essential oils are difficult to test and substantiate.  But they're beautiful, smell great and make a positive difference in my life.  

6.  "Notes" software.  As an iPhone/Apple user all of my notes post across devices.  This is huge for my MS.  Everything to do is written down from one device or another and there, keeping my lists in line.  With horrible memory at times, lists are necessary and this is a tool used everyday.  Write everything down and it will be in one place.  Sometimes I use journals and other places to write things down but generally, kept in one place they are more effective.  
7. Handwritten notes of gratitude.  As a tool?  You bet.  There is something about the slowing down of handwriting, of the hand-eye coordination and the brain stimulation of penning a note to a friend.  Several times a week I will correspond to a friend or family across the country or down the street. Within each note is a moment of gratitude, a compliment or something positive.  It's easy and common to complain about what doesn't go right.  But what about what does go right?  Do we thank the hotel manager for the wonderful job they did do?  Call out an exceptional staff member by name because we took the time to slow down and pay attention.  Be present.  Be thankful.  Shower the world with love.

Click here for some beautiful designs.  


8.  Healing teas:   Enough with the pharmaceuticals and drugs.  Can we really achieve wellness with natural remedies?  You bet!  First off - do you want a wake-up, refreshening morning tea?  No caffeine but a boost of energy?  maybe peppermint and lemongrass.  Or...if you are feeling nervy and want a soothing tea, go for the chamomile or a soothing/night time tea.  Some special teas might be ayervedic "pitta" tea that reduces heat in the body.  Or a Chinese healing tea full of royal chrysanthemum and dandelion root.



9.  Port a Potty.  My favorite - Travel John.  this has saved me more than once.  Ever had to pee and just knew you would not make it to the restroom?  This little contraption has found it's way into all of my travel bags and large purses.  So easy, so lightweight.  So practical.  Just having one with me seems to give my bladder the confidence it needs to hold strong.  The day I didn't have one was when I peed all over my jeans.  Oops.  #lifewithMS



10.  Research!  Read and learn as much as possible.  We must become our own advocates and knowledge is power.   


Monday

Cheese Making Day and MS

Its the first of the new year and I've been busy making and enjoying cheese!   All kinds of cheese from Cashew/Vegan cheese to Queso Blanco, to homemade goat cheese and farmers cheese.   I love cheese and so curious about the process.  It was on my bucket list but is now checked off.  

Also, purchased were supplies to make more cheeses, like cheddar and mozzarella.   The learning curve is fun and fast.  Basically spent the week on Pinterest, at the market and then in front of the stove.   Next time more milk will be used so more cheese can be produced.  Since it was my first time, just a quart of milk was used for each of the three homemade recipes.  Two from cows milk and one from fresh raw Goats milk.  

To get me in the mood, some queso blanco with WSU Cougar Gold was in order.  This cheese was not homemade by me but made by students at Washington State University and is one of my absolute favorite.  So, melted that into my white sauce (made with rich homemade vegetable stock) and added a previously frozen, now roasted, jalapeno pepper.  With a bowl of chips and salsa I sat down to a day of football and pinterest.  


Queso Blanco made with WSU Cougar Gold Cheddar Cheese and Jalapenos



Had some raw cashews so soaked them up over night and processed them the next day with 1) garlic and olive oil and 2) Sriracha spiced.   I used this recipe.  Yum!  





Then came the real fun - the whole fresh milk cheese!  

REAL MILK CHEESE

First two are a farmers cheese made from cow's milk. Click here for recipe. The third one is goat cheese with lemon and thyme.   Delicious and so easy!  

After heating the milk, add the acid and let it curdle away.  Then separate the curdles from the whey, drain, press and voila - CHEESE!


Farmers Cheese (cow) with Blueberry Salt from Iceland

fresh rosemary and garlic
Bundle herbs in muslin, tie with string
use bundles to infuse milk while it's warming up on the stove
Farmers Cheese infused with Garlic and Rosemary
Fresh flowers and herbs sprinkles in muslin before draining.

Next made was a Chevre, or goat cheese.  Same process as above, using a simple acid (lemon juice) to curdle the milk.   I used this recipe but there are a lot out there.  I used fresh thyme and lemon juice at end to make a light, refreshing cheese.   Just this morning it was consumed with sour dough baguette and fresh black/raspberries from our local farmers market.  Delicious!  (consumed before a photo could be taken but darn it was good)






What a way to celebrate the Golden Globes and La La Land, a beautiful and inspirational movie.    Fresh homemade cheese (also had some fresh fig jam).  Feeling quite spoiled, a feeling to treasure on this gloomy, rainy Monday.  

At the end of the day one has lots of Whey left over.  In commercial cheese making this whey is considered toxic and buried in the ground.  But in home cheese making this whey is valuable!   Last night it was used to flavor the water in our version of Uncle Ben's rice.  Dang, it was good!

Next on the agenda is to try some Feta and Mozzarella.  Both of these require rennet, which was purchased on Amazon and ready to use.  (No one around town had it in store or would have purchased it locally).  

So, what does cheese making and MS have to do with each other?  Well, anytime one can check something off their bucket list is a good thing, and since we never know how fast/hard/where the MS will hit next we need to take advantage of our life possibilities as best we can.  

My weekly talks at #TakethatMS online support group are focusing on this very topic, how to take advantage of life's possibilities.  Did you see La La Land?   I know, I know, so Hollywood.  But heck, I'm a born and bred So Cal Hollywood Girl and this movie quite resonated with me.  The line, where she talks about one's potential.  That's it; the key to life.  Maximizing our potential.  

Now, throw in a disability like MS and this potential seems to go out the door.  But wait, let's look at this potential again.  Revise the picture you see of yourself in the coming year, or five years.  How do you want people to remember you by?  to think of you as?  How do YOU want to feel about yourself as life ends?  Every year and each decade my bucket list changes based on MS and my life.  

Sometimes we just need to remove an item from our list, knowing that it most likely will not happen in our lifetime.  Realizing this is painful and sad as it reminds us of the disabling affects of multiple sclerosis, something we did not choose to get.  

But when this happens, when we need to remove something from our life wish list, then immediately replace it with something else.  Something a bit more attainable.  Not able to downhill ski or snowboard anymore?  What about snow shoeing if able to walk?   The point here is to look for options to allow you to enjoy your life more.  Some of my bucket list items are from "when I get really old, I'll play golf".  Well, that golfing option is looking pretty good right now and one that may not be an option for me for long.   

Maybe the new item is smaller, less demanding.  Totally different.  It doesn't matter.  Just find something new that inspires you and go for it.  Today, mine was cheese making.   And now I'm looking forward to learning more about this process and trying to types.  And then getting to eat it all

#takethatMS