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a New Year to Behold

Happy New Year!   (well, almost)

2017 was amazing in so many ways but after these holidays I definitely need to get back on track.  Late nights, rich food, more drinks and body began to rebel.   It just about quit on me yesterday.  Maybe it did.

Two pm, and helping mom with yet another holiday function and finally found myself crashed out on the bed.  Been a beautiful but long holiday!

We kicked off December going to Nashville, Tennessee to learn more about iQuity's blood test to help diagnose multiple sclerosis.  Click here for my article about this blood test called isolateMS.  This is definitely company to keep an eye on in the future.  The blood test is already helping some patients with their diagnoses.  It could be an effective alternative to MRI's and anyone who's had an MRI knows how uncomfortable it can be.

iQuity Advisory Board

iQuity Advisory Board

Caroline Craven (
Kathy Reagan Young (
Cat Stappas (
Beth Prystowsky (
Stephanie Buxhoeveden (
Matt Cavallo (
Dan and Jennifer Digmann (
Laura Kolaczkowski (

Kim Standard, Caroline Craven, Jennifer Digmann
There were ten of us MS bloggers in Nashville and it was awesome to connect and meet in person! We ended up at the Grand Ol' Opry after a good day of brainstorming, sharing and learning.

The next week found us in Boston, Massachusetts.  This trip we worked with EMD Serono and their activities helping MS patients live better.   It snowed on us and we got to experience an almost white Christmas!
Enjoying Boston with some of the EMD Serono MS team!
It's really amazing and wonderful to feel the connection between medicine and quality of life.  These two companies understand that this is important.  I appreciate this greatly.

Caroline Craven and Carolyn Kaufman - from Without the Weight.  
So much appreciation and gratitude as 2017 comes to an end.   GWMS was active in many great programs this past year to help others with MS live a better life.  AND I met the man of my life who has been the most wonderful support system imagined.   This is good for Girl with MS.  Oh so very good for GWMS.

As the holidays come to an end, my body is ready for cleansing and reflection.  For movement and for routine.  The rich foods and excess alcohol was felt in every muscle and nerve.  I also indulged in some cigarettes which I know are terrible for us - but tasted good at the time.  And the coffee/caffeine consumption was nearing epic proportions.

But the binge/festivities are over and easily my body, mind and spirit slide back into a healthy routine.  Today I'm sipping royal chrysanthemum tea.  Yesterday my cup was full of "pitta" tea to help reduce heat and inflammation, followed by some fruity Acai berry tea full of anti-oxidants.  And it has the most beautiful bright blue flowers in it.  Violet blue.

Today I am working on an exciting project for Self Care Catalysts.  This is another company that is making a difference in the lives of MS patients.  They have launched an app called My Health Storylines in addition to starting the Self Care Movement:  #selfcaremvmt

They understand that patients want to take control over their wellness and they are doing something about it!

Their homepage says it all:

Mabel and Caroline Craven,



It's that whole, "Begins with Me" that knocks it out of the park.  So true.  We are only as good as our actions.

As many of you know, my whole gig is about creating our own wellness, about self-care.  Now this does not mean you abandon all medicines or disease treatments.  Self-care is about the big picture.  The whole enchilada.   The wholistic approach.  this includes nutrition, exercise, mindfulness, medicines, and all things consumed and ingested as healing treatments.

I'm working on some challenges for the coming year.  Weekly resolutions that can be done in five days to help guide us into a healthier 2018...

Watch this spot - more to come.

and #takeTHATms!

Surviving Christmas with MS

I found this from 2013 and it’s reminding me of some very important points in life. 

What a wonderful week of family, friends and the foes of MS. Yes, wonderful even with the nagging MS stuff going on: The emotional roller coaster, the fatigue, the foggy brain. Not to mention clumsy foot, balance issues leading to a broken toe. But despite all the MS foes, this was a grand Holiday.
While I love Santa and the stocking he provides, it's often the intangible gifts that mean so much during the holidays. The gift of life, of friends, of family. Even if our family is just one other person, or that most of our friends are acquaintances on Twitter, we do have a family.
My morning chat from Christmas Morning:
Yesterday included some great food with me grilling a wonderful piece of beef tenderloin from Sprouts market. Love their meat! Grandma made all the fixings and family helped with the dishes. Girl with MS had to take several rests during the day. By now my young nephews understand when "Auntie Nonnie" needs an MS break.
This is a family full of converse shoes, time outside and basketball. Go Lakers! Go Clippers!

Gifts came in all forms. Here is the Day of the dead doggie in honor of all of our lost hounds.
We did it! The emotional roller coaster has subdued. Gifts exchanged. Tears of joy and love shared. Frustrations as well, but all in all a Cherry Merry Christmas.

Join an MS study from the comfort of home. Receive $50 for your time.

Are you interested in helping advance research for MS but don’t know where to start? You’re not alone. Taking part in a research study for MS can seem overwhelming, but it doesn’t have to be.

A new at-home study called EMPOWER (Evaluating Multiple Sclerosis Patients ShOWing A GEnomic Signature of Therapy Response) is seeking volunteers with MS nationwide to better understand how MS affects the body. The goal of the study is to develop a blood test to help monitor disease activity and treatment response for people diagnosed with MS. The study is being conducted by DxTerity, a genomics company developing tests to better manage autoimmune diseases.

If you’re 18 years of age or older and have been diagnosed with MS (any type), you qualify.

Why Should I Take Part?
EMPOWER is an at-home study that can be completed in your free time. All you need to do is sign up online and a study kit will be mailed to your home.

What’s Next?
Follow the instructions in the fingerstick blood collection kit to collect a few drops of your blood (much like at-home glucose monitoring). Mail your sample to the research lab using the prepaid envelope.

When you’re done, log in to the secure study portal and complete a short survey online. You will be compensated $50 for your complete study participation, which you can keep or tell DxTerity donate to an MS charity of your choice. That’s it!

Ready to make a difference in MS research? I know I am. Click here to get started.

Living with MS. A quick video

Living with MS can be a challenge. Here is a quick video of Girl with MS talking about her experience.

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.


Massage Benefits MS

Many folks have asked about the benefits of massage for folks with MS.
Bottom line, I prefer spending my money and health on massage than on many of the Western "medicines" created for MS. Which don't seem to be true medicine. They are drugs that cover up the symptoms. So how do we reduce the symptoms and treat MS proactively?

Among other ways to live healthy including nutrition, exercise, and spiritual well being, massage is a great physical way to remove toxins from our bodies. Whatever caused our MS or whatever exacerbates it, the one thing we can do is keep our body as clean as possible.
Now this is not always easy. Trust me! Coffee, tobacco, alcohol, artificial sweeteners, fake foods, artificial or fake anything can send MS into a tizzy.
The goal always is to reduce these toxins and increase MS beneficial foods, such as cooling mung beans and detoxing apples.
One thing we can do to remove toxins is to have a massage. And what a treat it is!
Massage seems to help in several areas:
  • Spasticity
  • Pain
  • Fatigue
  • Poor circulation
  • Mental wellness...ahhhh....
The National MS Society has good information about massage and bodywork therapies click here. Here is the NMSS summary of how massage effects (or not) the course of MS.

"Massage and the underlying disease of MS

While massage can be helpful in relieving stress and inducing relaxation, it has no effect on the course of MS. A 1998 study investigated the effect of massage in people with MS on:
  • relief of anxiety and depression
  • improvement in mood, self-esteem and body image
  • increased ambulation and improved physical and social functioning.
The study used self-reports by the participants and found that, at the end of a five-week period, physical and social activity had improved in the people receiving massage. Those in the massage group also reported a decrease in depression. There was, however, no improvement in grip strength and only marginal improvement in ambulation."
So, keep up the massage and add some strength training or yoga to keep those muscles strong!
Lance Armstrong's talks about the benefits of massage on pain in MS sufferers. By reducing pain, massage can help folks become more mobile. Less pain = more movement. Folks withnMS don't want to be in bed. Sometimes we don't have much choice.Massage & Bodyworks Magazine has done their research with regards to MS and massage presenting us with one of the most comprehensive yet simple to digest articles summarizing MS, the disease, along with the benefits of massage. Click here for more. "For the MS patient, a well-being approach for addressing body, mind, and spirit is essential to combating the effects of the disease. Helpful self-care can include a daily routine of tai chi or yoga, meditation, and attention to diet." They get it. They get the disease and seem to understand what we need to feel better. Many therapists, especially in the Northwest where prevalence is higher, jphave numerous MS clients. Crowell is one of them:"With her extensive MS experience, Crowell says she has learned the importance of balance between releasing spasticity and maintaining enough tone for the client to function. "If you relax someone with MS too much, they can’t walk when they get off the table. They use the spasticity to keep them erect." By implementing a reflex response technique, she reduces spasms without decreasing tone. The client is better able to maintain standing balance, and for those who are not ambulatory, core stability is increased so they can sit better. "One of the things people tend to lose is control. You are working with refining the amount of contraction they use with a given movement." Wow! This is some great stuff. A must read for all with multiple sclerosis. Click here for full articleHere is a summary of MS symptoms. All can be helped with the right massage! The American Academy of Neurology talks about the most common massage techniques used for reducing pain in MS patients:Craniosacral massage: Light pressure is applied to the head, neck, and spine to ease tension and compression. This type of massage is not appropriate for people with conditions that could be affected by intracranial pressure changes, such as acute aneurysm, cerebral hemorrhage, or hydrocephaly.Lymphatic massage: Light, rhythmic strokes are used to improve the flow of lymph (a colorless fluid that helps fight infection and disease) and get rid of waste throughout the body. Lymphatic massage is often used to reduce post-surgical swelling and to help heal sports-related injuries.Myofascial release: Pressure and body positioning are used to loosen and stretch the muscles, fascia (connective tissue), and related structures. Both physical therapists and massage therapists who are appropriately trained use this technique.Reflexology: Specialized thumb and finger techniques are applied to reflex points in the hands and/or feet.Shiatsu: Gentle finger and hand pressure are applied to specific points on the body to relieve pain.Swedish massage: A variety of strokes and light-pressure techniques are used to enhance blood flow, remove waste products from tissues, stretch ligaments and tendons, and ease physical and emotional tension.Trigger point massage: Pressure is applied to trigger points (tender areas where the muscles have been damaged or where tension accumulates) to alleviate muscle spasms and pain.One of my favorites? Lymphatic can feel the toxins being squeegeed out of you! But I love them all. In fact, I'm off to get one now! What's your experience? Pro massage or toss it?

NEW Radio Show - Girl with MS launches weekly radio show!

Join me every Sunday, 5:30PST / 8:30ESt on MS and ME radio, part of the MS Global Support Network.  

Archived radio shows found by clicking here.

Want to be part of the show?  

 Comment below - we would love to share your MS story on Girl with MS!   

MS is like an iPhone Battery...and I need a recharge!

Keeping ones battery charged with MS can be as tricky as keeping an iPhone 5 going all day. Remembering to turn off location services and programs running in the background is vital to keep an iPhone chugging along. But how do we do this with MS?How do we turn off those programs running in the background. That constant chatter of energy being wasted. Do we meditate? Medicate? Or both. And when it comes to our location services, how do we unplug ourselves from those wanting our energy? Do we withdraw? Or de we become strong and set boundaries?

So much in life has changed with my MS. Every decision, every thought is focused on how it will effect my mind, body and soul. While this is a good thing in the long run sometimes one really just wants to kick down a loaded cappuccino, go for a hike, enjoy a pipe on a cold and rainy day while reading Harrison, drink a glass of wine or two with good friends, tie some flies, hop in the car and drive...just drive. A certain since of freedom is stripped when a disabling disease like MS hits. Freedom in so many ways. Once a road warrior. I am now a shuttling sissy.

It started with a panic attack on the LA freeway amongst heavy traffic. No escape. Panic stricken, batteries faded fast. Eyesight diminished rapidly. Then the convulsions and dry heaving that would randomly hit never made it safe. Let cramps, not good for driving either. While these issues don't happen all the time, they've occurred enough for me not to trust my body, understanding now that my batteries could crash at anytime. Knowing this makes me feel vulnerable and vulnerability creates fear. Too much fear can strip us of our lives.

To a point we can quick charge our batteries: caffeine, tobacco, provigil, sativa, sugar, etc. But how long can we quick charge before the battery won't take a charge? And when we are left stranded there is no back up battery. No way to plug into the wall and recharge. We have only one battery. We must take care of it.

So how do we turn off those extra programs running? Visually I imagine the blinders on horses. Those eye guards that keep the horse looking ahead and not distracted. "Put your blinders on Caroline" and get to work. Focus on one project. Or one meditation. One walk in the rose garden. The point is to have just this one program running. And turn off all others. Blinders. This works for me, most of the time.

But there are those times when it doesn't work. When I need a distraction. And another distraction. And again and again until I have six programs running and my battery bar is slipping fast. "Put those blinders on." But sometimes it just doesn't work.

Then, finally, I stop everything and go lie down in a nice cool place that's not to bright. Closing my eyes and just being quiet. Recharging. Ahhhh. It takes strength to keep our batteries charged. To know what we need to do to take care of ourselves. To unplug from others when we are on low battery and turn off our location services.

For me this meant learning a lot about boundary setting. Rules. My rules for my health. This can be hard on friends and family. Setting boundaries can take a lot of explanation, patience and communications. But it's essential for defining our needs to keeping us alive and void of fear. To live life on a full battery. That's my goal. To manage my software and take care of this battery before it won't hold a charge.

Let's do this. Let's keep our batteries charged. Let's rid ourselves of fears and vulnerability. It's time. It's time to take charge and recharge.


Creating your own health: Using Diet & Nutrition to Treat MS

Probably one of my biggest factors in managing my MS symptoms is the use of diet and nutrition.  During my three years in the double-blind, T-cell study, back in 2001, my hopes were on nutrition and all things alternative.  I willingly went off all DMD in search of a cure for MS.  But then reality set in, and it was all engines forward in the battle of natural ways to fight the progression of this disease.

Sporting my flower peace wreath
There is a lot of incoming research on Diet and MS.  There are also some active clinical trials.

Click this out:  Here is my article on Diet as a treatment for multiple sclerosis.

Diet - or better yet, a nutritional protocol, is essential in my daily battle against MS.  If my daily intake has too much salt, too much caffeine, too much gluten, too many processed foods, then I will pay the price.  And while that price may not be paid that same day, trust you me that it will not forget and will rear its ugly head.  And, more often than not, all of the prices will want to be paid on the same day at the same time, wreaking complete havoc on your life.

Go for color when cooking and creating healthy menus 
Fresh lemon is key!  Use in water, tea, baths, etc.

Click here for my article on Diet as a treatment for multiple sclerosis.

Become friends with your body and find a new level of wellness.  

Welcome to living with multiple sclerosis.   As you know it often does not bode well for us MS patients.  Out diseases are random and progress willy nilly.  But there are modifiable risk factors that we can take into consideration to help us strive for the best life possible despite's our illness.  These risk factors include cigarette smoke, alcohol, nutrition, supplement intake, exercise, and other situations that we have control over.
~if need be - pee on it and walk away~

Cig smoking is bad.  Bottomline, cut it out.  Alcohol is considered OK in moderation.  Consult with your neurologist or medical expert.  Often people find that Vitamin D, B12 and Biotin can all be beneficial supplements.  In addition, the nrf2 activator, Protandim, is found to be great at fighting oxidative stress.

So, that brings us to Diet, or nutritional protocol.   Everyone is different so finding a protocol that works best for you is key.
Gluten free bread is an option.
Here it is paired with home-made soup and fresh salmon salad.
One person who is making a difference with diet and MS is Dr. Terry Wahls and her Wahl's Protocol. I had the great fortune of speaking with Dr. Wahls a few weeks ago for an article I was writing for - "Diet as a possible treatment for MS".   And wow!   So much great information going on with diet and MS.

The Wahl's Protocol is a modified paleolithic diet.  More about it click here. For those who do not know, Dr. Wahls has made diet a form of treatment for progressive MS.  Thank you Dr. Wahls!   I have been following and almost identical diet based on my own experience for over 15 years.  It is the number 1 "go to" when things are going bad with my MS.

And if you don't have fresh flowers, the fake ones are fun too!

First, I ask myself:  How is my diet?  Where am I going wrong?   And most of the time, this usually fixes it for m!   Like I say, everyone is different.  This is one reason I love the Wahl's Protocol - as it suggests elimination type diets to see what you personally are sensitive to and this is BIG!

Here is my article on Diet as a treatment for multiple sclerosis.

Here are some food common sensitivities:

Processed foods
Red meat
Simple carbs
Diet anything / excitotoxins or NaStY for MS

FYI - I eat dairy.  Cheese.  I tried to take it out of my diet once and my boss told me to add it back as the rest of the staff was complaining about my horrid mood.  That was near 30 years ago and I haven't tried to remove it since~  I don't eat a lot of it but like it now and then.   I will willingly cut everything else out, before the cheese~

Lately I haven't been able to eat much meat.  My body, probably due to the warm summer months, is craving cooling salads and fresh fruit.  Unfortunately I like beer, especially in the summer months.  It's not the alcohol that bothers me but rather the carbs and gluten.  Talk about a weight gainer!  And then if I add bread....Oh dear save me.

Last winter I made the mistake of letting way too much beer, bread and gluten get into my diet.  Showing no restraint at all for about six months eventually led to a 15 pound weight gain, horrid dry skin and then the dreaded MS relapse!   Ugh.

My vertigo and vision got so bad that driving was out of the question...even just to a friends house.  Lethargic and inflamed my life consisted of laying in bed and "trying" to motivate.  Oh how I hate this feeling!   My skin was dry and eczema appeared all over.  Hair loss was abundant and my breath was so bad it even grossed me out.   What have I done?  So healthy last summer and then wowza, what a defeat brought on by my own weaknesses.

Time to make a change!

Feeling the summer spirit, light and fresh!
Nothing huge at first, just cut the carbs back down to no more than 10% of diet or so.  Eliminated processed foods again and removed gluten for the most part.  A little now and then does not bother me.  But a six pack of beer and loaf of bread is not considered moderation.   That's OK, the change feels good.

Back to juicing and healthy eating.  Beautiful summer produce combined with beans and grains cooked fresh are making the table.  Herbs from the garden and cheeses and meats from local farmers inspire this cook to create.

Some of recipes for your enjoyment:

Anti-inflammatory Rice Pudding

Obsessive Gaspacho 

Juice Recipes

Chia Pudding

Words of Advice:

Try different diets.  Work with nutritionists who understand MS and the different trending diets.  This is your health - it is your body.  Do not try whack-doodle eating schemes.  Try stuff that has worked for others, the key word being "try".  Give yourself a chance with different foods and see what you might be sensitive to.  Everyone is different!  

Add color and energy throughout your house with fresh flowers.
Here is my article on Diet as a treatment for multiple sclerosis.