Monday

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

 

 

Making Friends with My MS

I spend enough energy being angry at my MS. And what's the point? It just tires me out and uses what little energy I have. I am always looking for those times when I exert too much of my precious energy and see how I can do things differently to preserve this special commodity. To me this is the very tool that helps me manage my MS.

When I received my cool little bracelet from CJFreely yesterday as part of Nancy Davis' RacetoEraceMS program, well, I thought, this is just like a friendship bracelet. And bam, it hit me, time to truly make friends with my MS!

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

How do I do this? How do I make friends with a disease that ravishes my body on a daily basis and tries as it it may to dictate my life? This is a tough one.

First off, I'm making a list of things I'm grateful and thankful for:

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

I know there's more but this is a good start this Thursday morning.

I think its good to also acknowledge what I don't like about MS in order to get the full picture. This will help me decide where I can improve in managing my MS.

  1. Unreliable. MS randomness makes it difficult to stick to plans.
  2. Each day is different. Pain, balance, cognitive, tremors, incontinence, vision, fatigue
  3. Inability to drive beyond local streets
  4. Panic attacks for no reason.
  5. Fatigue fatigue fatigue.
  6. Tired eyes, inability to read at times.
  7. Dry heaving, spasms makes it difficult to eat or have appetite.
  8. Muscle spasms at night make it difficult to sleep. Restless leg syndrome bums.
  9. Tremors tremors tremors. Hands and neck
  10. Clumsiness. Dropping things right and left.
  11. Loosing balance. Breaking toes.
  12. Folks not understanding the illness
  13. Randomness of it all
  14. Emotional rollercoaster
Things I've learned to say to myself:

#itisWhatitis

#takeThatMS

#NoTwotheSame

Things that help me befriend my illness:

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

Bottom line, in spite of MS:

I'm living a different life then expected yet a beautiful life with many opportunities and options.

Keep all doors open with this disease. You may have always defined yourself as a "strong corporate, get things done type VP" and then bam, the rug is ripped out from under you.

Time to redefine ourselves. That's what I did. Imagined and visualized all the things I loved in life since childhood. Which of things can I do? What have I always wanted to do and what is still possible?

Fortunately I hade a very full life prior to MS: successful career, horse trainer, river guide, adventure athlete, runner, mt biker, ww kayaker, rock climber and even jumped out of planes.

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

I'm finding out what I can do and what I can't. I think this is a continual thought process with this disease. And while some days I can do some things there are days I can't even get out of bed.

Take advantage of every second and every minute! Even if we are bed ridden, cane assisted, or walking three miles, every part of your life can change with MS.

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

Time to become friends with our MS!

 

 

 

Accepting pain- our new normal

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 hour 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!

 

Wednesday

Empowerment To Heal - Reposting today for encouragement

I wrote this a year ago today. Woke up feeling a bit blue and legs on fire. This was a good read to get me feeling good again. This post is from Oahu, Hawaii near Kailua. Love this place!

What a morning. Woke up. That was good. Had no desire to do anything. I was angry, pissy and antsy. And it was beautiful outside. My last day at the beach and my legs felt like concrete. After some water and self encouragement my clothes adorned, I grabbed my bag to go explore the town. Or at least to stretch the legs.

Sun was shining bright. A bit too bright. hat on. Body covered in light clothes. I wasn't sure if walking to town was meant to be. The ocean washed among my toes as the sand passed by. But the sun had a chance to stop me.

I wouldn't let it! Meditation, prayer, mental concentration took over. Focus on warmth was waning and walking became pleasant. A couple miles down the beach I veered into town and hit the road. Trees and shade from the clouds a pleasant reward.

Wandering can be such a freedom. How often are we stuck in neutral with MS. But not today. I empowered myself to mentally move beyond my illness.

I kept walking. Strolling more like it. Taking every sight in. Every sound. Soon, I was at town center. An hour or two later and I've explored local scene and ready to hit the road home. Knowing that I could catch a bus was a good back up plan. But I strolled back the long way and strolled down the beach one last time before my flight. What a feeling!

A morning of concrete boots ended with a beautiful six mile adventure. The feeling of empowerment was and is amazing.

We are capable of so much more than we realize.

There is a fine line between empowering to do good for your body and over doing it. Today I found the balance and it felt amazing! The meditation while I walked created the attitude adjustment I needed. I pushed myself but just to the level of comfort.

Upon returning home I took necessary precautions and drank a double serving of "Calm", a magnesium supplement, took a rest and drank plenty of water. Boy did it work!

All of my negative energy that I awoke with was gone. A clean, clear presence swept through my body. Peace again for this GirlwithMS, peace again.

 

 

 

Saturday

My 1st MS attack, learning to flow like a river

Thirteen years it's been since I stumbled my way through Guatemala with a disease I knew nothing about. Here is a quick video of me remembering my initial attack. Through the course of three weeks I lost ability to walk or see unassisted...what was going on?

Finally I got in to see a neurologist and after spinal tap and MRI, it was confirmed. I have multiple sclerosis. I have what?! Learn to deal with it. I started with copaxone but then was asked to join a three year double blind study with the chair of neurology at USC. Sure thing, I said! And so glad I did as I have spent the last thirteen years learning to better manage this condition without the use of many prescriptions and with the use of certain foods and supplements along with a change in lifestyle.

It's difficult to describe my vision issues but this is a good image of what it feels like. Not sure how I took this photo but it works! Don't look at it too long...

My vision under an MS attack

We can do this! MS changes our lives but it doesn't have to take our lives. In fact, the more we learn to go with the flow the better our illness can be managed.

Think of a river, floating along some riffles, tootling around rocks and staying in the green water when wham, a huge rapid appears around the corner. There's no eddying out on this one. Time to see a path and take it. Commit. We can't fight the white water, we must flow with it around the obstacles causing the rapids.


This is the attitude that helps me deal a with my MS a little more each day. It's not easy and may not be successful with this mindset, but it's a focal point for me. And that is a good thing, having a focus.

 

 

Thursday

Did I just sleep through the night? A detox journey...

Did I really? Did I just sleep through the night? No hot flashes. No sweating. No body odor. For once in a very long time, my body is not sending every piece of energy it has to expel toxins.

Seven days of detox and my body is celebrating like crazy!

I started slow with my Fall Detox by adding ionized water to my regime using a Kangen filtration system by Enagic.

"A gallon a day will keep the doctor away."

The gist with ionized water is that by consuming alkalized water we can reduce the acidity in our bodies which is considered by many the basis for disease. The ionization process used by Kangen basically turns tap water into a variety of alkalized and acidic waters depending upon the users needs.

What am I detoxing from? From Life. My environs. My lifestyle. There are toxins all around and in us that we don't know. Even if we live a "healthy lifestyle" we are susceptible to many toxins around us. OK, time to do this.

Here I go...

The detox journal begins:

Days 1-3

Insomnia prior to starting program continues.

Night sweats continue.

Cramping, sore muscles.

Pain continues as usual.

Water: 8.5 ph / a gallon a day

Diet: as usual

Essential Oils: diffuse Zendocrine, detox Blend from doTerra at night. Serenity blend to help sleep. Bathe with drop vetiver at night for sleep. Diffuse peppermint in morning for clarity.

Days 4-6

Sweats continue. Detoxing. Stink. Cog fog. Bad. Body odor! Oh man. Don't hug me.

Water: 8.5 ph / a gallon a day

Diet: remove caffeine, decaf, sugars, salt, processed foods. Aim for lighter forms of protein. Lean and clean foods.

Essential Oils: diffuse Zendocrine, detox Blend from doTerra at night. Serenity blend to help sleep. Bathe with drop vetiver at night for sleep. Diffuse peppermint opinion morning for clarity.

Day 7 Tuesday.

New level of detox

Urine. Released a lot of stink.

Sweaty night then amazing clarity this morning.

Water: 8.5 ph / a gallon a day

Diet: Veggie and lentil soup, salad for lunchDinner a small, small piece of steak, some potato and green beans. continue with the lean and clean mentality. Natural and whole foods. Water at every chance.

Essential Oils: diffuse Zendocrine, detox Blend from doTerra at night. Serenity blend to help sleep. Bathe with drop vetiver at night for sleep. Diffuse peppermint in morning for clarity.

As I sit in bed, reviewing my day, I'm feeling tired. In a good way. That way when physical and mental energy are both ready to rest. When your head hits the pillow, sleep is not far behind. And I think of the mental clarity that had come over me this past week.

Has this recent clarity been a result of the Kangen water, detoxification and hydration of the body? It's the only change I've made to a relatively stable regime. I do not know for sure. What I do know is that I am loving this feeling. My mind is thirsty once again but not for water. For knowledge.

I was driving to a meeting this morning. Usually music is playing, getting me in the mood. But today I am listening to NPR. I've had it on all week. This is reminding me of my life prior to MS. My life with a mind that could absorb like a sponge. A mind that wasn't clouded in MS related cognitive fog or "cog fog".

At the meeting my mind wasn't fighting to keep up. I was so far ahead that the questions and analyses were flying through my brain, inspiring a continued flow of mental stimulation.

Am I back? What just happened? Can it be the water?

Day 8. Wednesday.

Oh wow. Did I really just sleep thought the night? I woke once and couldn't even tell you at what time. A little moisture around my hairline but no sweat on my night shirt or sheets or me for that matter. And other then a few, sparsely positioned moments of flatulence, my body, for the first time in the past my week my body is not spending every moment expelling toxins. What a relief!

Grab another gallon of water and start a new day.

Water: 8.5 ph / a gallon a day

Diet: lean and clean. Ok. I've got this!

Essential Oils: diffuse Zendocrine, detox Blend from doTerra at night. Serenity blend to help sleep. Bathe with drop vetiver at night for sleep. Diffuse peppermint in morning for clarity. Using aromatouch for pain and vetiver to help sleep.

I have Lots of meetings today so I'll be carrying and drinking bottles of Kangen filtered water.

I also have my essential oil emergency kit with me full of necessary tricks to get me though the day!

OK...off to conquer the day. Will keep you posted!

Days 9-10, Thursday, Friday

Well, my body has detoxed. I always love this feeling after my seasonal detox sessions. My mind is clear. My emotions stable. Physical and mental at their best possible considering conditions.

My meetings were spot on this week. The cog fog diminished to a point of manageability. A few mistakes here and there when words didn't come to me. But all in all, feeling full of life.

In fact yesterday I took the day off. Played hooky. My friend and I drove up the mountains. This is my backyard, Hwy 2 in California. Of course a quick stop at mt Wilson was on today's agenda.

Amazing views along the way over the San Gabriel's.

We need to remember to take time out of our lives to enjoy the beauty surrounding us. Even if the beauty is a curiosity, the awareness we bring to our surroundings is directly related to the amount of joy in our lives.

Every moment.

Every vision.

Every breath we take.

Soak it in.

Life.

 

 

 

 

 

Multiple Sclerosis in the News

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