Sunday

Lizard brain will survive!

I will survive, Cake, bringing up memories of kayaking the McKenzie River, Oregon. Perpetually in my CD while driving up the river, I may never have progressed as far without the help of that quirky music. And friends. What a change for me, from working with horses 24/7 to playing with friends and everything outdoors. I had been a class IV river guide on the Kern River, California, but not one of your better ones. I preferred creative food buys and driving shuttle. And the people. Always seems to come back to the people in my world. But that was near ten years earlier. My life had been horses, period. Time for a change.





My love hate relationship with water I knew no other feeling. Those beautiful moments, the ones where my brain clicked off and let my instincts go, will forever burn in my mind. The green water of surfing the ocean outside Florence, Oregon, window shades and stern squirts, creeking, floating. The moments it clicked there was nothing like it. One with nature.

A beautiful spring day, friends around, sun shining. McKenzie river refreshing after a day in the corporate dot boom. Clover at just the right level. Side surfing, moving it around, relaxing, rolling, playing with river otters. Yeah, that's one with nature.



Those are the memories I want to hold onto. Because the other memories, the fears and anxiety of not feeling one with nature. Of feeling in such discord that the slightest roll left me swimming and freezing on our annual News Years Day float trip on the icy upper McKenzie. Or the time I entered the Redsides White Water Rodeo - 1997. Old-school boat was fine with me. Redsides already ate my lunch earlier that season. Luckily a nearby friend anchored my skirt down as my hands were barely able to grasp my paddle with anticipation.



Let me go first, I'm ready. In other words, get out of my way before I panic and run in front of all these people. Luckily my lizard brain took over, instincts ruled and I had an awesome run. Even the Patagonia rep was clapping, good sign. Unfortunately my thinking brain kicked in. By the 5th round I lost it. Missed my roll and swam. Too freaked out to go back in I forfeited my round and lost the tournament.

That is what we trainers call hot and cold. Not a competitors winning strength. But it was a push for me, to be in that rodeo. I loved kayaking. I hated kayaking. I loved the lizard brain. Detested the thinking brain. of all things it was great for my multiple sclerosis.

The water therapy alone was enough to keep my MS at bay for several years. Rolling in the McKenzie is a bit of a breath-taker when there's snow on the ground and you are layered in fleece and dry-suit. My friends were another therapy. Especially the one I didn't listened to that much. my chinese doctor.

Kidney yin deficiency. Follow the diet. Follow the life style. But did I? Nah. I kept burning along, literally. Until I burned out.

Thirteen years later and how am I finding ways to survive MS? By following a kidney yin deficient diet. After two more diagnoses and research it became obvious that the answer for me was right in front of me. And had been for years!

So, what is a Kidney Yin Deficient life-style? That will come in another post. Lucky my fingers have lasted this long...

Tuesday

Talkin' about My Medicine!


Folks have asked for years, what medicine are you taking to do so well with your MS these days?

According to Dicitonary.com, there are several definitions of the word, medicine.  One that resinated in my mind was this one:

"the art or science of treating disease with drugs or curativesubstances, as distinguished from surgery and obstetrics."  dictionary.com

So, what are my medicines?

I'm happy to report that my list NOW only contains the following:

Water
Food
Supplements
Essential oils
Daily life management
and
Medical marijuana

I had been on klonopin for nearly 14 years due to spasms.  I quit this summer as my regiment seemed to be working better and there was no need.  But, in order to go off it, I went on an insane two week long detox, including Kangen water, essential oils (diffusion/topical) and clean eating.  I am still 'detoxing' from it but have only taken 1/4 pill on two separate occasions in the past two weeks.

I agree with the dictionary. And, I feel that the right mix of art and science will lead to medicine that will help us all heal.

Over the years, since my initial diagnosis in 2001, my plan is increasingly managed by natural remedies.  My medicine has included many, many types of drugs from Neurontin to Copaxone, Provigil to Klonopin.  I don't want to be on these drugs.  Each one has or had an annoying side-effect of some sort.  I want to be as clean as possible.  But the pain.  Oh, the pain!

At first I had seizures and dry heaving spasms.  I couldn't eat.  My body became emaciated, bones pulling through my skin as it hung loose.  The medical marijuana helped the spasms.  It helped the appetite.  Slowly, very slowly, I became closer to normal than felt in years.  And the pain, oh the pain!

Not much to use these days for pain.  NSAIDs, well, I'd prefer not to thank you.  My gut integrity is vital to my health and my body does not perform well on non steroidal ani-inflammatory drugs.  I am not going to take pain pills every day.  I want a clear brain.  But the pain.  Oh the pain!


One of my personal MS symptoms that got out of control was my instant intense fatigue.  I had never experienced anything like it.  I wanted to sleep and sleep.  rest and rest.  This scared me more than anything.  Pain, Seizures, I can deal with.  But fatigue?  Give me my body back!

Interestingly as I started consuming the sativa variety of the medical marijuana, my pain started to subside.  wow!   not sure why, but it works and I am more functioning than I was before taking it. AND then I found out that if I consume the right kind, it helped with my fatigue.  Really?  Yea, really! There are different strands of MM that help with the variety of MS symptoms.  I find it a bit of a "All-treating" medicine at times.


Combine the MM with my continual awareness and use of nutritional intake using food energies (cooling, warming, etc), a constant flow of clean water, clean eating, supplements and essential oils.  I use doTerra's Life Long Vitality

vitamin mix to great results.  In addition the use of essential oils play a role in both topical and aromatic application.  Often there is "Roman Chamomile" or something soothing diffusing away in my room at night, or a perky, breath freshening spot of "Breathe" in the morning to wake up the senses.  At night time a bathe with "Vetiver" or "Serenity" is often in order.  And often this is followed up with "LemonGrass" massaged into my aching thighs and shoulders.  

But no matter what I rub on my legs or digest in my stomach, it's the day to day life management skills that help more than anything.  These are skills that include setting boundaries, learning to say "no, thank you", finding out how to maximize results with least efforts and lightening up on our own expectations.

We have an illness.  It's not our fault and we didn't ask for it.  That doesn't mean that we need to punish ourselves.  This is the time to be kind.  To forgive ourselves for getting this illness and time to move on.

That's a bit of my medicine!

Support, social media, friends, family, community, faith...not in that order but it all helps.  That means it's all part of my medicine.

What's in your medicine?

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!

 

 

Saturday

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.

 

 

 

 

Wednesday

Let's get moving!

Even from bed or a chair, we can get the body moving and flowing. I was able to stand for some of these as I've been working daily on balance and other MS related issues. Wanted to share and continue to receive inspiration from you, my friends. Please remember I am not an instructor. I practice a casual form of stretching based on yoga to help keep my MS at bay. Yoga has been my number 1 solution for this crazy disease, from emotional support to physical confidence. Don't know where I would be without it!

Whatever we do, we need to be safe, gentle and always thinking about our illness. This is what I do:

 

Saturday

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.

 

 

 

Multiple Sclerosis in the News

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