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Survival of the Fittest

Survival of the Fittest

Team Athleta • Aug 28th, 2008 • Category: Adventure Travel, Customer Spotlight By Caroline “Noni” Craven, Adventure Traveler and Photographer
Adventure is my game. I’m not an extremist, but have been known to play: white water kayaking, mountain biking, rock climbing, anything and everything in the snow. Name it, I tried it. A previous life was filled with river guiding and horse training. Play hard, work hard. Until it caught up with me.
Seven years ago I was diagnosed with multiple sclerosis (MS), an oft-debilitating disease that encroaches on the nervous system. MS affects the same part of your brain as alcohol, creating ...Survival of the Fittest

Often it's best to forget the MS

Expressing myself through writing comes and goes, not different then the rivers of wild.  Seasons effect.  Life evolves. 

I am not as consistent as I would like.  I am frigid and scared to express true words. 

More on me later. Time to do what I did earlier:  AIM yoga, meditation, Shentrition, exercise, friends and family.  Everything important to me and not in that order. 

Live strong as Lance would say.

Live Now as I would say!  

a friend with MS

Anti-Inflammatory Dessert Recipe to Astound Your Friends!

Now here is a recipe I can respect!   Medicine in a bowl.  Thank you Alex.  Always the resource of wonderful remedies.

For those who haven't met or checked out Alex Jameson, check out here website and amazing healthy meals to get you on track!

Anti-Inflammatory Dessert Recipe to Astound Your Friends!

Town on Fire

Originally uploaded by nonisense
One of my favorite photos. The city of Banos, Ecuador. The lights to the right represent the new evacuation route as this is volcano country. Taken from the lodge at Luna Runtun. Loved that place!

Flying Tortilla

Originally uploaded by nonisense

Mobula Ray, Galapagos Island

To remind me about the importance of patience.  Each of my photographs, every image, a result of an inner peace found when one reaches the zone.  But with multiple sclerosis sometimes it's difficult to be in the zone physically and mentally due to a variety of symptoms the disease brings about.

Wildlife photography provides a zone for me.   A simple walk around the block, in just the right light, will sometimes yield the smallest of miracles.  Like this Mobula Ray taken from the National Geographic/Lindblad tour.  This was a real catch.

Colors of life

Taken by the Green River in Ecuador on travels from Banos to Amazon.  The sun was out.  A brief rain had fallen.  Butterflies were out dancing - not to be forgotten!

Periander Metalmark [Rhetus periander]

Times like this where I am thankful that I can focus on a butterfly and ignore the debilitating disease is multiple sclerosis.  Wildlife works for me. Nature.  Photography.  Especially because there is image stabilization.  Necessary with my shaky hands.  

But now, the fingers begin to fail. No more typing. No more doing much of anything.  Time to rest and take a read or something.  Probably all the chocolate I've been consuming lately.  Nah.  It's never the chocolate!  

Forward ho...ho...ho...

7:52PM Bedtime?

So the toddlers are gone.  The house is instantly quiet at 7:52PM.  Should I cede to bed as well?  go out to celebrations around town regarding school board elections?  stay home and get caught up on friends and family?  Yeah. The last one. Friends and family.  Always a priority.  With Multiple Sclerosis one must define priorities.  Bummer at times but helps in the long time. 

January will mark the year 2010.  I remember Y2K at Mt. Bachelor.  Dogs.  Snowboards.  Skis.  Sofa surfers.  It was all good.  Now.  Ten years later and it's all good.  Just different.  The sofa surfers are 4 year old toddlers and the skis haven't seen this side of snow since Sundance a few years back. 

I am content catching up on personal items.  A much needed project after this month of illness, children and life.  None of which I would trade in for anything on this planet.

So tired.  Eyes heavy.  More later.  Sleep well.  Take care, be safe, eat healthy.

Stop and smell the roses

A priority with MS - stop and observe the roses, it's critical. 

I had not realized how run down my body had become after this summer.  I had a flu shot which has never happened.  Maybe it was good.  Maybe not.  But after several colds and my first dose of antibiotics in over ten years, my body needed time to rest and rebuild.  Multiple sclerosis will steal your body of vitality.  It is our responsibility to manage our energy as we would the fuel in our automobile.  And at the price per gallon for oil that means quite judiciously we will act! 

Stop.  Smell the roses.  Bless your family and friends.  Bless yourself.  Tomorrow is another day.  Thankfully.

Me Time

Me time - a critical part of life whether one has MS or not.  But today, Monday, is Me day.  No meetings.  No errands.  Time to relax and rebuild.  Some work, catching up on paperwork, admin type stuff.  A production meeting with Self which I do while walking Ellie Hound.  I have several fun projects in the works right now.  Helping some friends out with some marketing work.  Printing photography - Oh, that might be an errand. I'm out of toner, again.  Time to feed the monster again.

But it's also time to take care of me:   laundry, exercise, meditation, education, reading, friends, family, nature, life.  And that is my priority today.  So - Off to enjoy.

I did have some beautiful early morning time with Isabel Allende and her Ines of My Soul. What beauty in storytelling.  Between Isabel's words and the Seattles Best coffee in the french press, it has been splendid already.


Many of my friends have been asking about ShenTrition and how it's been helping me survive MS for the past two years.  And we're talking surviving beyond belief.  I'm actually riding horses again - exercising in the heat and taking care of myself a little better each day.  So what I tell folks is to go to http://shentrition.com/ and read what Stephen and Erica have written about stressors.  This is HUGE for MSer's.  HUGE.   Just read, absorb, and let's chat about this.

I'm off to make some ShenTrition right now...peace

sister you've got it all

sister you've got it all -
...you've got it all...
There are no damaged goods with MS.   Its all about the attitude.  Sure we have our weaknesses and faults but who doesn't, especially after some forty years of enjoying the heck out of life. 

I surely don't miss the corporate world.  Even the business world.  It's a stressor for me.  I used to love it.  Capitalism.  I would eat it up.  But these days, post MS, I could care less.  I just want to live each day. 

of course - its Townes van Zandt...

It's Townes van Zandt.  Interrupting my thinking.

Of course it is.  Be here to love me.

And where is he?  That man who said he would be here in the morning.  How many times have I heard that crap.  Seriously. 

I do wonder if folks see me as damaged goods.  I have a lot of weaknesses.  My inability to drive in traffic and highways for one.  My need for naps and rest.  Having to continuously survive this disease by taking care of my Self - every day, creating a feeling of self-centeredness. 

MS does effect your life - more than most believe.  We can go around on many Western medicines and ignore the symptoms.  But the symptoms are telling us something.  They are indicators to change your way of living.  I don't think that I consider myself damaged goods but I must in some ways because it's a recurring theme in my Self dicussions. More on this later.  


absolute babble

Friday.  Grateful Dead rocking my headphones.  Time to chill and rewind.  What a strange couple of weeks.  The relapse.  I pushed and my body pushed back.  The cold.  I pushed and my body pushed back even harder.  There was no decision to be made - my relapse was here to stay. 

My Shen-Cleanse was a release.  Timing was right, energy good.  The other day I was lost for over two hours in a beautiful, renergizing, releasing spiraling yoga practice.   Books upon books.  Fire upon fire.  And the naps.  Oh what luxury I took. 

And then this week.  After rain-showers and mud-slide fears we are experiencing 90 degree summer days.  We might just get some little growies up in the hills before more rain.  I even heard chatter about opening the local ski areas, well Mt. Waterman.  don't think there's anything left of Kratka Ridge, or whatever they called it during it's demise.  Now that was a Beer Cellar! 

Healthy to have fun memories. Healthier to make fun memories. Today, riding about on this beautiful day, I captured a memory I hope to never lose.  The rhythm of the oaks, on three different mounts.  Friends and family around.  Happiness, sunshine, a refreshing day. 

Off to enjoy the multiples sclerosis.  It's a good reason to sit back and chill.  It is the play-off's and the Dodgers won.  Angels and Yankees playing now.  L8R G8R

Coopers Hawks Invade

Actually, this poor little guy made several failed attempts at the doves...he/she isn't too swift yet.

Cleansing, Shmeansing

But boy do I need it.  And what a treat it's been.  Fresh greens at every meal.  "kidney eggs" (whites with turmeric) several times a day. Fruit all day long.  Bacon, because it makes everything taste good and I need some fat.  

Chard, turnip greens, Fuji's, Gala's, Bacon, walnuts, fresh Basil, fresh Tomatoes, Humboldt fog, hmmmm...neeed I say more? 

Sometimes I can't be as detoxifying as I would prefer but if there is free food around I'm not going to pass it up.  So I had some taquitos.  Go ahead and eat one or two but fill your plate with detoxifying radish salad and cooked greens not to mention organic re-fried beans. 

Make sure to add lots of fresh fruit and cooked fresh greens.  Avocado doesn't hurt either, especially if you need the calories.

more to come...

Annoying as all get out

OK, it's 12 October.  Near the middle of the month.  And what.  What have I done? 
Been bed ridden.  That is for sure.  Read a couple of good books. Got caught up on sleep and rest.  Most importantly got caught up on nutrition and health.  But the 12th?  Come on.  Slow down.  Can't we jog a bit?  What's the rush? 

Just slow down, smell the roses, fall is here.  What a summer.  What, a summer.

Soar with eagles, rise with robins.  Pay the price girl.  You burned the candle at both ends and you know it.  Two weeks down isn't a bad investment.  What a summer. 


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...

Stuck in pigeon

Several minutes at least, facing weeks of built up anxiety, I melt through pigeon pose.  Streams of energy shooting out limbs, new areas of energy released.  Breathing with anxiety through layers of emotional build-up.  There is no point in berating myself for not giving my Self a good Spiral of late.  And there's no point in lying.  A month at least.  Probably two.  Some small practices here and there but for a good, two-plus hour Spiraling mediation, it had been too long. 

I can't spiral when weak so after some build up calories,  I made some Peets decaf in the french press but immediately lost myself in my Spiral before the coffee reached my lips.  iPod on, safe place, no fear of interruption. This is peace.  Using a mix of learned methods of Yoga and other practices the Spiral is a free-flow practice that goes with the flow.  From the music inside or the rustling of the trees if practiced outside on a light fall day, Spiraling is a form of connecting body, mind, soul and earth.  To revitalize and rebuild.  To center.

Spiraling is for anyone.  For practice just find a safe, quiet place and set a certain time aside.  If you have a time limit, set a timer so that you can get lost in your meditative flow.  My practices come from a variety of modalities and resources I have picked up over the years.  Here are just a few:

Matthew Mixer, licensed acupuncturist, Ashtanga yoga, Chinese herbs
Shen Life, Stephen and Erica Rogers, Chinese herbs, yoga, massage, spiritual, ShenTrition
Shiva Rea, yoga

So today I started out with just some easy standing yoga and flowed down to the ground with a variety of moves.  Beginning with a deep spiral into the grown through my feet that centered feeling begin to fill my body.  Slowly, breathing deep, standing tall.  Hear the ribs and neck creak.  Spiraling my parallel positioned feet underneath me so that my hips drop and open while my my legs continue to stretch up and down into the ground.  Raising the chest and opening the airflow deep into my abdomen the meditation began. 

Or I should say the emotional release began. 

Moving with the flow of the music my body resembled a river, rhythmically rolling and stretching while the tears flowed.  First the anger.  What about?  it didn't matter.  Every issue on my "to do" list came magnified in mind while I ranted and raved about everyone's faults but my own.  I kept spiraling. 

Anger soon turned into sadness realizing my own weaknesses and inabilities to follow the expectations I have of my Self.   Flowing through a variety of movements I let the emotions continue to obsess body and soul. 

And soon I was laughing, at each and every item that is on my list.  I have solutions.  They are in my mind and will arise when the time is near.  There is no need for panic.  Some revelations came as well.  A new thought to reduce stress was to end the marketing boutique for now.  My energy resources are limited and conservation is critical.  Horses are obviously a priority as well as photography.  The rest can wait for another time.  Except for friends. I'm still continuing to advise friends. 

So for now I revised my website and will focus on the projects at hand, and most importantly my nOnisense blog about MS. 

Thoughts for the day:

  • find modalities that work for you:  yoga, meditation, nutrition
  • continually analyze your stress level and make adjustments
  • keep up with friends, family and community for support
  • find healthy escapes for your MS - exercise, studies, blogging, photography
and most importantly, keep smiling!

Emotional overload

The natural flow of the sycamore held up through the trimmers.  Often not the case.  An umbrella but not harsh to the eyes.  Maintenance on trees is important.  No matter how many tears fall as the plentiful wildlife is disrupted.  Bill Peet is in my head.  The fat little racoon from Shady Glade is wagging his finger at me...Those big sad eyes.  Don't destroy our homes.  OK, enough guilt.  Emotion overload. 

One thing I often forget about relapses with MS is the emotional roller-coaster ridden in various forms and function.  Crying one moment.  Hysterically giddy another.  Granted the highs are pretty good but the downs can be heart wrenching.  And it goes the same with anger and frustration.  All emotions. 

We need to take care of our emotions.  Each and everyone of them.  Cradle, love, respect and take heed of them.  That's what I'm off to do.  Some meditation, yin yoga, ahhhhh...



interesting enough, almost immediately after my post about sheryl crow my father asked what was up with the LA Times Magazine.  Now obviously a 77 year old man is not the target audience for the LA Times magazines, breast cancer, or Sheryl Crow, but his concern:  her skin!   Because of the way the photograph was produced it creates a look of extreme sun damage.  He asked me if she was sick.   Here they are trying to promote a healthy image, one that I saw (such a product of Hollywood I am), but maybe outside the world of Hollywood the image is misconceived.   Always interesting to hear a perspective from a different audience. 

Patience for the Petrol

Patience for the Petrol
Originally uploaded by nonisense

One of the most beautiful places in the world - the Galapagos Islands, Ecuador. Humbling. To be human.

Coming Out with MS

Did you know that some MSers don't talk about what ails them because it is so little understood?

I know folks who feel they have to “come out” to express the fact they have MS yet here I stare at the cover of LA magazine with Sheryl Crow, breast cancer.  Even the NFL teams had pink on for awareness of breast cancer.  I think it's great.  It's all about the marketing.  Pink, October, Mammograms.  Excellent job.  The image around surviving breast cancer is the image we need about MS.

We are survivors.  Every day.  It's an annoying, pain in neck disease that will rob you of your life.  It may not kill you physically but it will destroy your Self if you do not understand and manage it.  I call it manageable stuff (other words come to mind, but this is G-rated) but that’s what the MS stands for, coming off of a 5-day relapse where I had to revert back to the cane.  But not today and that’s all that matters!  I mismanaged, paid the price, started feeling a major relapse coming on, vision, balance, strength, everything.  But I listened to my body and stood my ground with boundaries to get well:  Reduce stress, eat healthy, quiet, rest, peace...

So how do we raise awareness with the general public about MS because the current program isn't quite working.  Many options but basically we need a really hot spokesperson like Sheryl Crow.  But since she's busy fighting cancer we need to find someone else.  And I'll be honest, Montel Williams just doesn't do it for me.   This is something we'll have to work on because we should be proud of surviving this insidious illness and spend our time enjoying life. 

Actually, upon first viewing the Sheryl Crow cover on the LA Times Magazine for October 4, I was bored.  I thought really, another half naked, hot sexy, cancer survivor.  A bit pedestrian but it is Sheryl Crow.  And she is hot.  And there is photoshop.  But the point is that she brings up very poignant points about surviving cancer that relate hand-in-hand with surviving MS.  

"The mythology I created for myself as akid was if I took care of everybody, then everybody would love me.  If I made myself without needs, they would lvoe me more.  I think that's where I was fragmented all the years before my cancer diagnosis." - Sheryl Crow

I don't know about y'all but this hit close to home for me.  Here are some topics she discussed.  All of them are a part of my own healing regime, so let's do them together:

1.  Motto:
"Dont sweat the small stuff" - Sheryl Crow reminds us of the importance of this oft used saying.  
"Live the life you love, love the life you live" - reminds me that we only come around once (depending of course on your spiritual/religious beliefs).  All I know is that I'm alive right now, right now.  So enjoy this beautiful planet we have and all the beautiful people. 

2.  Self-Love
I've mentioned this one before but you and only you are responsible for your Self.  Take care of it.  And that means giving your Self time and attention.  Spoil your Self. Without guilt!

3.  The Big Lesson
Everyone has a different lesson to learn.  Mine was learning how to transition from a power player to a finesse player.  I learning something new everyday.  

4.  Spirituality
Sheryl's cancer was in her left breast.  Some say that the left breast represents nourishment coming into the body and the right represents nourishment going out.  Interesting to think about.  There is a spirituality within our bodies that requires attention.  Seek it.  Love it.  Nurture it.  

5.  Getting through it
Sometimes you just have to cowboy up.  But depending on how your MS hits, getting through it can often mean major life changes.  My initial attack rated at 5 martinis.  I looked that drunk at seven in the morning.  OK, seven in the morning without any martinis or alcohol of any sort.  I'll never forget the day that I could turn full-circle in the hallway without crashing into a wall.  It's not a very wide hallway mind you.  In the beginning I was just grateful to be alive.  To be breathing.  My primary needs were being met by my loving and caring family and friends.  I was surviving.  

6.  Go-To Guys
Of course, Sheryl has go-to guys.  Sure, I wouldn't mind some go-to guys.  Fortunately I have family and friends who make my life quite pleasurable.  

7.  Meditation
Necessary.  I'm not very good but yoga, meditation, peace-finding exercises.  Try them.  Do them. 

8.  Turning point
Several turning points have rotated since my illness but a significant one was in 2008.  I had lived the disease for seven years.  Call it the seven-year itch but it was time to define myself outside of my illness.  I applied for and received a scholarship at the Art Center of Design which I attended at night for graphic design.  I dove into my photography with several art shows and presentations.  And the riding of course.  Horses came back into my life after a 15-year hiatus.  

9.  Aging
One definition I have for MS is what feels like pre-mature aging within my body.  But then, maybe if you burn the candle at every end possible like I have, you just burn the body out.  We are only human despite what we do to our bodies.  

OK - so that's my input on the article.  An enjoyable exercise that helped me think about certain aspects of my disease and how I wanted to approach them.  

One day we won't have to "come out" with our various diseases.  People will understand.  Seriously though, imagine if Ellen had MS.  She would have so much fun with it and get the word out about better understanding it and all of it's elements.  Now I'm not wishing MS upon her but we need some good hype about it.  Educational hype.  It was great when the West Wing was on and the president had MS.  We could look for another character to absorb the role.  

Something to think about. 


Schnoodles, fatigue and need for naps

Meet Mitzi, a one year-old Schnoodle.  Pretty cool for a little girl.  I'm more familiar with larger dogs, mainly hound dogs that have been trained to track bears and such.  In fact, this little girl is about the size of a gray fox we treed once, but that is another story, from many lives ago. 

For now, I'm watching a one year old schnoodle chase lizards throughout the yard while sipping Yogi tea from Eugene, Oregon. The tea which I have forgotten so many times to actually pour into my mug and is now tepid but quite flavorful.

Mitzi has quite a bit more energy then myself these days.   She is a great example of understanding the necessity of naps.  And I think I can speak for the entire MS population as to how embarrassing it can be to have to say you need to take a nap.  One year your an executive vice president and the next you have to ask for a nap.  But you have your life, right?  could be worse.  could always be worse... 

We don't hear the dogs say, "well, now, I'm a bit tired because I....blah, blah, blah..".  The fact is that they get tired and they take naps.  Dogs don't need to make excuses or reasons why they are fatigued.  They just go to sleep.  How nice would that be for MSers?  To be able to just go take a nap when needed or to say, "I'm a bit spent, I'll do that at another time" without being given that look.  You know the one, the one that says, "you lazy sack ...".  

Interesting that many MSers are over-achieving, multi-tasking, people-pleasing people who know how to cowboy up better than most.  The fact is, MSer's have to learn how to chill out.  And try to chill out without people giving you that look.   Folks just don't understand MS or what the fatigue can be like.  Unseen on the outside so must be fine on the inside.  If we wore our fatigue like a rash across our faces then folks would understand.

I was fortunate that my illness debilitated me to the point of losing my ability to see or walk unassisted.  My friends saw the results of this horrific attack and we were all relieved that I was not stricken with something worse.  We were collectively grateful for my diagnosis.  With that in mind, I wasn't judged by my close friends as they saw me go from a jello jiggler to a somewhat functioning human being.

But many MSers carry around the fatigue that is seen only on the inside.  The public doesn't see it. Their co-workers don't see it.  Their friends don't see it.  And if it's not seen, well then, we know it doesn't exist.  Forbid we should actually look healthy because than the doubt really comes into their eyes.  Shouldn't we all be in wheelchairs? 

I was fortunate.  I ventured back into the corporate world relatively soon after my diagnosis.  My vision and balance were still at about the 3- martini level, but the rest of me was coming back.  And my brain was in need of some major stimulation.  So back to work I went. With one caveat:  Nap time.

I did.  I literally asked for nap time in my job description.  Heck, they were getting me as a blue-light special and they were taking a chance.  But it worked out.  It was the necessary next step in my life, and it included mandatory nap times.  I would lock my office door, lay down on the floor and set my Handspring's alarm (this was some eight years ago).  "WUP" is how the date entry was listed.  Wake - UP.  WUP. 

Now I get to WUP pretty much anytime I want.  An absolute treat for MSers.  Even if it's a 20 minute meditation of quieting the mind.  It's all good for learning how to chill, thus becoming healthier by the day. 

In fact, I'm off to wup right now.  My fingers are fatigued.  Mind, eyes, and body quickly following...

We only come around once - it's our life we are talking about.  So listen to me:  No apologies.  If you even think the word nap.  Take a nap! 

Finally...a respite from the MS

Today is definitely a new day.  Yesterday I had foot-drop going on and could barely walk the little schnoodle.  shnoodle.  however you spell it, that's what I was walking.  And then I kicked it into gear for a meeting.  My only social outing of the week. 

 I'm not sure what it was exactly that healed me this time but most likely a combination of medicine, rest and quiet.  It surely wasn't nutrition.  Not to bash lasagna, spinach souffle and mac n' cheese but my greens were definitely absorbed via ShenTrition. I even consumed mass quantities of candy and junk food:  caramel popcorn, vanilla pudding, licorice and ButterFingers. Processed foods - the WORST for MSers.  And here I was consuming as if there was no tomorrow. 

Fortunately my relapse coincided with a house-sitting gig resulting in absolute peace and quiet for five days. 

Many folks do not understand how much energy it can take to just listen to someone, when you are feeling weak with MS.  I call it sensory overload.  The voice, the energy, the hand movements.  And then add several people into the fray.  It's debilitating for MSers.  And then we require attitude adjustments like right now when the iTune dj just kicked on some 'dead.  "Greatest story ever told" to be accurate. 

The 'dead is just what I need to continue my slow flow into the morning. 

After my morning constitutional and some rich, dark decaf Peet's coffee, I finally inspired to turn on the computer and put on a little music.  Four days to re-energize.  My legs have stopped charlie-horsing.  Fingers obviously functioning a bit better.  I probably have enough energy to use a gas pedal. 

But no need to do anything but rest for another day.  My body is still healing. Today is Saturday and although I would love to attend the farmer's market I am not ready, physically.  I will watch some football.  Do some WSJ crosswords.  I wrapped up my book last night so will wait until I return home to pick up a new one.  A few chores will keep me moving and stretching a bit.  But not too much. 

BOUNDARIES - a most important word in terms of multiple sclerosis. 

Define them.  Set them.  Review them.  Be flexible but firm.  This is your health you are talking about.  These boundaries are for you.  They aren't for friends or families, no matter what their sob story is.  This is about you.  About me.  We have to take care of ourselves.  There is no one that knows you better than you.  Repeat after me:  I know my Self better than anyone.  I am in continual communications with my Self.  I am a my own best friend.  

Stay on that soap box! 

I'm off to eat something.  Famished actually.  A good thing. 

Four days up and Four days down - That is MS

This has been my longest down time in awhile.  Four days and I'm just coming back to normal.  Having a cold/infection of sorts isn't helping.  I'm taking antibiotics for the first time in some ten years.  Not sure if it's doing the trick. 

I'm house-sitting and off the wifi for now.  It's giving me good time to rest and read.  Current read:  The Girl who Played with Fire. 

Still in an emotional funk but think that it's just the way life is for me right now.  I'm not strong enough to go ride yet, but next week should be better.  I don't feel like I have the strength to drive yet but walking is getting better.  At least the legs are moving in somewhat of a coordinated fashion.

Yesterday was caloric intake day for me:  stouffers lasagna, spinach souffle, cheese and chips and carrots and stuff.  I dropped near 8 pounds last weekend and need to rebuild. 

In fact - I'm off to read now.  My hands aren't really working that well and neither is my eyesight.  Heck, not much of me is working right now.  I better make some calming tea and do some meditation.  That will center me.  Yoga and meditation.  And the book.  I will be better soon. At least able to ride soon.  I hope.  This isn't fun. 

Multiple Sclerosis beats my clock

OK.  I give.  You win.  For today and for yesterday.  But not for tomorrow.  Well, maybe tomorrow but not the rest of my life.  I will give you today.  For now.

But MS, listen to me, you will not conquer my life.  You are the catalyst for me to be strong.  Because you, MS, are weak.  You are a pathetic weak variation of some cultured illness that one day will no longer be listed in our dictionaries. 

I can already feel the change.  The strength coming back into my legs that you so viciously stole from me yesterday.  Of course the physical abuse to my legs, liver and lungs this weekend was enough to put anyone in the hospital and I graciously appreciate your kindness as to not allow worse suffering on my part.

I will be off line for a bit as I take some RR.  Not sure - it's the fact that I'm going to a place without wifi so not sure what my accessibility will be.  At this time I cant drive.  My legs are much to weak for such exertion.    

I took some meds, double-dosed my ShenTrition and used a cane to walk the dog.  More on canes later.  It's been a challenging day but I am moving along OK.  We'll see.

How to ruin a set of legs in three days flat

Day one of family reunion.   Notice - legs are in tact while hanging at the Cracker Barrel

Legs still in tact but dancing has yet to begin.  Day three and counting.

Sure fun!   So here's my excuse.  Countless hours on the dance floor. 

No legs today but Monday is my weekend so I don't mind one bit.  Time to enjoy, relax, rejuvenate.  Ahhhhhhhhhh.

But now it's Tuesday and I'm tired of it!   Give me my legs back STAT!

MS can be emotionally destructive

I lost it the other night.  Just cried my tears out.  I was so frustrated and all after an incredibly wonderful weekend of family celebration.  But sometimes people just don't understand the disease.  Especially those that are closest to you which is why it hurts so much.

"why don't you just work.  just move.  just get your life back.  just do this..."   they really don't understand how debilitating multiple sclerosis can be.  Oh, "just go for a walk".  I mean WTF?   I would have to use a walking stick today.  And still wouldn't make it down the street. 

My fault of course.  Three days of parties, celebrations, wedding and dancing.  And the flights, the traveling, the energy-zapping family dynamics.  I am worn out.  And sick.  I need to go see a throat doctor. I thought it was getting better but it's not.

Frustration. That's the feeling that suffocates me. 

But alas, my venting is helping.  That or the meds I took this morning.  Am drinking throat coat tea and just massaged a mass of cooling gel on my legs.  I'm working on downloading photos but running out of hard drive space. 

But it's nice to be able to work on the computer a bit.  My hands cramp so much that I can't be on the keyboard for too long at a time. 

On a different and much more positive note, I just finished Rhino Ranch by Larry McMurtry.  A fun read.  Just what I was in the mood for.  I feel a bit for Duane.  My life and his. 

I know I will feel much better tomorrow.  Today is tea, ShenTrition and rest day with my hound dog, Ellie. 

couldnt walk for two days

I couldn't walk for two days and it serves me right!  rode horses hard, 100 degrees heat and more.  miss everyone that has given me support.  Love YOU! 

Take this Multiple Sclerosis and shoot it out the window!

I'm heading to Texarkana tomorrow for wedding and family reunion of sorts.  Wahooo!    It will be a blast.  Lots to do.  Lots of photos to take.  People to see.  Parties to attend.  It is all good.  And best of all - almost the whole family will be there including my sista and bro.  Unfortunately some can't make it but it will be a hoot. 

I had enough of this insipid disease today.  I stayed in bed like a good girl.  I stayed off the ponies.  Remained in A/C and rested my worn out body.  My obnoxiously worn out body.  But I got it done!   What exactly?  just a bunch of stuff that needed doing. 

Cleaned the closet, reorganized accumulated possessions that I left behind during the fire but seem to want to keep now, in my little one room/office.  Interesting with MS how its necessary to follow routine.  Especially when I am extremely sick, I don't remember to do things.  If I can stay in order.  Put things back where they belong.  Not say, "I'll do it in just a minute", but rather, "I'll do it NOW". 

Of course with MS you can't always do things NOW.  You have to do them when your body and mind are ready.  And sometimes that isn't on My schedule darn it all!  

But then again, sometimes it's a good reminder that we are all human.  Our time here on earth is so precious.  How can people ask what the secret of life is when we have so much right in front of us? 

Succombing to MS and holding on to your Self

Egos.  Dignity.  Often heard in this modern age to let go of such things.  And not until we are free of these emotional strongholds will we be whole.

But maybe I don't want to be whole.  Maybe I want right now!  I don't want to feel 80 years old at 42. I want to go riding today but I had to opt out.  Canceling my opportunity to ride will put me in a foul mood.   And it did.

My body is aging so fast with the MS.  I'm physically worn out and this heat isn't helping.  I overdid on Saturday and even yesterday was too much.  My legs are still burning.  Cooling gels are being applied.  Yin yoga to come soon.  

After some seventy pages of McMurtry's Rhino Ranch this morning and some morning medication, I'm adjusting to the mood.  Cramps are not helping but those will be gone shortly.  At least I have them.  I'm alive.  That's a good thing. 

Yesterday my hands were cramping such that I couldn't work on my photography.  I have so many ideas and projects and my body is letting me down.  Of course the more I push the worse it gets.  But man, I am not good at sitting back and chilling.  I will need to tomorrow as it's a travel day.  That will be good.  I can take some relaxing medicine and chill on the plane with family, a good book and my iPod.

Oh, and here we go, a reminder I couldn't ride, had to admit it in a text message and now the tears are flowing.  Why can't I just be happy for being alive?   I get so frustrated.  I dislike being leashed in.  I walk with Ellie.  That's what I need.  Unleash us all and get some fresh air.  I can at least walk to the bottom of the street without a cane, I think. 

I am already feeling better.  The cathartic relief of journaling.  Nothing new there but at least maybe my babbling will help others understand the daily ups and downs of multiple sclerosis.

Lots to do today.  I will rebuild my energy (darn why didn't I call sooner about my Shentrition?  I don't think it will get here today -my bad).   And I will be back.

Tired, moving, energizing

The heat is catching up with me.  But much better than in the past.  I rode a couple ponies today.  My legs felt like jelly.  I slopped all over one horse and I'm lucky she didn't toss me.  I was so close to goosing her.

I'm leaving in a couple of days for Texarkana.  Family wedding - should be a hoot.  Hmmm.  Had a lot on my mind earlier but it seemed to have escaped me.

Found an interesting chicken recipe with lots of spices in it.  Since several of us are fighting colds the added cayenne and vitamin C will be beneficial.  I don't need the heat the pepper will bring with my already inflamed MS body but I think a good push will be good.  Flush this stuff out of me and move on.

And I need a good soaking.  A massage would be great but I will gratefully settle for a soak in the tub.  

The bell has rung.  Chicken is done.  More later!

MS today

Yeah, I was wiped today.  completely wiped.  I knew the extra couple of hours in the heat, sweating, would pay it's toll. But oh how it was worth it.  I got a great ride in on last Saturday:  trail, field, arena and jumps all on the same horse.  He rocks. 

My MS - what a day. I woke up, read some Baldacci, and then prepared for the day. My legs were gone. Spent.  I might as well have run a half-marathon yesterday and kayaked Redsides.  My body is gone.  That is MS.  Steals you of strength and spirit. 

I need to remember that Monday is my Saturday or Sunday.  My weekend. I'm spent. gone.  done with. adios.  But still, I rev up to get through the day.  I want to spend the day catching up on laundry, email, cleaning and such.  Honestly, after I ride each day, I'm spent.  By noon.  No more.  at Least a siesta at 1 or 2. The Mexicans understand hard work.  We are spoiled here. 

I miss the country roads on horse back.  It might be nice to bring a horse up to the property.  We'll see. 

Take care.  More later. 

Sunday with Multiple Sclerosis

This weekend rocks.

I prefer not to have too many expectations. I can't. Or better said, I am learning not to have expectations. Mostly due to my multiple sclerosis. Life has become a continuum of randomness.

For example, on Friday evening, during a lovely and entertaining dinner party, my body started cramping and seizing. I had to stand up. The tension of sitting on the dining room chair was intolerable. I really just needed to go home but couldn't. I wanted to go to the car and sleep. I crashed hard. One of those days that would have been better to stay away from the wine and enjoyed a nice Orangina. But darn it all if it wasn't a beautiful dinner of fresh caught Alaskan halibut, this mushroom sauce that was some form of white velvet and carrots with ginger that tingled the palette. Other food as well but how could that not be served with a pinot noir cooled by the Oregon coast?

Saturday rocked a different world. I went to the barn but wasn't sure if I had anyone to ride. I lucked out. My little guy was free. We played for over two hours. A quick trail ride, trotting and walking in the field, arena work and some fun jumping. I do miss the jumping. I miss training the jumpers and having students. Not many, just one would be fun. I could really help out the program. Some see it and some don't. It's very interesting. But the main point is that I get to ride and the motion from riding is invaluable to my health.

And I pushed it hard yesterday: riding over two hours in near 100 degree heat. And it felt so good. The heat rising through my body, the menthol creme on my legs later, the eighteen gallons of water I consumed... I need to get some electrolytes. That would be good for me. Oh but wow. What a day of riding. I felt like I rode four different horses. Then came home and did some water therapy. Yoga was involved earlier in the day. The Oregon Ducks won and they were on television.

And if that were not enough to make my smile last, I had a giant German feast at a friends house. Grilled sausages of all sorts, spaetzle, salad, green beans, chocolate mousse, red wine. New friends, great food, lots of chatter. Beautiful sleep at friend's house with giant screen door and lots of fresh air all night long. Early morning return to home, time to catch up on some writing and to analyze the body.

My body is a bit beaten up today. The hard ride yesterday and the good fun last night have caught up with me. Time for a salt bath and some menthol creme for the legs. Shentrition for my body. Yoga for my soul. And then going to church with the family. Family time is always good.

Maybe some detox tea is in order, when I get home. Am feeling a bit toxic. I wouldn't light a match near me right now. We did have a bit of fun last night.

OK, off to get healthy and deal with my MS for the day.

Take care and be aware!

Hot weather, Horses and the Rhythm of the Oaks

It's getting hot again. Always good for the MS!  I wasn't paying any attention to the weatherman, which is highly recommended when one is hypersensitive to heat such as I.  

With the increasing heat I will need to get an earlier start with the horses.  But my morning yoga/meditation was greatly appreciated and a necessary habit to reacquire.  Today was pretty good.   Yeah, it was good.  It's just the heat and PMS/hormonal change has magnified my MS and I'm a bit off kilter.  The horses were awesome though which is great.  I didn't do much with K-girl.  She's so ouchy.  And no need really.  I'm not keeping her as much as I would if I could. 

No that's not true.  She's too old to be that green.  I was more impressed when I thought she was three years old.  But heck she could be seven or so and just saddle broke.  And I tell you, she humped her back the other day when I got on her.  I thought she might want to buck me off.  If she wasn't sore she probably would have tried.  At least it's not a long fall.  Too green for that any age beyond three.  It could have been due to soreness.  I think she's just in pain. 

I'm a bit beat up to be falling off horses.  I doubt my neck could even take much more.  I tossed the MRI's.  They looked horrid according to the neurologist. 

All I really need is to trot around and feel the rhythm of the oaks.  Ahhhh.    The Rhythm of the Oaks.  That's what we need at the barn.  A new feel.  A new rhythm.  A Rhythm of the Oaks. 

Morning MS - Time for some Yoga!

Another morning and it's beautiful.  Yesterday I did some stretching and meditating before riding and am off to do a bit today.  It's so necessary for my MS.  The yoga work is crucial.  I've taken about a month off and that's too long for me.  But now it's back in habit and that's good.  It helps mostly with my nerves, patience, anxiety and overall strength.  There are a couple of deep working moves like "Bear hug" for the shoulders and "pigeon" for the hips. Both areas where I hold much tension.  Heck, I hold tension everywhere. 

I started yoga in Oregon some 15 years ago.  You couldn't really tell by watching me as I'm not very advanced but it is the medicine I need for my MS.  During my last visit with my neurologist we noticed that my balance was a bit off.  Now it had been 100 degrees all week and I had been riding in the mornings so really doing much more than I've done in the past, but by noon I was so weak and tired.  In order to ride earlier I had given up my morning stretching routine.  Bad decision but one I made.

Yoga has been one of my saving graces with my multiple sclerosis.  I know just enough that I can work a few routines.  I found much needed guidance with the folks from Shen-Life when they ran their "Wholisti Center" studio in Montrose.  From ShenTrition, to detoxing teas to yoga routines to meditation.  These Chinese medicine based doctors have provided as much help for my MS as my other doctors.

Shoot.  Gardeners are here.  Back later...

Feeling burned

I'm feeling burned in several ways.  Regenerating in others.  There's enough green on me to keep growing.  I actually thought that Buzz would come down from the fire.  It's been five years since we separated.  And I actually thought that she might reappear. 

17 March 2004, the worst day of my life to date.  I lost my hound dog, Buzz.  And I would talk about it but I've cried enough today. 

Or so I thought.  I just found out that I offended the one person I love the most with my blog and it's only the first month.  So here I am, crying again. This blog is about me.  My struggles with MS.  And here's a good one.  Sometimes when the MS acts up it puts the emotions on a roller coaster and right now they are way high.  Or way low is a better way to put it.  So basically I'm an emotional mess and have been all day.

What's the date?  Ah so.   PMS.   Which really stands for P____   Multiple Sclerosis.  I don't know what the P stands for but something like "magnified".   MS is the worst during pre-menstrual cycles.  Something to do with hormones. 

I would like to stay home tonight but I think after my last mistatement I should just keep my mouth shut.  I'm tired.  MSie all the way.  But it will be nice and an early dinner with the folks.  I do like my dinner with the folks. 

more later...

An evening with MS

Actually this has nothing really to do with MS.  Except for the fact that I'm losing use of my fingers, thus time to go to bed.  But, made a healthy dinner of wild caught Alaskan cod, corn, cabbage, heirloom tomato and basil salad, asparagus, avocado and...  Well.  Maybe that was it.  Because it was a heck of a lot of food. 

The redtails fly over the scorched hillside across from our deck.  The contrast of colors of bird against landscape is quite remarkable when once they would fly quite camouflaged.  I grabbed my camera but didn't get a shot. 

OK, finkers, fingers, are shot.  Time for bed.  Hot noddy in hand.  Heading westside.  See you tomorrow.  Open the windows.  Listen to the hoot owls.  Sleep deep. 

Talk about an accident waiting to happen...

I had a great night sleep.  Worked on some fun projects last night - a photo collage for the kids at the barn.  I woke up feeling great.  Been taking some medicine for my throat and feeling much better.  In fact, better take some right now, with a big glass of water.  Just a sec...

Ah, much better.  OK, weird day. I don't know what it was/is.  Horses were feeling brisk, definitely fall is in the air.  One of mine was about to explode so I turned him out.  Turned several of them out.  An early fall.  Possibly an El Nino.  Let's not due to the mudslide factor, not that we have any say in the matter. 

But back to the riding.  I was so psyched to get started today.  I was wanting that motion.  But then I just felt off beat.  Out of rhythm with myself.  If I rode I was coming off for some silly reason or another.  I don't often have bad days but I even lost my cool with one of the horses.  Time to get off, turn out the horses and enjoy friends for lunch under the oaks. 

Now is this an MS thing?  or just one of those days.  It honestly feels like "just one of those days".  I have been eating healthy.  I think the medicine is working well as my body is completely different than yesterday.  I'll find out more at the doctor on Thursday but I think the throat was related to the cold sores I get some times.  I read that the herpes simplex can go into the mouth and throat.  And my upset stomach is gone. I may not have mentioned that before but it felt weird.  I should know:  take the acycliver.  Its interesting how the herpes and MS go hand in hand.  Flare ups that is.  Warnings better yet.  If I get the slightest tingle of a cold sore I know I need to change my routine or my MS will flare up.  Interesting...

MS creates hurdles that we can overcome

Granted, this photos is some fifteen years old, but the process of jumping hurdles is the same as it is with the MS. 

Size up the situation, approach it with thought and consideration, and let the rhythm flow. 

Pozole heals MS

OK, Maybe the pozole won't heal my MS but it sure went down nicely with the fresh cabbage and radishes on top.  The flavor wasn't too hot as I mild it down for my folks using about half the spicy ingredients.  But it did the job and I fell asleep sipping a hot noddy and watching Family Guy.

Talk about lack of control - I just found out that Pepper is not coming next week. May not ever come or ...  That's OK, I have enough to ride as it is.  Actually I would love Ty to get on and rider her some. That would be great.  It just was a bit frustrating.   And I blame all of my frustrations on my MS when that shouldn't be the case.  Or doesn't need to be the case.

Well, whatever the case is, I am off to the barn to play with my pony.  I have two weeks to figure out how she can earn her living.

I made a doctor appointment on Thursday to check my throat. It just doesn't feel right and I've abused it over the years.

Of course I'm concerned.  It doesn't feel right and I can't blame MS on this one.  Maybe the pozole will heal my throat as well.  But for now I need a little mind healing.  Some play time with a pony.

The hound dog gets to come with as it's quite cool out.   A good day for all.

catch you later...

Julie, Julia and MS

Nutrition - one of the top five medicines for Multiple Sclerosis.

Everyone has an opinion.  I go with what works for me.  In addition, I studied and became certified in holistic nutrition education from Bauman College in Northern California.  The awareness my studies brought me continues to play a significant role in my health and well-being. 

Tonight it's Julie and Julia with MS.  So, what did I choose?


Not your typical MS choice during the summer as it's a bit warming but let's look at the benefits:
  1. The weather is much cooler today, my body isn't screaming "cold shower"
  2. There was frozen pork in the freezer that needed using
  3. Jalepenos, though warming, are high in Vit C and other nutrients - good to cleanse out the sinuses and they are growing in the garden
  4. Radishes - excellent kidney cleanser and tonic.  
  5. Hominy - how comforting!  and nothing wrong with that. 
  6. Cabbage - cleansing again and easy to get at farmers market right now
  7. Because I've been craving it and sometimes it's good to feed the beast.
  8. It's Sunday.
  9. I've worked hard all week
  10. I've eaten cooling and healing foods all weekend.
Since I still feel guilty about eating Pozole I'm doing some research to negate my own fears:

Chili peppers/Cayenne Pepper:  aids in digestion, improves appetitie, stimulates secretion of salivary glands and gastric juices, blood circulation when used topically, and helps with frost bite, rheumatism, and lumbago, according to:

Pork:  Neutral, sweet and slaty: used to lubricate dryness; affects the spleen, stomach and kidnes.  Good for diabetes, underweight, dry cough, constipation.

"Chinese Natural Cure; Traditional methods of remedy and prevention" by Henry C. Lu.

Radishes:  "Cool; pungent and sweet; affects the lungs and stomach; detoxicates; downwards movements; promotes digestion and elminates hot mucous discharge".  heck - I'm going to grab some now....Just a second....ahhhh, much better. I just chowed three or four.  Then coughed up a big ugly mucousy thing.  Never mind that.  I'm trying to cleanse out my lungs and throat.  They are a bit rusty after the fire.

Check this out:

  • Drink fresh radish juice to relieve intoxication.  Gotta like that one!
  • Drink fresh radish juice mixed with ginger juice to cure laryngitis.  
  • Regular consumption of fresh radishies prevents common cold, flu and respiratory infections.
  • Good for coughs, asthma and indigestion.
So there are a few reasons to make Pozole. And oh does it smell good!

There are many recipes.  I tweaked a version I found on Recipezaar.com, where I have some recipes posted.  Didn't know I could cook?  Just a bit and nothing fancy.   Mine are listed under Farmgirl.  You will quickly notice that I have several identities.

Pozole Recipe from Recipezaar

Farmgirl's Recipes

And then I opened Paul Pitchfor'ds "Healing with Whole Foods" - a must have for any one interested in modern nutrition.  That will probably come another day.  I'm tired.

On another note, I need to make an appointment with my ENT tomorrow. There's something funky going on in my throat. I don't blame it - it's been through hell.  I just hope it isn't too late.  It needs some major TLC.

Take care - Eat Pozole!

out of control with Multiple Sclerosis

What a morning.  Walking with the ol' hound dog and I break down in tears.  What do I have control over?  Everything from horses to when I eat to feeding my dog seems to be controlled by someone other than myself.  I know it's healthy to let go and I don't understand why I'm so angst ridden over it but maybe it's because the people making the decisions are often incompetent.  All my dog needs is to be on her basic diet.  That's it.  She doesn't need tons of treats.  If one wants to overeat themselves into a coronary then let them.  But leave the animals alone! 

Whew.  I need to relax.  find balance, like this sea lion in Galapagos taken by Tom Selsley:    I was unable to snorkel in Galapagos as my legs kept cramping when I got in the water.  So I decided to be safe and stick to land. Didn't want to be an accident for a guide or cause harm to others due to my ignorance.  I deemed myself quite fortunate to have been able to enjoy walks and adventures everyday while in the Galapagos.  And that's what I nced right now:  balance, enjoyment, laughter, breathing:

Morning MS

You are probably wondering about Doodles and LeLe if you read yesterday's post.  They will play a bigger role as we continue.  Sometimes it's easier for me to understand MS if I put it into another character or person.  In other words if I can assume that LeLe is me and I can manager her MS from the outside as well as the inside, well it just helps manage the disease.

But for now it's Sunday morning.  A nice quiet morning with not a lot on my agenda.  Which was my plan.  Sundays and Mondays are my mellow days.  I will go to the barn to see Kalua and take some photographs. Not a lot to ride right now so it's easy.   Of course I have my many projects that I want to accomplish but that again is part of my MS:  keep myself full of projects so that when my mind and body are ready to get to action I have something productive to work on. 

I'm still having some over wrought emotional issues but they will fade.  I know I've done the right thing on various levels and now it's time to breathe deep and relax.  Nothing more I can do.  Enjoy life.  Find new things to enjoy.  New friends.  New horses.  New adventures.  

I think I'll take little hound dog on a walk.  It's amazing what a little fresh air and exercise does to those with MS, dogs, and everyone else! 

Have a great day and remember, MS can be a state of mind.  Be strong.  Live strong.  Visualize how you want to live and keep the focus. 

Doodles and LeLe

Doodles and LeLe have both had major life changes these past five years.  One lost their best friend of 25 years.  One got sick with multiple sclerosis and lost her identity.

LeLe enjoys her sweets

Doodles and LeLe enjoy healthy activities together 

And sometimes not so healthy activities

But all in all they have a healthy friendship which is very important for both to grow through their life challenges.

A day to have and to hold!

Time to play hooky. At least for the morning.  Cow country.  God's country.  Good music.  Great friends. 

And what a much needed holiday it was!  Amazing what just a few hours of ranting, venting, driving can do. I could feel the tension leaving as we drove through the valley and over Santa Susanna Pass into Simi Valley.  Then I breathed deeper when we reach the 118 and farmland.  The visual stimuli.  Slow driving.  Casual.  Sight seeing trip.  And then the blue to the west of Highway 101.  Beautiful scenery for heavy discussions about personal lives.

I'm not happy.  Despite all that I have going for me how can I be so spoiled to want more?  Was it Streisand who said, "I don't want much, just more".  But alas.  I'm lonely and missing part of something in my life.  I thought I had it last fall but I was fooled.  I am happy with what I have but let's face it, going to bed every night by myself at forty-two years old is not how I envisioned my life.

On the evening before our road trip I sent a somewhat childish, angry email to this man that I dated briefly last year.  I really thought we had something special and then felt like I was taken for a ride.  So I sent this email.  Short, to the point.  Of course I sent it after a good stiff whiskey.  But it felt good.  I'm often too nice and don't express the true emotions of my feelings.  I was really hurt by this guy and felt like I hadn't really said it. Maybe I had. I told him this is that I like him too much to see him casually.  Or at least that's what I meant.

The ability to express my feelings freely is a part of my wellness program with multiple sclerosis.  When I do not express myself clearly the anxiety rises rapidly within my middle.  I don't breathe properly.  I am not relaxed.  Oh darn. There he is. That man!  In my mind.  I shouldn't even have contacted him.  I thought I could handle it.  Wrong.  I fell so hard for him. And heck. Nothing I can do about it. 

 It is very frustrating to fall for someone who just isn't that into you.  Hasn't happened in a long, long time.  I feel like a junior high kid.  I can do better.  That's it.  I can do better.  

Attitude adjustment:  time for some Jason Mraz.

Now back to the MS.  Oh yeah, isn't it amazing how much MS is affected by emotions?  Sometimes I feel like everything is magnified ten-fold.  I just start crying.  Something sad, and I think my life is horrid.  And I have a great life.

One emotion that hit me on the road trip was that of feeling ashamed.  I didn't realize it until my friend said it.  After I recovered from the slap in the face for not thinking of it sooner I realized, yes, I am ashamed of my life.  Why?  I'm not exactly sure but am leaning toward the fact that I am not supporting myself. That has always been important to my identity. I never wanted to be "someone's wife".  I wanted an identity of my own and one that I could financially support.  I had it.  I lost it.

Time to move on.  Another issue that came up during the drive:  I'm tired of my story.  I need a new one.  Something new.  Horses are new but I'm in a rut.  I don't know if I'm holding myself in the rut for various reasons but I don't know why else I would still be here.  I'm usually a happy kid.   But it is time for a new story, a new identity:

MS blogger
Horse trainer

Do I need more?  Maybe not.  But what about the marketing, design?  I don't know if I want to do it.  I'm a bit tired and want to just work on personal things. I spent so much money and time last year doing all that photography work.  I'm burned out.  Between school at the Art Center and the Art Shows, I'm ready for a period of no deadlines for awhile. And not too much production work.

I am being too hard on myself but that's typical.  It's September 11, and I've done more this summer than the past eight summers combined.  I should be celebrating not brooding.  Our house didn't burn.  I have healthy friends and family.  Folks have given me a beautiful horses to ride.  I have my health and a great old hound dog.  Even got a flu shot today.

So -
I'm ashamed of my life 
I'm going through an identity crisis
I'm not happy

Time to make some changes.  Watch this spot.

MS this morning

I'm a little more MS-ie today than usual.  Had a pretty mellow day yesterday.  Got my nap in and went to memorial service.  Had some wine, good dinner and a little whiskey when I got home.  Worked on some fun projects last night - just really some good e-surfing and stuff.  My legs feel OK, not too crampy.  Had a nasty taste in my mouth this morning.  Better double rinse today. 

I'm a bit out of rhythm today.  The horses will fix that.  I don't know if I have any more than one to ride today.  There hasn't been many on my list lately.  All I want to do is ride.  Riding is critical to my MS success.  But it doesn't have to be riding for everyone.  It's the movement.  The physical activity.  The emotional connection with the horses.  it's a hobby.  A focus.

Everyone with MS (and without) will benefit from having a hobby to focus on.  I noticed when I was photographing the Galapagos that the heat didn't bother me as much when I was focused on getting a certain picture.  The focus helps me get through the moment of discomfort.  BUT, it means I have to be doubly careful afterward - that I rest and take care of myself and not continue to stay focused on activity or I will wipe out.

I'm also a bit emotional today.  I am most frustrated when folks don't understand my MS - many folks do, but men mostly, don't (relationship type men).  Maybe that's why I'm not in a relationship.  who knows.  Another time.   Now it's time to ride!

MS - the distraction

MS is a disease.  It's a distraction.  Multiple Sclerosis.  I get it.  Many scars. But what a name for those who often lose their ability to speak or enunciate.  That is so annoying!  I can see the word but can't get the lips to say it right.  and then try to say Multiple Sclerosis.  Heck.  And MS?  nobody even knows what it is.  I didn't.  Unless you know someone with the disease it's difficult to remember all of these many idiosyncratic diseases.

And here's for distraction.  I noticed with my MS is that sometimes I absolutely need time for me.  Maybe that's why I never really considered myself to have children.  I know I need time for me to be healthy.  Sometimes my housemates don't quite get that.  And I'm sure I'm just as bad in reverse.  Sometimes though, I just want some quiet time to write and chill.  But then, be careful for what you want, because quiet time around here could mean that something catestrophic happened.  And I don't want that.

I'm want what I have right now.  How often do you get to say that?

content.  desire for a bit more.  pleased with the past.  embarrassed at times.  fun most of time.  god bless~

MS is inconvenient to say the least

I had great intentions of getting some additional projects worked on today, but alas, another nap.  The exhaustion that comes with MS can be so inconvenient.  My body is on a "healing" mode and has slowed down.  I must listen and abide to it.  The body.  You can't fight the MS.  But you can try and that is what one does with all of the western medicine for the disease.

Most of the 'medicine' is just a band-aid to cover up the disease's effects.  I tried so many anti-fatigue drugs such as provigil and couldn't stay healthy.  I kept getting skinner and was dry-heaving all day long.  My MS gave me a sort of gag reflect with food.  Which was fine for the first few pounds but when you could count every bone in my body, that was too much.  My neurologist was threatening to send me to the hospital for anorexia.  I just wanted to calm my system down enough to eat.  and not throw up.  That was when I tried THC for the first time as a medicine.   And OK, things are going to be different from now on.

Over time I found that the majority of my symptoms could be controlled when I found a better balance between my physical, spiritual, mental and emotional cornerstones of life.   There are several part so of my treatment that are necessary to my success with MS:

Friends and Famiily
Medicine/Alternative/Herbals for your needs
Fresh Air
Mind stimulation
Hand eye coordination work - roping, fishing, golfing
Mind eye coordination work - i.e. typing, computer programming, art, etc.
Stress-free living
OK - getting off track.

off to a memorial service.  Take care - remember.  MS is a state of mind.  I'm in a low one right now but will come out of it.  I'm feeling a bit trapped but am playing hooky in a few days which means a road trip to Los Olivos for wine tasting and picnics and beautiful views.  Ahhhhhhhh.    That is what My MS needs!

Stop on Spot and slow down

Originally uploaded by nonisense
Sometimes you just have to come to a stop and slow down (meet Spot - 4 yr old gelding). Right now I'm riding just enough to get the motion and movement but not enough to overheat and overdo.

It's a daily balance of integral therapy as I'm learning. A whole new study to take interest in. The balance of physical, spiritual, mental and emotional. Makes sense. The cornerstones of our lives.

I was reading earlier - but my vision got a bit blurry. My vision is one of the first to go. And the hands when I'm typing or writing. The fingers will just collapse a bit. Done. Like right now. I've been trying to hook up the blog to flickr, etc., and there was some discussion with the software. But now, time for catching up on news and whats going on out there.

My sister was here for a bit today which is always a treat. Family and friends - my greatest assets. My dog of course. But when you are illin' there is nothing better than family and friends.

Fingers failing. Off to water the plants, if it's our day of the week (three year drought).

Baaaaah humbug

Originally uploaded by nonisense
that's me right now - bah humbug! wouldn't mind taking a nap. Feel like I need one. Body worn out. But good friend, sister, is here and want to play. Isn't that often a big problem with MS is finding a balance with energy and demands? Wishes and desires. Abilities and frustrations. But this little Icelandic sheep, Oyster, makes me smile. Such simple animals yet providers of much.

Off to take a small walk. Get the blood flowing after a huge salad lunch of this and that. I will have to post some of my recipes. I have some good ones created.

More later, take care, enjoy life!

Horse, MS, an infuriating disease

So now I'm thinking of starting a nonprofit that works with horses and MS.  A way to afford the horses and to ride and to help others and to stay healthy.  I'm not exactly sure how it would work but if it would allow me to share my knowledge with others and to help the cause then that sounds pretty darn cool. 

Sometimes it's the loneliness I feel that is somewhat caused by the MS.  A small depression in my otherwise happy existence.  I can't live my normal life.  I can't keep up with many friends and folks my age.  My dear friends accept this and adapt.  New friends do as well.  Except on the partner front.  They still don't ever seem to get the needs I may have no matter how kind or sensitive they are by nature. 

MS is a difficult disease to work with.  Let's face it. I don't look disabled.  But everyday is a challenge for me.  What can I do today? 

Today I am down.  My inability to drive beyond city limits is exhausting.  My only relief is to ride, but my pony is sore right now.  I need to change farriers, etc.  She's barefoot and I'm hoping to keep her that way, but that again is another story.  I'm a bit stuck feeling.  But that is my fault as well.  Why don't I got for a walk?    I'm exhausted, that's why! 

Yesterday was a long day for me.  Even though I rested, I pushed myself to the max.  Long, hot day.   And now I'm beat.  I will go to barn to check on k-girl.  my poor k-girl who is one sore little trooper. 

MS is exhausting and folks dont often understand.  Exhaustion due in part by the need for us to micromanage our lives in order to survive.  Every hour.  Every event.  Every darn thing in life is approached with the question, "Can I do this today?" 

And coming from someone who used to have some real life adventures, having to ask myself this question on a daily basis just to live can be infuriating.