Tuesday

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.

Monday

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. 

Friday

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! 

Wednesday

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.

Tuesday

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!

Monday

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

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!

Thursday

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...

Wednesday

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...

Tuesday

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...

Monday

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...

Sunday

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?

Pozole!

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. 

Saturday

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.

Friday

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
Photographer

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.

Wednesday

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!

Tuesday

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
Diet/nutrition
Medicine/Alternative/Herbals for your needs
Exercise
Fresh Air
Movement
Mind stimulation
Hand eye coordination work - roping, fishing, golfing
Mind eye coordination work - i.e. typing, computer programming, art, etc.
Animals
Gardening
Freedom
Stress-free living
iPods
Hobbies
hounddogs
fishing
photography
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!

Monday

Stop on Spot and slow down


spot-6375
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


_MG_8633
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. 

Sunday

Horses, Movement therapy and MS

Movement therapy.  I know nothing about it but believe in it.  Nothing calms my MS better than riding my horses.  Even just at a walk.  Or a trot.  Rhythm, balance, movement.  And I sweat!   That sounds weird but I don't have to work hard, it comes easy, I sweat out toxins and cool off my body.

I have actually been able to stay out in the heat this summer.  Granted I water down often and I'm not doing that much but compared to the last eight years.  Wow.  And sometimes I use my cooling vest from Arctic Heat.

Here you can see a photo of me in the Galapagos wearing a sun shirt over the vest in this ego-boosting article about my photography:

http://www.athleta.net/chi/2008/08/28/survival-of-the-fittest/


MS management takes into consideration all aspects of life:  diet, exercise, stress-free living, friends, family, happiness, love, life.

Heat management is one that can be dealt significantly with diet.  I ate my apple today.  several glasses of cool water.  Shentrition.  Cheese sandwich on white bread (OK, not good, but sometimes you just have to go for comfort), water, water, water.   Fruit.  Water.    We'll have chicken tonight because that's what is in the fridge.  I could grill - but do we need the added heat?  no. But will it taste good?  you bet.  We'll see.  I haven't decided.  And that's a good thing with MS - we must learn how to be flexible and not have everything planned or expected a certain way.

As you can see, I'm a rambler.  An e-babbler.  But within this babble is something note worthy to those with MS or who may know someone with MS>

Saturday

angry wildlife

I've been bombarded by liquid amber pods struck down from above by angry squirrels.  One of which scolded me for at least five minutes while I was in his or her way to get home or something.  There are rats the size of bobcats scrambling around the backyard.  I'm pretending not to notice. they just need salvation. Don't we all!

One thing above all that I have learned with my MS - salvation.  A struggle to see it but once I experienced it, I felt all good inside.

I can smell the burn now.  Still, thankfully, no winds.  Nature is doing it's thing.  And I'm doing mine.  I may not ever get to a book but there is quite a bit about MS that I want to share to help others.


So, take care of yourselves tonight!   that means light on the wine and whiskey and heavy on the detox tea.  Read well.  Breathe deep.  Sleep in peace.

Prima Dona

I was just told by one of my friends that I was acting like a prima dona.  My friend who has been in bed all day.  I have been working.  But I chose to eat twenty minutes after they did.  How dare I?!

This sort of crap makes me want to move.  I have offers.  Maybe it's time.  But I don't think so. Not yet.

Sometimes with MS you have to be a Prima Dona.  Boundaries become mand-A-tory.  Most of the folks that have MS, whom I have met, are all "go getters".  Folks that may have a few issues with boundaries.  At least I have had fault with keeping to my own guidelines.


On another note, the mountain, as I'm watching it today, looking east toward the west-facing slope of Winery Canyon, doesn't look as bad as it could.  Probably the lighting is just right but there are some oaks still standing.  Hope of some photosynthesis already taking place.  Nature's way of healing on the spot.

The sounds of sirens - eerie yet I don't think there is anything left to burn.  If our house had gone they would have taken their stand at foothill.  We would have been Palos Verdes with a lot more disasters.  Whew.

Remission or Re-management

When folks ask me if I'm in remission with my MS, I say no, I'm in re-management.  Each day has the possibility of being a complete setback if my health is mismanaged.  And I'm not that good at managing it.  I try, no doubt.  But i have my weaknesses as we all do. 

It starts with going to bed the night before, in a peaceful, quiet state of mind. I don't often achieve that so its something I'm working on.  When I get up I review my body. How is it feeling?  can I move my fingers, my toes?  sometimes I bathe and meditate.  stretch.  do some yoga.  Often I just go to the barn and ride.  Something to put me in rhythm.  Something outside that is fresh air and movement.  Some days I can't go outside, it's too hot or something, so I work on the computer.  My fingers often fail me and fall asleep so my time on the computer is taken in spurts. 

I start every morning with coffee.  If my housemates are gone I usually just drink decaf.  But if they're here we drink half and half.  I have always loved my coffee.  Sometimes it feels too dark for me and I drink tea which is more cleansing for me, but I love dark roasted coffee.  And I drink my Shentrition every morning. I mix mine up in a water bottle and take it to the barn with me.  And usually an apple and piece of cheese as well.  Seems like enough.  Eggs are good but I get lazy. 

I take some meds but not too many.  I had side effects with western medicine so limit myself to a small variety of medicinal herbs and pills along with nutritional dietary intelligence.  We'll get into that later. 

The most important thing for me right now is to take care of myself in this heat and the stress of the fire.  Time to chill my inner core and meditate.  I've been running a bit ragged lately and I can feel it.  Slow down.  Breathe deep.    Ahhhhhhhh.  

Burnt hills

All around, and still burning, the mountains char.  Makes one want to eat sushi or something cold and clean.  Too much searing going on.



Today was another blessing as the weather/air quality improved I was able to ride a bit.  It's the rhythm and affection from the horses more than anything.  Not that the horses give a lot of affection.  But at least they acknowledge your existence and understand that a good time should be had. 

I don't have anyone to talk about the horses much so you'll be getting an earful.  The only one who even understands what I'm talking about is someone I'm not super keen on talking to right now.  But that has nothing to do with MS necessarily.  What does have to do with MS is the fact that my eyelids are trying to drop on me.  My fingers are faultering.  many many typos.  Need small nap.  re-energize.

defining abilities













How often I have had to redefine my abilities or lack there of since I was hit out of the blue eight years ago with MS. Well, I say out of the blue, but if I had listened to my Chinese medicine doctors who both told me I was kidney yen deficient my life would be very different.

Even today, if I follow I kidney-yen friendly diet I do much better in the health department. But I needed the slap in the face that I received when the neurologist suggested multiple sclerosis. All I could ask was, "will it kill me". As soon as she said "no", I said who cares. I've been drunk before. I can learn to live with wobbly eyesight and balance. I can rebuild.

And alas, the symptoms slowly went away. To the point that I could walk unassisted. I still run into things with my shoulders, especially street signs and door jams, as my depth perception is not that great. And my vision is the first to go. Balance and vision.

The other day - well some two months ago - I was up in the Central Coast looking at some horses. I could feel myself tiring. Time to go. I had to drive and I was already starting to shake. My vision was going blurry. I took the side streets. Time to let myself go beyond my limits.

Limits are a critical awareness for people with MS. To say the least. I have never been good at putting limits on myself and I'm a slow learner.

Friday


The smoke is clearing a bit. Always better in afternoon since the fires have started. Different then with my MS which is better in the mornings, usually. Or after my naps. I seem to have become familiar with afternoon naps. Especially in this heat. It's been around 100 most days. The ash and smoke was bad for days but it's actually showing blue sky right now.
Twenty five years ago I had my Volkswagen packed with dog in tow. Last week it was the volvo v50 wagon. And ellie, the plott hound mix.

Several folks asked about my MS in the weather/fire, how it was affecting me. At first I thought "not bad". But I was in "go" mode. Which is when one doesn't think of the consequences of their actions and proceed with daily activities belonging to those younger and healthier. During which they may feel fine, even a bit high from the endorphins, but sure enough, 12 - 24 hours later and whammo, no feeling in the arm, vision blurred, nerves on end. Time for rest and quiet.


Rest and quiet. Two aspects in life that can be quite difficult to accomplish. I, who don't even have children, find it difficult to find rest and quiet. For different reasons. One, I am hyperactive by nature. It's difficult for me to sit still. I'm nervy. And it doesn't help when I do things that promote the nervousness (like not doing my yoga, taking my shentrition, etc.). And when I'm nervy it usually means that my MS is on the rise. The two go hand in hand. Think of urination frequency. That's a sure sign. A lot of pee means I'm not taking care of myself. Which usually means some real rest and quiet. no interruptions. No children, parents, friends, etc., except for calmness. Everything is calm. Breathe deep. Breathe deep...

Thursday

There is hope with MS 9/3/09 2:47 PM

It's been a crazy six months and more has happened than I can type. All I can say is that we can learn to manage our MS and live a better life. There are many tools out there for us! Find friends and family. Find happiness. Garden, work, play. Enjoy life.

Time to Evacuate 9/3/09 2:21 PM

Wild week. Station fire. Evacuation. 25 feet away.
Interesting to see what I packed, why I chose what I did and the emotional process of possibly losing my home.


Top 15 items of choice (in no particular order):

  • hard drives
  • photo albums
  • computer
  • camera equip.
  • first edition, signed books, grandmother's bible and more
  • stuffed animals (yes, me, including an irreplaceable womble that my mother made me 30 plus years ago)
  • hats
  • scarves
  • few clothes
  • sleeping bags
  • pottery made by ancestors over 100 years ago
  • the dog
  • medicine
  • passport and important papers
  • jewelry

The reverse 911 call came at 2:30AM on Saturday morning. We knew the call would come. Bless the fact that there were no winds. We started packing. Mand-a-tory evac-u-ation was called for at 4:30A. The sheriffs did their job politely - walking door to door. Mandatory evacuation but we can not force you to leave. Since the knock the phone would call us with an automated reminder that a Mand-a-tory evac-u-ation with the nasally emphasis on the second syllibles.

The multiple sclerosis has been quite tolerable considering the tasks of packing of a car in an emotional whirlwind while inhaling buckets of ash. The 100+ degree days of the week and zero humidity not helping. But my body held on. Even allowing me to help out with the horses a little bit during their evacuation. The staff is really good about not letting me do to much because I have that tendency, to go overboard. but then again, that's part of why I have MS in the first place. I must continually slow myself down and ask myself what does my body need? Sleep? Better food? More activity? Friend time?

I could feel the MS pretty bad last night. When I lose feeling in my arm and have pain in my body I know its a sign. And thus presenting the never ending MS question: How can I manage my MS to prevent these chaotic symptoms? I have had not luck with western medicine regarding my symptoms. So I am all about nutrition, herbs, yoga, riding, wine and whiskey. Oh, well, those are part of the mental well-being but probably could be looked at again.