Tuesday

Detoxing the Skin with Dry Brushing

 
After an evening of burgers and red wine, both inflammatory and toxic in nature, I turned to some key basic tools for sleeping better with MS:

  • Dry brushing the lymph nodes
  • Stimulating soft tissue with knobby massage groomer.


And use an All natural goat milk lotion with NO alcohol! Http://happyacresfamilyfarm.net




Our skin is the largest organ in our body. Or on it for this instance. And our skin is responsible for 1/4 of all detoxification going on with us. That's a lot to ignore. Thriving with MS is possible because we can avoid toxins or remove them if we consume them. Sometimes our environs produce enough toxins to kill several lab rats. And sometimes we ingest enough bad food or alcohol to kill a few lab rats. During these times it is vital to detox as much as possible. This includes dry brushing our skin.

There is a certain technique for dry brushing. It encourages the lymph nodes to get up and dance. And that's a good thing! Not to mention the nerve stimulation and soothing effects. No more tingling and numbness. At least for now!

 

 

 

Monday

Shhhhhh....be very, very quiet....

Many folks don't realize how sensitive one's hearing can become with MS. Here's a good article comparing the nerve damage in MS to that of listening to very loud music.

Sensitivity to sound is very annoying from an MS patient standpoint. There's only so much control one has over the loudness of others...

Check this out and learn more!

 

Saturday

Chamomile Good For MS!

Easy to make! Get some fresh chamomile flowers at your local farmers market or grow them yourselves and add a handful to some water. Let it chill. You go chill. Come back later and taste this delicate living water ready to heal what ails you.

Chamomile good for MS nerves, spasms, anxiety and more. Can be used internally or externally. I'm making an external batch out of the stems. Great for a bath soak later. I'm making a fresh batch for drinking.

I never much cared for chamomile tea. But the infusion from fresh flowers is a different taste all together.

Here's a great resource on chamomile and other medicinal foods: LiveandFeel.com

 

 

Wednesday

Ten years to discover strength in faith

Soul Surfer, the movie and book, had a profound affect on my life and my MS.

Young Bethany Hamilton loses her arm to a shark off the coast of Kaui. True story about her journey before and after the incident. Throughout the story weaves an unfathomable ribbon of faith between her and God. Through her Christianity, young Hamilton faced challenges not many of us have seen or in some ways comparable to what we've seen, just told in a different way.

At first viewing I was overtaken with emotion as this young girl faced her challenges, one by one with more strength then before. What was driving her to find a healthy and wonderful existence despite the incident? What was providing that comfortable feeling that all is right in the world? And why did it feel so familiar?

Faith. Bethany's faith in God and her Christian family and community was represented well by Hollywood but just watching this girl speak once will tell you that she is genuine. The movie may be enhanced by special effects but Hamilton is enhanced by her faith.

I remember that feeling of having a peaceful, spiritual existence between myself and God especially as a child. The relationship has always been there but never had I given my faith in God the credit it deserved. While sitting in church one day, okay maybe several times, the message was clear: Caroline, the girl with MS, get your story told. You're not getting any younger or healthier!

So here I am. My fledgling start at getting the story out.

Folks kept asking if I was scared. I was traveling through Guatemala with some friends for a month. Backpacks, chicken buses, hostels, the works! Part way through the trip my vision started going screwy and my balance was way off. Nausea hit and survival came from licuados, coffee, tea and beer. Some med students recommended that I take some nyclezene as my symptoms were similar to an inner ear infection and motion sickness. I never felt like I had an infection. Those can usually be felt or tasted in the body. I just looked drunk and was getting worse. But persevered we did and traveled throughout the country seeing many wonderful places.




The folks of Guatemala were amazing. Helpful in every way. And the tourists. We would see the same folks across the country in different towns reminding us how small this country really was. For a few days I was on my own. I was deteriorating quickly. Staying in the quaint town of Livingston on the Atlantic side, a crab jumped out of my backpack. Unable to focus I climbed up on a chair in the corner of the room and watched it swirl around as shades of vertigo went through my mind.

The crab eventually wandered off. Then came a knock at the door and friends from around the world whom we had met would come and lead me to the licuado stand. Walking unassisted was becoming the norm.

As I was leaving the country, wall-crawling along the airport for balance, the sudden reminder flashed by that Guatemalan chocolate was requested by a family member, in honor of the Johnny Depp movie, Chocolat. Handing my last few quetzales to the merchant and slipping my chocolate in my bag, the comment "Americanas y drugas son loco" made me realize how bad of shape I was really in.

So, I hopped on the plane and headed back to Los Angeles. Interested to see what will come ahead, but I was never scared. Deep down I knew God would have the answers for me. I didn't realize this strength came from my faith and a loving Christian family and community until I watched Soul Surfer. Talk about a slap in the face after ten years of this disease. Doh!

 

 

Saturday

Hints for having a rockin' MS day

It doesn't hurt starting with a sun-shiny day. One of those Southern California October days.


Just warm enough to hang a line of clothes out but cool enough at nights to feel that fall is here. I'm always washing bandannas but let's admit it, they are about one of the more useful tools around: lunch carrier, sweat-mopper-upper, instant cooler-downer when dunked in ice water, napkins (let's rid ourselves of disposables!). But these days I'm happy with enough sun and warmth to line dry some clothes.

Next comes some time in the garden and kitchen, slowing down, thinking about fall planting, blending herbs and butter. Lots of butter.

Today we had an abundance of tarragon and some fresh fennel greenery. We added it to our swiss chard, garlic, butter, carrots and chicken mixture. No need to add meat unless you're a meat eater. Just put lots of stuff from the garden together in a sauce pan with lots of butter of low to med heat for a long time. just simmer away. Go do something. well, don't burn down the house, but literally, let the veggies just soak up the butter and flavor.
I use special chicken and stock that my mom makes for me. Yum. But all in all, just add the six-bean mix from Trader Joes and some left over pasta or not and voila, a tasty soup for the Fall.
I ate my soup with a big salad of cucumbers, tomatoes, feta cheese and pine nuts. Some lettuce greens. Vinegar and oil. I'm sure you can make this lo-cal or something but that's not the point.
We are cooking off the farm and butter is handy.
Hints for surviving MS:
Enjoy sun-shiny days
Eat fresh food
Soup. Never underestimate the soup.
Pine nuts - good for kidney yin
Cucumbers - cooling food
Grow your own food, even if it's just one plant!
Love the land we live...
 

Survival of the Fittest

Sometimes it's nice to think of what can be accomplished with MS, especially when one wakes up not feeling oh so great.  This article is a few years old but was an amazing time in my life that I shall not forget. Sometimes these memories help make me stronger. I'm not living in the past,must reminding myself what can be done...

Survival of the Fittest

SURVIVAL OF THE FITTEST

Team Athleta • Aug 28th, 2008 • Category: Adventure TravelCustomer 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

Spa Water...Spa day

Starting off the day with some spa water is a refreshing start for this Girl with MS.

And chamomile flowers are available at farmers market! Try fresh chamomile flowers and lavender in filtered water. Sit in sun to soak. Chill and enjoy. It's refreshing and cooling on the nerves.

It is often the little things in life....

 

Tuesday

MS friendly lunch

Cooler temps today prompted a nice walk with dad. Decided not to ride because weather app said warmer temps near 80. It was only 70. But my body said slow down and slow down I did. Don't question it. Respect it. The numbness and tingling are here for a reason.



Made an awesome MS friendly lunch today with tomatoes from garden:

Chunky Salad:

  • Cucumber
  • Tomatoes
  • Kidney beans
  • Fresh herbs from garden
  • Fresh corn roasted night before
  • Hard cheese grated on top
  • Oil and vinegar
  • Herbs, garlic, salt as desired
Jazzed up Progresso Cicken and Orzo and Lemon soup:

  • Asparagus
  • Kale
  • Herbs
Dessert

  • Cantaloupe
  • Peaches
  • Nectarines
  • Ah.....summer fruit!
Enjoy!

now, for non lunch blabbing:

I started facebook.com/TheGirlWithMS which of course we need. Did up some designs for cover and such. Not sold on it. Need an image for the girl. A strong image based on my drawings or me as FarmGirl, etc.

Am very psyched with Blogsy and what I can do. With still lots to learn.

Resting. I have to become comfortable with taking rests. A lot of rests. Crazy amounts...

MS is really quite an annoying disease. Controlling ones life like a insulin a diabetic or alcoholic an addict.

Time to find some freedom.

Tell Me, where do you find your freedom?



Friday

Fishing for MS

Off to find a fishing hole...


Fishing in any sense can be a test of patience. But going after that natural wild trout on a dry fly, well, I had something coming.

It's been too long. Since I last fished. Im not as experienced with flies, but I wasn't called "Eddie" for nothing. And oh how I love it.

Fishing, unless one needs the food, is an excuse to sit by a rivers edge. All day long.

This site will do...



Considering the fir trees, pines, aspens and wild roses, The snags were plentiful. After losing some eight flies, I had one major bump. Maybe smaller ones but one for sure. I missed it. I didn't care.

The bump came on a mossy green wooly bugger. The sillier looking the better I heard. Mosquitoes too. And of course the Eatsern Sierras standy-bys: Royal Wulff, Parachute Adams and maybe a beetle or ant. Size 14-16 on a 9 foot, 5 pound set up. A bit long for these tight creek spots but a good overall rod from Orvis' Clearwater collection and a great start for newbies.

Well, OK, what a beautiful day to hole away in the Eastern Sierras enjoying God's bounty.

Last month I went to north lake and fished Bishop Creek just north of there. With one parachute Adams, one cast, we caught a beautiful would brown trout. A "five-finger" I call it. The spread of my relatively large hand' pinky to thumb. Big enough to eat. Small enough to put back if one was already set on food. Which I was. And had no desire or need to kill this beautiful little trout. Let him grow up.

So now I'm fishing on Bishop creek just below Cardinal Village Resort. In a new location as I havent had much luck outside the cabin. I did hear that someone pulled a couple of stocked rainbows last week. Not my thing really. Would prefer a wild trout.

This new spot is sweet. Several pools, protected shoreline, small white water and a shallow tributary feeding in from the south. Scooting on my bum I reach the secluded rocky beach. Just big enough for one person. Hidden from the trail above which is accessed several hundred feet off the road through a barbed wire fence.

On several occasions my flies have found their way round a limb or two. And this was no exception. And each time there was a break in the tippet or a fly disengaged a small curse escaped my lips. Then, a glance around the scenery quickly changed the curse to a prayer. A thankful prayer.

A small gray blue fly catcher landed nearby. Fascinated in his water behavior I let my fly slip on down the creek, never to be seen again. As I cleared my last snag I pulled the rod apart and slipped it in its case. With a Mammoth Golden Trout ale in hand I scanned the area and enjoyed. Life is good.

 
So what does fishing have to do with MS? Everything and nothing. A time to forget the illness. To enjoy life. A patience learned on the river as it is with MS. We are not in control. Let go. Let God.

Thursday

Ann Romney - helping or hurting MS?

Is Ann Romney really helping MS or helping big pharmaceutical companies?

Do people really think that the biotechnology companies are finding a "cure" for MS or even providing medicines they might actually curb this disease or are they supplying costly placebos to pacify us all?

At best, MS treatments such as the daily shot, Copaxone, seem to "offer a 30% chance that they might reduce future attacks".  "Might reduce".  Well, I want more than a "Might"!    And I would prefer if the treatment cost less than rent.  $1200 pre insurance.  For a 30% chance that it "might" keep you from feeling like crap on some random day next month.

Here is one article.  I can think of much better ways to spend my time, money and energy and feel a heck of a lot better!

MS survivors see hope in Romney's fight
Boston Herald
Ann Romney's poise as she addresses the Republican National Convention gives hope to 2.5 million multiple sclerosis sufferers, while showing how far biotechnology companies have come toward curing the once “untreatable” disease, experts told the ...
See all stories on this topic »


MS Survivors see hope in Ann Romney. The Boston Herald seems to think so, 

What Do you think?





Monday

How to Sleep with MS

Why can't we sleep?

There is no real reason other than MS as to why I have sleep issues but it's amazing how I can mess myself up!

Here I am in the beautiful Eastern Sierras listening to Bishop Creek as it riffles by below the cabin. My current view:

On vacation but with a few minor projects and tasks to tend. But not enough to keep me awake all morning. The first night I was exhausted and fell asleep at 9pm when my head hit the pillow, awaking at 4am, which did constitute seven hours of sleep. But I didn't want to be awake at 4am.

So last night I aimed to stay up later thinking I could get seven hours and wake at a reasonable time. Now as the day progressed, after some time in the warm Bishop sun, some fly fishing and some creative cooking, I thought to myself, you are at 8,500' altitude, "Go fill up your water glass". Yes, I thought this often, every time I opened another beer.

I even thought of the magnesium supplement, magneleveux, in my bag, as I opened another beer.

Daydreaming, sketching, visualizing, I had a fun night, as I opened another beer.

Exactly what NOT to do with MS!

Sure, I stayed up until midnight, then woke up at 4:38am. Bing! And I'm awake. The need to pee and the incessant leg spasticity kept me squirming all morning long. The 42 degrees winding through the window bringing with it the sound of the creek was my saving grace. Ugh. I know better. I did take 1/2 a klonopin and a melatonin before going to bed. And another half of klonopin in am when couldn't fall back to sleep.

Three glasses of water later, a banana, magnalevure and some Shen Trition, and this Girl with MS is finally feeling a little better.

What I could have done:

  • Enjoyed the great healthy dinner we had (micro greens, salmon, veggies)
  • Dry brushed my legs
  • Took a not to hot bath
  • Read a book
  • Wrote in blog
Etc....

Yes, these are all better choices then the one I made. So, live and learn. Let go and let God as they say.

This all inspired me to do some researching on sleep and MS. Here is some of what I found:

This is a great summary from WebMD of what can cause folks with MS to have restless sleep: Multiple Sclerosis and Sleep

Life aspects that can effect sleep patterns in those with MS:

  • Stress
  • Anxiety
  • Eating
  • Drinking
  • Nutritional health
  • Age
  • Physical activity
  • Mental activity
  • Spasticity
  • Depression
So, how do we deal with this sleep issue?

Time to change our habits!

Food suggestions:

Small bananas are good: (they still contain sugar so small is better before sleep)

"Combining the amino acid tryptophane with carbohydrates as well as calcium and magnesium can help your brain relax and your body nod off to sleep."

And the magic of oatmeal can make the difference of a more restful sleep pattern:

"Calcium has been proven to help the brain use and process tryptophan, while magensium, a natural sedative, acts as an "assistant" to calcium helping it to be absorbed into your system."




Check out more Foods to eat before bedtime from The Health Central Network

There are other things too. This is just a start!

There is Proof that sleep patterns affect MS!

If you've been having sleep issues and feeling more fatigued, there is proof that the two go hand in hand.


Check out this study: "Treatment of sleep disorders can improve fatigue and other clinical outcomes in MS."

“@MSBuzzNews: Multiple Sclerosis Research: Treatment of sleep problems reduces fatigue: Epub: Côté et al. Impact of sleep diso... http://t.co/f68LV6M8”

Ok kids. There is more to come on this and would like your thoughts but there's a high Sierra creek calling my name....

 

 

Finding peace....

Anger boiled inside. Again. Time to change my story. Anger is not healthy and it's pushing me to the red zone. Time for some peace making.

It's been over ten years with MS. And I still get angry about the disease. I don't want to. I'm gratefull for all I have but I'm frustrated. And frustration leads to anger which leads to bad MS days.

Summer is just not easy for folks with MS. It's a time to find peace but it is such a struggle. And there are reasons for this. Often I forget about these reasons and then the books on my nightstand call attention....

We are blessed to live with such beautiful resources such as the Dalai Lama, The Bible, Chinese Medicine, Ayurveda from India and so much more.

Today the books inspired attention in a random order. At first came Scott Shaw's "About Peace" letting the pages fall freely open to number 45:

"Walk away from competition.

If you cannot walk away from a competitive situation, exist within your own sphere of private peace, while it plays out its limited existence around you."

Well, OK. I thought I had been pretty good with my competitiveness but lets think about it. I'm competitive with myself and that's depressing. I am not the same person as last year or the years prior. Nor will I be the same in the future. As they say, "don't waste today thinking about tomorrow". So, good insight here. I need to let go of competitiveness within. That is a goal to put me in a blue zone.

The next book, "the Ayurvedic year, a seasonal guide to nutrition, yoga and healing" by Christina Brown, is one handy crucial part of my library. For those not familiar with Ayurveda it is a Hindu based medicine long in tradition. Ayurveda means "science of life". The basic view is that all life is comprised of three energy-elements or doshas: air (Vata), fire (Pitta), and water (Kapha). Illness is defined as an imbalance of these elements. Well, I am out of balance for sure! And without knowing much I can say that its my fire that's out of control.

"Pitta is composed of the elements fire and water. Like fire, Pitta is penetrating, piercing, quick, and strong. Fire, like Pitta, radiates heat and when it meets water, steam is created. Pitta types, therefore, get overheated more quickly than the other doshas and prefer cooler climates--these are the people that leave windows open and roll up their sleeves even in winter."

Pages of interesting ways of living follow from eating to mediation to career choices. Yes, I'm definitely Pitta. With some great advice I begin the balancing process. Time to eat some cooling foods, cut down coffee even though I do drink decaf, it just tastes toxic right now. Clear liquids. Soothing, gentle, healing. Reduce alcohol and salty foods. And reduce meats. Cooling salads best for now. Lentils, cucumbers, mung beans and the like...

It's cooling just in the process of better understanding why I'm so angry. And it's not just the disease but my body's natural reaction to it's out of balance shape.

The next book to find its way into my healing path is Grandmas pocket prayer book. Randomly opening the book it yields the following:

Reborn

"I did not know the sky was blue,

I could not call the morning bright,

Until I heard a still small voice

And Lo, the world was filled with light!

I did not hear the morning choirs,

Nor heed the lark upon the wing,

Until I heard Him call, and then

The universe began to sing!

Deaf, dumb, and blind, I walked His earth,

I breathed His air, a thankless clod,

until that blessed summer's night

When my dead soul found life and God!"

-Ralph, Spaulding, Cushman

Refreshing! I could use this little lift and reminder.

Compassion

Compassion to us and to others is part of the Ms healing process. And funny how when I opened the Dalai Lamas book, The Art of Happiness, the pages fell open to compassion.

After a public speaking engagement in Arizona, His Holiness The Dalai Lama gave the following meditation:

"In generating compassion, you start by recognizing that you do not want suffering and that you have a right to have happiness. This can be verified or validated by your own experience. You then recognize that other people, just like yourself, also do not want to suffer and that they have a right to have happiness. So this becomes the basis of your beginning to generate compassion.

So ...let us meditate on compassion today. Begin by visualizing a person who is acutely suffering, someone who is in pain or is in a very unfortunate situation. For the first three minutes of the meditation, reflect on that individuals suffering in a more analytical way - think about their intense suffering and the unfortunate state of that persons existence. After thinking about that persons suffering for a few minutes, next, try to relate that to yourself, thinking, 'that individual has the same capacity for experiencing pain, joy, happiness, and suffering that I do.' Then, try to allow your natural response to arise -- a natural feeling of compassion towards that person. Try to arrive at a conclusion: thinking how strongly you wish for that person to be free from that suffering. And resolve that you will help that person to be relieved from their suffering. Finally, place your mind single-pointedly on that kind of conclusion or resolution, and for the last few minutes of the meditation try to simply generate your mind in a compassion or loving state."

Well said! And put to practice this day. We are a changing! From the fiery pit of pitta this morning to the soothing love of all around us. The body, mind and soul are relaxed and content. We have entered the blue zone....ready to chill and enjoy this incredible day before us!

 

Saturday

The heat issue...again?!

Seriously. If a person with MS says its hot. It's hot! Deal with it. How dare you folks say, "well we have AC, they'll be just fine". Well. F u! Tell an alcoholic it's just a bar or just a drink and oh, by the way, you don't have a choice, the heat will hit and you will have had three drinks. Whether you want them or not.

It's amazing how frivolous folks talk about MS. Never would someone throw an alcoholic in a bar with free drinks. Or a diabetic into an ice cream shop unprepared. MS is a serious disease. Get it!

In fact Click here and read this right now from about.com if you know anyone whom you care about who has MS

"How Severe Can It Get?

For some people, heat intolerance can be debilitating enough that they are unable to function well at even slightly elevated temperatures and must consider moving to a cooler geographic location. Deaths have even been reported among people with MS who ... lost the ability to get out of the heat."

That means do not even try to invite a person with MS to the desert or anywhere when the weather is over 90 and expect them to come without jeopardizing their health and well being. It is just rude, stupid and inconsiderate. How dare you.  Really?  Creating events in 90 plus degrees weather is one thing.  Expecting someone with MS to attend is ignorant and sad. 

So who is the bad guy? Me! Because I have the heat disease but they don't seem to understand why I can't just sit in the AC. Really? Maybe because the AC In the car has never worked right. Seriously. Some $$ POS car that doesn't have a good AC. And don't even bring up the siblings who still have no idea what my disease is about.

I'm the one crying myself to sleep and awake each day yet I'm the bad guy for sticking to my doctors orders and my boundaries. I am heat sensitive! Get it! I'm also extremely sensitive to sound and noises as well as visual imagery and I have been for OVER TEN YEARS. Meaning not a lot of noise, sound or other distractions.  Even these "!" are too much for me.  These are doctors orders yet they seem to mean nothing to family and friends at time.

Here's an interesting article about MS and dysfunctional thermoregulators...body temp stuff...http://jap.physiology.org/content/92/5/1779.full. I recommend everyone with a "loved" one with Ms to take a serious Look at understanding the disease. Stop hurting the ones you love and take ten minutes to understand. The ones closest are often the most ignorant.

Thank you. Feeling the love....Time to hit the road and walk as far as the shade will take me. Unfortunately I didn't wake up early enough for this to be very far...



"It's only 80 degrees out..."

To someone with MS this lack of sensitivity is not much different then telling an alcoholic that "it's just a beer...".

If someone you love or care about has MS, take a few minutes to try to understand it. We all appreciate it.

There's a lot of information out there. I've been gathering a bunch of it at Facebook.com/TheGirlWithMS

Thanks for helping us all thrive with MS!

 

Thursday

Many faces of MS

So many faces of MS...So much to experience!

Face 1: The timid wimp. Living in the past. Sucked into time warps while pretending to move forward.

Face 2: Brave on the front, timid inside. See face 1

Face 3: Brave on front and inside. CRUSHING IT!

It seems, with my Ms, that my life consists of all three faces described above. That's a lot of faces....

Tomatoes healing for MS

A little nesting good for the soul. Friend of mine leaves on vacation after planting amazing garden. Not only are tomotoes a cooling food in Chinese medecine, which means a good food for MSrs, but the cathartic process of harvesting, preparing, tasting and exploring this food is by far a healthy treat!

Just some of the rewards:

In addition to fresh salads everyday we've been roasting the extras. Some I have frozen in bags for later use. I've also slow cooked/dried some. Want to do more of everything. Yum!
 
 
Home made roasted tomato sauce for the gardener when she returns:
 
And then there was big Bertha at 1.5 pounds....

Big Bertha ended up to be quite the tart

Time to harvest more tomatoes. What to create next?!

Sunday

Peace of the Day & The 4 Stages of MS

Morning light has not begun to filter into my room yet. Crickets chirp in a rhythmic yet random symphony of muted tones. It seems about 3AM, a frequent time for me to awake. One of my most loved and most disliked times. Love for the immediate pleasure. Dislike for knowing that sleep will once again befall me and this moment will be gone, to be replaced by hot temperatures and hours of air conditioning.

But for the moment it is love. With the windows open, a few stars visible, I stare out into the darkness and listen. Crickets blend with birds as the day starts to awake. A scuffle or two by a small mammal puts a pause on other sounds. Then the chorus begins again. Stars fade into sunlight.

I awake, close the windows and feel the cool air of the conditioner start to protect me from the impending 100 degree day.

Today is Sunday. I greatly enjoy our sermons but today I chose to spend the wee hours enjoying Gods gifts then slipping into a much needed, restful sleep.

Oh, how appropriate. Marley's "No woman no cry" just came on. Wow. Wonderful flood of memories and feelings from years of emotions. And appropriate that it would come on now. When I woke at 3AM my body was full of angst. Angst caused by the feeling of no control. I emphasize feeling because I do have control, it just needs to be located and encouraged.

When first diagnosed with MS my goal was to survive. Simply survive. As that became easier I learned how to redefine myself to fit within my ever-changing boundaries. But at times I have let the disease control my life. Not a good thing! The best of course is when we can thrive with MS.

FOUR stages of living with MS:

  • Surviving MS
  • Redefining thru MS
  • Controlled by MS
  • Thriving with MS
Surviving MS

Survival mode comes in two ways. First and foremost it kicks in when a relapse hits or when one is first having symptoms of MS. The second is a self-imposed survival mode of rest and gentleness. Find a good doctor, have a good support group, have a great attitude, learn as much as possible about the disease, be kind to yourself. Be very, very kind. Listen to your body and rest. Slow down. Find a balance of medicine that works for you and your life style. Slowly gain your strength back. Do not rush. Steroids, NSAIDs and other short term medications aren't that great for you. Find gentler, alternative routes. Take care of the big picture. Reduce stress. Let go of the small things. Start the redefinition process.

Redefining thru MS

There is no need to count how many times I've had to redefine my life with MS. This change is now a constant in my life. When first hit the devastation forced me into early retirement from corporate operations and marketing. That was a tough one. My career was my life. Time to redefine.

Holistic nutrition became a focus and after a two year study became certified. This was a huge benefit for my MS and overall health. Using these studies and my BS in Agribusiness, a nonprofit was created to help educate the public about healthy foods. The nonprofit as since closed but the resources are still available at http://FarmosaFarms.com. During these years my practices in whole body health, yoga, and alternative lifestyles grew.

Photography and graphic design were next. After a couple of art shows and a scholarship to the Art Center, this was an exciting new chapter in my life. While both provided many opportunities and sources of income as my MS worsens so does my ability to do either one of these. No longer can I photograph an event with a couple of cameras and feel comfortable. the weather, my strength, the fatigue all play a roll into what I can do and it changes daily.

Horses have always been a part of my life but even now I have to once again redefine my limits. Wouldn't it be nice to have a horse to train? But can I do it? Could I ride a few times a week and give lessons? Not here. I'm tired of here. I can't spend another ten years watching my life slip away. How do I redefine my life without being controlled by my disease?

Controlled by MS

With so many limits and restrictions caused by MS how does one move forward in life without feeling controlled by the disease? Attitude is a good start. Mind over matter. Control the disease in my mind and I can control it in life. But this concentrated energy can be difficult. Sometimes we just want to play. We don't want to check the temperature every minute. We don't even want to say we have a disease. We don't want to have to plan every movement or redefine our lives for the umpteenth time. Well, buck up because you do and now you're sounding like a spoiled child. Think of diabetics and their daily diet restrictions. Alcoholics and their sensitivities. It's all the same. Don't even let the disease get a holt of you to begin with.

Thriving with MS

This is where we want to be! Thriving with MS. By using what we've learned about this disease we can become a better person building a life that thrives. Take a good look at where you are and what your boundaries and limits are and then set a few milestone markers of where you want to thrive. Write these down. Don't be harsh on yourself or put down too much, just some general guidelines to get you started.

Be honest with what works and what doesn't. Riding is great for me but not when it's 100 degrees outside. Writing is very good for me as well and can be done near the A/C. Go through your own list and make a loose plan to find your thriving point.

Be the Star

As we saw this morning when the stars fade into daylight, think of yourself as a star. Temporarily fading into survival mode, coming out at night in control, flowing with the rhythm of the earths cycles....we are all stars looking for our path to thrive.

What do you do to thrive with MS?

Wednesday

Shade trekking, cold showers and surviving summer

One of those weeks! Not bad relative to other areas but with MS it doesn't really matter past 80 degrees.

Time to get outside early and go "shade-trekking" which is just like it sounds. Cold water in tow, cooling vest if necessary, hat and sun protection on, we hit the shade. Fortunately we live in an areas full of tall trees. But one wrong turn can put you in the sun for over a block. And it's too warm for that! Our goal is a gentle walk that doesn't stress the body other than a nice physical activity. If its so warm that a cooling vest is needed then maybe another time during the day would be better for your walk?

Sometimes we have no choice and need to just get outside. Just remember to be kind to your body as its been through a lot. Kindness goes a long way with MS. To oneself and to others.

Trekking we went, diverting our course according to the morning summer sun. It's easier for me to walk a bit quicker if I start to get too warm. The strolling, if prolonged, can exacerbate my internal heat. This is true if I'm starting to enter the red zone. If I'm just lingering in the green to orange, and I see blue on the horizon, then I am ok. It's all about the zones for my MS management.

Today I could have gone into the red but I showed restraint. Visualized the blue on the walk home until I stepped into the cool shower and felt my core body temp drop. Then I stretched and prayed and slipped into a nice green zone for today's projects.

I've mentioned zones before but here are my visuals:


That's how this girl with MS is surviving this day with MS!

Now for the thriving part....watch this spot!