A Day of Rest, Rejuvenation and Random Surprise!

Fortunate to be at my friends little hideaway. Resting and recouperaring from the last couple of weeks. Energy is just low. Drained. Wiped out. But here I am in a little piece of heaven while my body rejuvinates.
This is Leroy. He is my dog of the day. He lives here and let's me come over and rest with him. He seems to know just how much ball I can play before I get too tired.
Last evening was spent by a beautiful fire. It's an original Batchelder fireplace. This is quite the bungalow and could easily live here. Lots of great reading around. No chance of getting bored here!
Yesterday we celebrated the life of a community trails advocate, fellow board member and friend, Elizabeth Blackwelder. It was a beautiful ceremony and saw many friends and acquaintances. But needless to say I was wiped out. Last night and this morning. Legs on fire. Time to rest.
Today was a full day of rest. Other than a doodle here or there, a fledged attempt at a wall etching, this has been a pretty chill day.
Batchelder fireplace 1924
And then the random surpise.
Received a Facebook post about a new website/business called Basically it connects those needing in or out of home health care and those with health care providers. This is huge in my hood. So I contacted my old friend and boss, Mike Jones, of Science, and congratulated him on the launch. Next thing you know, I have a conference call Monday afternoon with Home Hero to see where I can help out. I have so much passion toward what they are doing it has me absolutely psyched! I will keep you posted.
I will give this project more attention but wanted to get it on the blog! Many of us are going to need this one day or another.
Rain is slowly making it down the State of California. Hoping it hits here. We need it. Desperately, we need some rain.
Off to do a rain dance...of sorts!

And to enjoy yet another fire...

Feeling a little MS, but bring it on!

Dogs, good friends, a fire and some stunning wine make for a lovely afternoon and evening during the rainstorm.
Cowboy and Tucker
Some local flavor as well as something stunning from the cellar.
After an amazing salmon dinner with friends, we brought the horses in from the rain as the fields looked like they could flood a bit when high tide came in.
I was tired by the end of the day and settled Into an early evening. While I slept pretty well, I did awake around three am and took awhile to fall back to sleep. Wasn't anxious or anything just mind wandering.
For the first time since I've been in Oregon I could feel the MS in my legs. The fatigue and weakness creeping in. Oh crud! I haven't even fished or ridden yet. But that's OK. After a little stretching they seemed better. I got dressed and ready for our morning walk.
Today we walked with the ladies on Beaver Creek. The weather looks a bit threatening so I left my camera at home. I considered my rain pants. Hmmmm. Not sure why I only considered them. Would've come in handy.
The creek was swollen and the weather seemed ok. Then the skies opened up. And boy did I wish I had my rain pants.
A little flooding but there is blue sky! Looking forward to a ride tomorrow on the horses.
Let's do this!

Do what you can when you can. Life is short!

Wiped out.  Nothing more to it. 

Cement boots on and energy level that of a sloth on dope. 

But let me tell was Worth it.  

A splurge of a day.  Picked up by a friend at 5:15am we head to Malibu or the 'Bu as some folks call it.  Unfortunately I slept like crap on Thursday, up every hour from 1-4am. Not sure why, and nothing I could do about it but get on with life.  

Earlier this week I invested in a stripping basket, a new line for the wheel I won last spring, and some flies for the surf. Psyched to say the least.  Only my second time surf fishing on the fly and the club was going as a group. 

It wasn't until 9pm Thursday evening when I found there was a ride for me to the beach.  Driving that distance isn't a choice with my Multiple Sclerosis.  Excitedly my fishing gear was formed into a nice pile and placed by the door.  Water bottles, porta urinal, diaper and other Tools for MS were packed as well.  Fishing with four men, and my MS, this shall be interesting.  

After an easy 30 minutes we were in front of the Pacific Ocean sipping coffee, stringing up the rods, deciding which fly to use.  I went for the shrimpy looking thing but thought that the red checkerboard would be the slayer.  The water was real clear.  Beautifully still with small waves forming.  

With waders and boots on, water bottle in tow, fly rod and stripping basket we head to the water.  Within an hour two of my friends are hooked up with Corbina.  One was tail hooked and fought for awhile before getting off.  The other one was a beautiful fish and his first Corbina. I was psyched to take pictures and be there to watch him tactfully being in the fish.  

In fact I may have been more into the photography than the fishing. Or at least enjoyed the photography as a break. In casting.  

My casting isn't the best and being my second time in the surf, the 8wt, sinking line, was a lot for me to handle.  I'm looking forward to taking a class in this type of casting.  But I handled it. And I did not fall into the ocean and get drifted away.  

Being not the best swimmer and with balance like a weeble, the fear of falling in was strong.  I didn't go in above my chins. One time a bigger wave got me and I al,let took a tumble. Maybe a pfd would be good to wear for safety.  One guy had one on and with my instability with MS, could be a safe option for me.  

Have you seen the Martian? Or read the book?  Or seen anyone in a spacesuit walki?  That's me in my waders.  And Waking around in the beautiful pacific coast sand in waders and boots for over two hours, well, that sand gets heavy. 

I'm laughing because I'm obviously not using my stripping basket in this photo But I got used to it by the end of the day. 

After two and half hours I was done.  My legs will be burning once this adrenaline wears off.  Tomorrow will be shot.  This afternoon will be shot. But it was worth it!  

With MS, fibro and other chronic illness our lives are limited. We must do what we want at time. Enjoy what God has given us.  This is a beautiful world.  Enjoy it.  Love it.  Respect it.  


Massage Benefits MS

Many folks have asked about the benefits of massage for folks with MS.
Bottom line, I prefer spending my money and health on massage than on many of the Western "medicines" created for MS. Which don't seem to be true medicine. They are drugs that cover up the symptoms. So how do we reduce the symptoms and treat MS proactively?
Among other ways to live healthy including nutrition, exercise, and spiritual well being, massage is a great physical way to remove toxins from our bodies. Whatever caused our MS or whatever exacerbates it, the one thing we can do is keep our body as clean as possible.
Now this is not always easy. Trust me! Coffee, tobacco, alcohol, artificial sweeteners, fake foods, artificial or fake anything can send MS into a tizzy.
The goal always is to reduce these toxins and increase MS beneficial foods, such as cooling mung beans and detoxing apples.
One thing we can do to remove toxins is to have a massage. And what a treat it is!
Massage seems to help in several areas:
  • Spasticity
  • Pain
  • Fatigue
  • Poor circulation
  • Mental wellness...ahhhh....
The National MS Society has good information about massage and bodywork therapies click here. Here is the NMSS summary of how massage effects (or not) the course of MS.

"Massage and the underlying disease of MS

While massage can be helpful in relieving stress and inducing relaxation, it has no effect on the course of MS. A 1998 study investigated the effect of massage in people with MS on:
  • relief of anxiety and depression
  • improvement in mood, self-esteem and body image
  • increased ambulation and improved physical and social functioning.
The study used self-reports by the participants and found that, at the end of a five-week period, physical and social activity had improved in the people receiving massage. Those in the massage group also reported a decrease in depression. There was, however, no improvement in grip strength and only marginal improvement in ambulation."
So, keep up the massage and add some strength training or yoga to keep those muscles strong!
Lance Armstrong's talks about the benefits of massage on pain in MS sufferers. By reducing pain, massage can help folks become more mobile. Less pain = more movement. Folks withnMS don't want to be in bed. Sometimes we don't have much choice.Massage & Bodyworks Magazine has done their research with regards to MS and massage presenting us with one of the most comprehensive yet simple to digest articles summarizing MS, the disease, along with the benefits of massage. Click here for more. "For the MS patient, a well-being approach for addressing body, mind, and spirit is essential to combating the effects of the disease. Helpful self-care can include a daily routine of tai chi or yoga, meditation, and attention to diet." They get it. They get the disease and seem to understand what we need to feel better. Many therapists, especially in the Northwest where prevalence is higher, jphave numerous MS clients. Crowell is one of them:"With her extensive MS experience, Crowell says she has learned the importance of balance between releasing spasticity and maintaining enough tone for the client to function. "If you relax someone with MS too much, they can’t walk when they get off the table. They use the spasticity to keep them erect." By implementing a reflex response technique, she reduces spasms without decreasing tone. The client is better able to maintain standing balance, and for those who are not ambulatory, core stability is increased so they can sit better. "One of the things people tend to lose is control. You are working with refining the amount of contraction they use with a given movement." Wow! This is some great stuff. A must read for all with multiple sclerosis. Click here for full articleHere is a summary of MS symptoms. All can be helped with the right massage! The American Academy of Neurology talks about the most common massage techniques used for reducing pain in MS patients:Craniosacral massage: Light pressure is applied to the head, neck, and spine to ease tension and compression. This type of massage is not appropriate for people with conditions that could be affected by intracranial pressure changes, such as acute aneurysm, cerebral hemorrhage, or hydrocephaly.Lymphatic massage: Light, rhythmic strokes are used to improve the flow of lymph (a colorless fluid that helps fight infection and disease) and get rid of waste throughout the body. Lymphatic massage is often used to reduce post-surgical swelling and to help heal sports-related injuries.Myofascial release: Pressure and body positioning are used to loosen and stretch the muscles, fascia (connective tissue), and related structures. Both physical therapists and massage therapists who are appropriately trained use this technique.Reflexology: Specialized thumb and finger techniques are applied to reflex points in the hands and/or feet.Shiatsu: Gentle finger and hand pressure are applied to specific points on the body to relieve pain.Swedish massage: A variety of strokes and light-pressure techniques are used to enhance blood flow, remove waste products from tissues, stretch ligaments and tendons, and ease physical and emotional tension.Trigger point massage: Pressure is applied to trigger points (tender areas where the muscles have been damaged or where tension accumulates) to alleviate muscle spasms and pain.One of my favorites? Lymphatic can feel the toxins being squeegeed out of you! But I love them all. In fact, I'm off to get one now! What's your experience? Pro massage or toss it?


Seeking Quiet to Restore Battery

When the body and mind are fatigued to the point of exhaustion, we seek solutions for our Multiple Sclerosis. Some are quick fixes, such as caffeine, sugar, alcohol, prescriptions such as provigil. But what we often need is solid down time. Time for our battery to restore and rejuvinate.
It amazes me, the power of shutting down one's sensors in order to feel stronger with MS. Sensory overload is tiring. It saps the energy from our batteries at a rapid rate. Sensory triggers such as light, sound, movement from people, crowds, events, television, can all effect our MS symptoms by putting our nerves on high alert. And our nerves are already on high alert.
Twenty four hours can make all the difference, even a twenty minute "time out" can help. But these breaks are not easy to find. With family, work, community, household demands, how do we fit in healing time for us?
I had a sad experience this weekend. And one I could have fixed, maybe. My dad and I had a couple of nights at home and mom was gone. We wanted to watch Dallas Buyers Club. Problem is he won't use a hearing aid and watches TV at volume 75. I am sensitive to noise. In addition our television room is not the best set up so you either have to sit pretty close to the tv to see it or far away which is hard on the MS vision. And by the end of the evening my senses are already tired so television is not a good option for me. It was tough. Decisions like that seem small but they're not. MS symptoms effect our lives everyday. I could have worn earplugs and sat in the room with him but I was already having an issue with my MS and didn't want to push it. Bottom lime, no Dallas a Buyers Club and no movie time with dad. We made up for it by spending time in the garden together. Where it was peaceful and quiet.
As the weekend continued So did my aversion to all things noisy. While dad was catching up on his tennis, something I usually enjoy, I found myself seeking the quiet of the garden where the air floated between blue skies and the colors of spring.
How do we find time to heal? We find the opportunity and make choices. Sometimes they are not easy choices but they are important choices. I knew I had an opportunity for quiet time last night. My last chance before my next MSontheRoad adventure which starts tomorrow. And I took it!
After brewing a pot of herbal pomegranate tea with some local lemon and honey, I stretched out on the sofa and fell into a book, Divergent, by Veronica Roth. Pure entertainment. Mindless yet curious, the perfect distraction.
The house, quiet. Through the windows the birds chirp and chatter about the garden. Encased by glass and redwood, I peer over the pages scanning the tops of a deodar and a palm tree through the filtered pink light-shades of the angels trumpet tree.
Angel's Trumpet
For hours I rest. Reading, sipping tea. Closing my eyes as needed. All day until my eyes chose to stay closed which was only about 9pm. After some water and an evening melatonin I slipped into a beautiful, restorative sleep. Waking at about 3-4am to relieve my bladder, sleep was easily found again. A much needed night of rest was had.
When I woke a couple of choices presented. Attend church, (which I often do but missed the last few weeks) or stay in the quiet zone (take advantage of this rare opportunity). I chose quiet zone. I can watch the sermon online which are helpful. But the quiet zone is a rarity. It's important that my battery be fully charged before tommorow. And honestly, it feels pretty darn good!
The day ahead is planned between a mix of quiet and productive time. A few more tasks to attend to before leaving town. Family will be returning so will the responsibilities: dinner, dishes, conversation. The goal will be to use the least amount of battery power while finishing things up. And to take as many "time outs" as possible
Time to do this!
Time to Rest. Relax. Restore.


Plan B necessary for those with chronic illness.

Living with multiple sclerosis is as random as a snowflake.  No two the same. No two days the same. 

Every morning when I wake up, I thank God. Thank him for my wonderful life and all the blessings bestowed upon me. Even despite having MS, it's best to focus on the positive. 

In addition to my gratitude, each morning is met with a body and mind analysis:  how's the pain?  The cognitive fog?  The fatigue?   What's the weather like?  On a scale of 1-10, with ten being the best, how is my ms?  

Once that's determined, then I can make plans.  But wait!  This isn't fair.  How can one live if they have to wait every morning to see how they feel?  Where's the spontaneity? How does one avoid being called flake of the year if plans have to change?  

Plan B!

Yes, as simple as always having a plan B can make all the difference in the world.  

Plan B can be simple or complex. Most importantly it's an option that is doable with ones multiple sclerosis, or ones limitations. 

Just a couple of weeks ago I had a big event. The Los Angeles County Trailduster ride with Supervisor Mike Antonovich. Almost six months in the planning we were expecting over 120 horses and guests to our little community.  So, I better get ready!  

My concerns for the ride:  Heat, balance, urinary problems, pain. 

I hadn't ridden in about a year so I borrowed a friends horse and stretched the old legs out. And boy did it feel good!

The day of the ride came. The weather was predicted for light showers and highs of 82f.  I can do that! Plan B for warmer weather included chillin vests, cooling scarves and bags of ice. But I don't need any of it.  The weather cooperated. 

  As far as the bladder goes, I rely on a pee pad and told myself to take advantage of the halfway pit stop on the ride.  Last time I didn't and when I got back to the barn, peed all down my pants.  Didn't want to do that again!  

Balance issues. Well, I don't have control over this issue but when I got on the horse I felt fine.  My plan B for this issue was to either not ride or take a slightly shorter ride. 

With several Plan Bs to help my day, I approached the ride with confidence knowing that whatever I ended up doing, it would be a great day. 

Me on my trusty steed, Roper. 
Caroline Craven and County Supervisor Mike Antonovich

Local charros waiting for the ride to begin. 

Parks and rec, city officials, trail boss from La Canada Flintridge 

The fact is, our lives are ravaged by the randomness and disabling qualities of multiple sclerosis. But we can learn to thrive. We can learn to wake up, embrace the positive, create alternative plans, and live life to the fullest.  

There have been plenty of days where my plan B ends up with me in bed. But not every time. I had several plan Bs scheduled and arranged nutrient need any of them this time.  So #takethatMS! 

Multiple Sclerosis in the News