Wednesday

Making money because of My MS? It's about time!

Well, it's about time!

This gosh darn disease has cost me enough money, time and energy. It's about time we make some money because of our illness. And here is a great way that I make a few bucks, especially on those down days when I'm stuck in bed and the MS MonSter is on a rampage.

I just learned about an independent medical research company that wants our opinions and thoughts! Check out YourCareMoments.com. It is free, safe, private and confidential. I signed up and once a week or so I receive a survey about my medications and my multiple sclerosis.

The surveys take about ten minutes, depending. And in exchange for my honesty I received $7 in my paypal account. Now each survey is a little different. And the payments range from $3-$10. It may not seem like much but CHA-CHING. It ads up!

Who doesn't want a little pocket change for bus fare, a nice cappuccino or a glass of wine or something else? I know I do! And so worth it on my down days...makes it feel a little better to be stuck in bed with MS when I can make a few bucks.

Let me know what you think!

I'm off to take another survey. Then this afternoon, I'm joining some friends for fun on the town, paid for by YourCareMoments.com. Yay me!

Click here to sign up: http://yourcaremoments.com

 

 

 

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?

Massage!

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 LIVESTRONG.com 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 massage...you 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?

 

Monday

MS is like an iPhone Battery...and I need a recharge!

Keeping ones battery charged with MS can be as tricky as keeping an iPhone 5 going all day. Remembering to turn off location services and programs running in the background is vital to keep an iPhone chugging along. But how do we do this with MS?How do we turn off those programs running in the background. That constant chatter of energy being wasted. Do we meditate? Medicate? Or both. And when it comes to our location services, how do we unplug ourselves from those wanting our energy? Do we withdraw? Or de we become strong and set boundaries?

So much in life has changed with my MS. Every decision, every thought is focused on how it will effect my mind, body and soul. While this is a good thing in the long run sometimes one really just wants to kick down a loaded cappuccino, go for a hike, enjoy a pipe on a cold and rainy day while reading Harrison, drink a glass of wine or two with good friends, tie some flies, hop in the car and drive...just drive. A certain since of freedom is stripped when a disabling disease like MS hits. Freedom in so many ways. Once a road warrior. I am now a shuttling sissy. It started with a panic attack on the LA freeway amongst heavy traffic. No escape. Panic stricken, batteries faded fast. Eyesight diminished rapidly. Then the convulsions and dry heaving that would randomly hit never made it safe. Let cramps, not good for driving either. While these issues don't happen all the time, they've occurred enough for me not to trust my body, understanding now that my batteries could crash at anytime. Knowing this makes me feel vulnerable and vulnerability creates fear. Too much fear can strip us of our lives. To a point we can quick charge our batteries: caffeine, tobacco, provigil, sativa, sugar, etc. But how long can we quick charge before the battery won't take a charge? And when we are left stranded there is no back up battery. No way to plug into the wall and recharge. We have only one battery. We must take care of it. So how do we turn off those extra programs running? Visually I imagine the blinders on horses. Those eye guards that keep the horse looking ahead and not distracted. "Put your blinders on Caroline" and get to work. Focus on one project. Or one meditation. One walk in the rose garden. The point is to have just this one program running. And turn off all others. Blinders. This works for me, most of the time. But there are those times when it doesn't work. When I need a distraction. And another distraction. And again and again until I have six programs running and my battery bar is slipping fast. "Put those blinders on." But sometimes it just doesn't work. Then I stop everything and go lie down in a nice cool place that's not to bright. Closing my eyes and just being quiet. Recharging. Ahhhh. It takes strength to keep our batteries charged. To know what we need to do to take care of ourselves. To unplug from others when we are on low battery and turn off our location services. For me this meant learning a lot about boundary setting. Rules. My rules for my health. This can be hard on friends and family. Setting boundaries can take a lot of explanation, patience and communications. But it's essential for defining our needs to keeping us alive and void of fear. To live life on a full battery. That's my goal. To manage my software and take care of this battery before it won't hold a charge.

Let's do this. Let's keep our batteries charged. Let's rid ourselves of fears and vulnerability. It's time. It's time to take charge and recharge.

 

Wednesday

Empowerment To Heal - Reposting today for encouragement

I wrote this a year ago today. Woke up feeling a bit blue and legs on fire. This was a good read to get me feeling good again. This post is from Oahu, Hawaii near Kailua. Love this place!

What a morning. Woke up. That was good. Had no desire to do anything. I was angry, pissy and antsy. And it was beautiful outside. My last day at the beach and my legs felt like concrete. After some water and self encouragement my clothes adorned, I grabbed my bag to go explore the town. Or at least to stretch the legs.

Sun was shining bright. A bit too bright. hat on. Body covered in light clothes. I wasn't sure if walking to town was meant to be. The ocean washed among my toes as the sand passed by. But the sun had a chance to stop me.

I wouldn't let it! Meditation, prayer, mental concentration took over. Focus on warmth was waning and walking became pleasant. A couple miles down the beach I veered into town and hit the road. Trees and shade from the clouds a pleasant reward.

Wandering can be such a freedom. How often are we stuck in neutral with MS. But not today. I empowered myself to mentally move beyond my illness.

I kept walking. Strolling more like it. Taking every sight in. Every sound. Soon, I was at town center. An hour or two later and I've explored local scene and ready to hit the road home. Knowing that I could catch a bus was a good back up plan. But I strolled back the long way and strolled down the beach one last time before my flight. What a feeling!

A morning of concrete boots ended with a beautiful six mile adventure. The feeling of empowerment was and is amazing.

We are capable of so much more than we realize.

There is a fine line between empowering to do good for your body and over doing it. Today I found the balance and it felt amazing! The meditation while I walked created the attitude adjustment I needed. I pushed myself but just to the level of comfort.

Upon returning home I took necessary precautions and drank a double serving of "Calm", a magnesium supplement, took a rest and drank plenty of water. Boy did it work!

All of my negative energy that I awoke with was gone. A clean, clear presence swept through my body. Peace again for this GirlwithMS, peace again.

 

 

 

Monday

Accepting pain- our new normal

 * SEPT 11 * Date Set for 8th Annual Women in Pain Conference!  


What is pain and how do we continually accept our new normal?

What an amazing day with over 100 sisters in pain put on by the talented and beautiful Cynthia and John from Http://forgrace.org.
Held at the LEED certified building of the California Endowment Center in downtown Los Angeles, the conference was full of information and resources, tears and laughter.
If you've never been to a LEED certified building you are in for a treat!
The topic this year was "Accepting pain, our new normal". There were folks with every type of chronic pain producing ailment. Mine is MS but I also suffer from fibromyalgia and arthritis. The daily pain becomes bearable only because there is no other option. Or at least the other option, being dead, is not preferred.
Here I am on a panel of women in chronic pain. My main goal was to not fall off the chair with my wobbly MS. To watch the conference and panel click here.
Pain and suffering in women of all ages led way to Tears and laughter filling the room. Hearts were ripped open to their barest and shared with the world. In order the lighten up the. Mod and ourselves during the day, we played games!
The conference leaders created games for us to play and discussed the importance of playing in life. Here were just a few distractions to keep us engaged. We played with chopsticks and made googly eyes for starters...
But the real message was about pain and how we all take a Heroes Journey to learn to accept our new normals. The heroes journey, as presented by Jennifer Hughes, shared with us all the importance of the heroes cycle, of the need to overcome a weakness I order to survive as a hero.
Based on and Taken from Joseph Campbell's 'the hero with a thousand faces" sourced by Wikipedia.org.
"A hero ventures forth from the world of common day into a region of supernatural wonder: fabulous forces are there encountered and a decisive victory is won: the hero comes back from this mysterious adventure with the power to bestow boons on his fellow man.[3]"
So what does this look like? There are several images of the heroes journey. Here is one from Wikipedia that sums it up nicely.
It is this heroes journey that we all must take in order to accept our new normals every day. As Jennifer Hughes said in her talk, Do you Dare? Do you dare to take this journey and accept your new normal?
I have dared and I have succeeded! Here we go....time for some acceptance. Let's do this!

Sunday

MS Nurses in US!

For awhile now, I've been reading about the MS nurses available in the UK and other countries, someone we can call for support and questions about multiple sclerosis. Well, we now have them here! Thanks to Genzyme corporation, maker of Aubagio, we now have access to MS nurses via their new service, "MS One to One". Click to sign up.

I learned about this program on my recent adventures in Chicago where I worked as a lifestyle expert at a seminar for Aubagio. (More on this later.)

Today I received this email about the program:

"Hi GirlwithMS,


We’re always on the lookout for helpful services that could benefit members of MyMSTeam. We recently learned about MS One to One®–a free program from Genzyme that lets you speak directly to an MS nurse during regular MS One to One call center hours–Mon—Fri 8:30 am—8:00 pm ET. In addition, there are also on-call MS nurses 24 hours a day, every day.

You can register for MS One to One even if you’re not on a Genzyme treatment.
We receive financial compensation from Genzyme to let you know about this program. It’s one way we keep MyMSTeam free while letting our members know about useful services. "
Man, I sure could have used this program 14 years ago when I was first diagnosed. Especially with all those newly diagnosed questions. But I could use it today for much needed continual support. So, I signed up.
You can even have a nurse call you and check in on you. How cool is that?!
So many features to engage in...check it out

 

 

Multiple Sclerosis in the News

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