Girl with MS - Tips & Tools for Thriving with Multiple Sclerosis

Free to Pee!

CONTEsT!

In honor of snaughling, diapers and MS, I am running a contest to help promote Wearever incontinence underwear and build awareness around their MS projects such as fundraising for the MS Foundation.

Introducing the #FreetoPee contest!

Wearever provides financial donations to MS Foundation, who in return provides us all with lots of great information.

So, to enter the contest:

1. Check out the array of products at Wearever and see how they could make your life easier with MS

2. Share and Like Wearever:

"Like us" on Facebook

· Facebook: https://www.facebook.com/weareverus

"Follow us" on Twitter and Pinterest

· Twitter: https://twitter.com/WeareverOnline

· Pinterest: https://www.pinterest.com/weareverus/

It's that easy!

Remeber - Your input could help others in the same situation.

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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

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GUEST BLOG: Jade learns about managing MS and more!

While I prepare for my trip to Pittsburgh for the next TakeActionMS.com on JUNE 13, I remember this gem of an #MSSupporter, Ms Jade. Check out her experience from earlier this year in Houston:

From our guest, Jade:

When I heard about Genzyme’s “Lights, Camera, Take Action On MS” campaign, I was immediately interested. As the friend of a caregiver for someone with multiple sclerosis, I found myself growing nervous whenever my friend would mention the disease. I assumed that because I didn’t know much about the disease that I had little to offer. Frankly, I was afraid of asking questions about it. My attempts to stick to safer topics had only left a divider between my friend and I. Without hesitation, I signed up for the Houston event, hoping to get an idea of what to say or what to do when supporting a caregiver for someone with MS.

The Girl with MS and author, Jade, meeting up in Houston!

Before the event, my nervous nature kicked in and I was almost too afraid to go into the conference. I was terrified that everyone would ostracize me. I don’t have MS and I couldn’t help but assume that it meant I didn’t belong. However, the minute the presentations started, something resonated in me. I don’t have MS, and I can’t begin to imagine what that would be like. I do suffer from chronic migraines, another neurological disease. I’ve never stopped to compare the two because I always assumed that migraines were nothing compared to other neurological diseases.

When I get a migraine, everything is a struggle. I get so sick that the blood vessels burst in my face. My speech is slurred and my eyes roll back in my head. I’m unable to make eye contact with those speaking to me and often am unresponsive when spoken to. Eventually, I lose coordination, many times fainting, which has resulted in hitting my head more times than I can count.

It wasn’t until the interactive kiosks that I realized how much I understood the disease. It was the seminar on Managing Stress that really hit home. Lifestyle expert Caroline Craven spoke of different ways to maintain a calmer, healthier lifestyle. Like those with MS, I’ve had to keep a plan B in case a migraine popped up. Stress, changes in weather, a simple fight with someone could invoke a migraine. Learning to accept help was another life lesson that I’d been forced to learn. While I’m proud of myself, it’s nice to know that the instance I start pressing on the bone above my eye my husband will grab medicine and water for me. More than anything, when Caroline talked about humans being the same as our smartphones, and needing to power down when our batteries are running low really struck a chord. I know firsthand how planning too much or trying to do more than I’m capable not only wears me down, but causes relentless migraines.

I had spent so much time worrying over what the right thing to do would be that I had never thought of the childhood lesson, “treat others how you’d like to be treated.” I had shied away from offering to help because I was afraid of infringing on self-sufficiency when in reality, all I was offering was a sample of human compassion. I had let myself feed into a stigma of the disease, too afraid to show my altruistic nature.

I found comfort in the MS panel. When MS Ambassador Leslie Cunningham talked about co-workers not understanding side effects of MS (such as being tired despite getting a full nights sleep,) I understood. After all, I’ve taken neurologist notes to previous jobs only to have them regard my illness as “little headaches.”

She mentioned her friends helping her with the injections of medication. Because I’m often unable to keep anything down, the doctor prescribed forced air injections. I know the terror Leslie must have felt, although I was fortunate enough to take my injections sporadically. The medication was forced so rapidly through a glass pinhole that it left welts and bruises on the injection sight. Even mentioning the shots caused me to hyperventilate. Like Leslie, I was unable to give myself the injections and often relied on my husband to administer the medication.

Actress Madeleine Stowe talked about how different the disease and it’s treatment was during her father’s struggle with the illness. Without modern technology, her family suffered in silence. Very little was known on the disease. Even with today’s technology, so little is known about the causes of my migraines. I’ve tried eliminating certain foods from my diet, following a strict sleep schedule, looking for ways to eliminate stress (such as meditation or exercise) and even taking daily medications to prevent them. In reality, my migraines were as sporadic regardless of any type of regimen.

I had gone into the Norris Conference Center expecting a cut and dry answer; say this but not that. Do’s and don’t’s. Instead, I realized that I had the answers all along. There is no simple answer. Each person with MS, just like any other illness, is unique. Even if the offers aren’t taken up, the fact that I offered would mean more than remaining silent. As for learning what to say, I realized it isn’t about what I ask. It’s more about accepting the answer. There doesn’t need to be a reason that someone with MS feels tired. They don’t have to look sick. I traveled halfway around the country in search of a better understanding on multiple sclerosis and instead received a life lesson on human nature. Patients with MS and their caregivers don’t need someone to be there with all the right answers. They just need someone to be there.

Caroline with Madeleine Stowe

Learn more at http://TakeActionMS.com

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Kids guide to MS and others! Free resources online....

Information about MS has grown significantly in the ten years since being diagnosed with MS. Much research and alternative thinking has created many new resources online to draw material from. Some resources are very clinical while others are personal musings, both of which are invaluable for a random disease like MS.

Between search engines, Facebook and twitter feeds dedicated to MS, the information is excitingly overwhelming. Never have I seen so much variety in researching this disease.

One of my favorite Ms organizations is located across the pond:

Multiple Sclerosis Trust

Follow on twitter: @MSTrust

Http://MSTrust.org.uk

Check out these great resources for families and friends of this with MS!

Way to go MSTrust!

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Who am I Today?

Found this from 4/20/15:

MS is random yet predictable making it difficult to make plans, especially in the summer and warmer months. Each morning as I stretch and pray and visualize the day, my body is analyzing itself. What will I be able to do today?
I'm I feeling spunky and creative? Ready to flow with the river of life?

Or mellow girl needing quiet and time to rejuvenate?
Morning analysis is necessary for surviving and thriving with MS. We can make all the plans in the world but if we don't listen to our bodies each and every day we will find ourselves in a major relapse just as I did last spring. Over SIX weeks of relapse! It was so not the way I wanted to spend my spring. And it was all of my fault. I mismanaged my disease.
MS is a disease to be managed. It is no different in some ways to alcoholism or diabetes. Diet, environment, self-control and smart decisions make for a healthy life. The opposite degrades the body at a rapid rate. I do not always make smart decisions. I am weak.
But when I do, it feels so great!
I am not the only one effecting my decisions in life. Family, friends and commitments all play a role. But it is my responsibility to tell these people, educate them on the ills of MS, so that I am not pressured by their decisions. Even after ten years of this disease I find myself describing the same issues to family members. You would think by now they would have a better understanding but until you are in someones shoes it's difficult to imagine. So that's one of my goals with The Girl with MS is to help put folks without MS in the shoes of someone with this varied and random disease.
Here's to thriving with MS!

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Anti-Inflammatory Dessert Recipe to Astound Your Friends!

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

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

Anti-Inflammatory Dessert Recipe to Astound Your Friends!

TAKEN and adjusted FROM ALEX JAMIESONS WONDERFUL WEBsite!

When cooking and ordering food, think of herbs and foods that help not hinder multiple sclerosis and other inflammatory diseases. We can work on many levels to reduce pain without the nasty side-effects of prescription drugs or over-the-counter pain pills by using natural medicine, essential oils and good sense.

You can even make life easier by ordering take-out meals that include these ingredients (think Indian food):

Ginger
Turmeric
Black Pepper
Cinnamon
Cardamon
Cloves

I keep essential oils in my kitchen to use in case I'm out of certain necessary items such as ginger, clove and cinnamon.

Here is a great rice pudding recipe which can be made with a variety of grains depending upon allergies and personal preferences.

Anti Inflammatory Rice Pudding

(4 servings)

2 cups rice milk (vanilla or plain). I also use almond milk.

1 cup unsweetened coconut milk

1/2 cup short grain brown rice

1/4 cup brown rice syrup

1/4 teaspoon each: ground cardamom, ground ginger

1/8 teaspoon each: turmeric, black pepper, cinnamon

1/3 cup organic raisins

Combine the rice and coconut milks in a medium pot over medium-high heat.
Bring the rice milk and coconut milk to a boil and add the rice. Bring back to a boil, lower to a simmer and cook, covered for about 30 minutes. Add the spices and cook for another 15 minutes or until the rice is cooked.
Add brown rice syrup and raisins after the rice is cooked. Allow the rice to cool and refrigerate in individual bowls for a few hours before serving.
Optional: vanilla is always tasty and Additional dried fruit, nuts and seeds are all good Add ons. Look at the benefits of pumpkin seeds. These alone make this meal even better. In fact, I'm off to make some for breakfasts right now!

What are some of your favorite recipes?

#takethatms

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Taking action on MS!

How are you taking action on your MS?

Helping others learn what I've learned these last 14 years is my action and I'm loving it. Here I am in Houston helping folks with with MS learn tips and tricks to manage stress and help their quality of life.

After the workshops we received our photo opportunity with Ms Madeleine Stowe, spokesperson for once a day Aubagio for relapsing remitting MS. She does not have MS but her father did. Her stories and experiences growing up are invaluable for us to better living with MS.

Here we are listening to the speaker panel. Invaluable!

I'm on the 15th floor. Funny thing about Houston is the freeway overpasses are the tallest things in use city. Except this hotel, the Fourpints by Sheraton at CityCentre, Houston.

A bit quiet for a Saturday evening. Talk about owning a place. But that's OK. I was at another lovely hotel but it was way too loud for this girl with MS. I moved here and have been absolutely content. Resting, resting and resting.

Saturday evening was beautiful. My view for the evening and again, time to rest and restore the battery.

I'm getting ready to go fishing. Was scheduled to fish with one guide but he got called out of town. I'm waiting for Mark Marmon of Metroanglers.com. Heading out for some carp fishing! Probably not a great day for it but sun is shining and sounds better than a museum or shopping mall. How much shopping can one person do? But fishing...I can do that all the time. Here's Marks website. Heading out in a couple of hours.

And here's to taking action on MS! Helping others and saying "Take That MS"!

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Take action MS in Orlando!

Dark from night and lack of street lights the big black SUV waits to pick up its target. Me. Girlwithms. Going out in style and heading to Orlando for an amazing http://takeactionms.com event with fellow life experts and the amazing Madeleine Stowe, spokesperson for Aubagio, an MS once a day oral treatment. Madeleine doesn't have MS but her father did. She shares her experiences living with a parent with MS.

LAX is always a fishbowl within which to watch folks. And that's what I did for over an hour before my flight. Mindless, flying. If you've got a driver and watch and no stressors.

A group of 80 employees from a tech company descended on lax. And they did not look Like techies at all! High, high heels, and all dressed up in black or nude. Spray tans, straight or curled hair, everything looking coifed and perfect. Their voices were a bit like cackling hens but they were having fun. 20 year olds in career mode. I remember those days. So long ago it seems from those corporate days to this life of illness and making every day count.

Sitting at Hilton, having a beer. Tomorrow is our event and I'm on from 9:30 to 2. Then fly fishing Sunday. There's so much to do here and I feel pretty stupid leaving after a day but alas, work to be done at home and more.

So, what's with the MS? It's been mellowing lately, due to stress management and more. Honestly my nutritional intake has been crap. I have nothing to credit my recent success except for stress management. It's been the true key to my recent good feelings.

Well, time to manage some stress!

Off to meditate and to breathe deep. Breathe deep my friend, breathe deep.

Check us out at http://takeactionms.com

Let's do this!

And here we are! At the Hilton Orlando helping hundreds of folks with MS learn tips and tricks to managing stress with MS. This information would have been extremely helpful when I was diagnosed 13 years ago. These events are quite the uplift and inspiration for me, meeting so many folks who understand what I am going through. The dynamics of which are still beating strong the day after.

Connecting with folks who have MS is inspiring. Learning ways to manage MS is inspiring. As Madeleine Stowe says during her presentation, so much has changed over the years. The medicine. The knowledge. It's a different world.

And one day, we will find a cure!

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2015 is here! Time to be rescued.

Wow! Another year has come and gone with many, many wonderful happenings, despite the multiple sclerosis. I've met many new MS friends this year across the nation. As the world gets smaller so does the illness. We will beat this disease!

My most recent adventure was a New Years Celebration to remember. With the Oregon Ducks going to the Rose Bowl and my home town of La Canada Flintridge producing their annual float for the Rose Parade, we had a week of fun filled activities!

My friends and I working on Our float, To the Rescue, which won the Founders Day award. Yay us! This is a self built float, one of only a handful in the parade. Which means it's all made with volunteers and donations plus some expenses.

Here is Clifford the big red lobster, as named by Oregons SMART reading program in Eugene, Oregon. A fundraiser for more seafood.

A variety of fun sea creatures getting dressed with their flowers, seeds, leaves and fruit. An amazing process overall!

Clark with his "namers", my nephews.

Here are my friends decorating Clark the Shark. Clark was named by my nephews as a fundraiser for seafood.

Some of the crew assembling the octopus. It takes a village!

The rendition of the float prior to the build:

Voila! The float:

click here for more info about LCFTRA.

"To the rescue" is a term I think of often with my MS.

What brings us down so that we need to be rescued?

What part of our MS has us feeling like the shark in the net?

Who is our Clifford the net cutting lobster that will save the day?

Friends and family and even strangers at times have rescued me. Also the wide variety of natural, alternative, nutritional and western medicines to choose from have helped. And now the new Take ActionMS program with their MS nurses can help rescue us all. The fact is we have many,many options to help us escape the net of multiple sclerosis. The first step is asking for help. Then accepting help. Then helping others.

Join us next year for the float build!

Decorating and volunteers come from all over. It does take a village.

Now...to take on 2015!

Let's do this!

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Did I just sleep through the night? A detox journey...

Did I really? Did I just sleep through the night? No hot flashes. No sweating. No body odor. For once in a very long time, my body is not sending every piece of energy it has to expel toxins.
Seven days of detox and my body is celebrating like crazy!
I started slow with my Fall Detox by adding ionized water to my regime using a Kangen filtration system by Enagic.

"A gallon a day will keep the doctor away."

The gist with ionized water is that by consuming alkalized water we can reduce the acidity in our bodies which is considered by many the basis for disease. The ionization process used by Kangen basically turns tap water into a variety of alkalized and acidic waters depending upon the users needs.

What am I detoxing from? From Life. My environs. My lifestyle. There are toxins all around and in us that we don't know. Even if we live a "healthy lifestyle" we are susceptible to many toxins around us. OK, time to do this.

Here I go...

The detox journal begins:

Days 1-3
Insomnia prior to starting program continues.
Night sweats continue.
Cramping, sore muscles.
Pain continues as usual.
Water: 8.5 ph / a gallon a day
Diet: as usual

Days 4-6
Sweats continue. Detoxing. Stink. Cog fog. Bad. Body odor! Oh man. Don't hug me.
Water: 8.5 ph / a gallon a day
Diet: remove caffeine, decaf, sugars, salt, processed foods. Aim for lighter forms of protein. Lean and clean foods.

Day 7 Tuesday.
New level of detox
Urine. Released a lot of stink.
Sweaty night then amazing clarity this morning.
Water: 8.5 ph / a gallon a day
Diet: Veggie and lentil soup, salad for lunchDinner a small, small piece of steak, some potato and green beans. continue with the lean and clean mentality. Natural and whole foods. Water at every chance.

As I sit in bed, reviewing my day, I'm feeling tired. In a good way. That way when physical and mental energy are both ready to rest. When your head hits the pillow, sleep is not far behind. And I think of the mental clarity that had come over me this past week.
Has this recent clarity been a result of the Kangen water, detoxification and hydration of the body? It's the only change I've made to a relatively stable regime. I do not know for sure. What I do know is that I am loving this feeling. My mind is thirsty once again but not for water. For knowledge.
I was driving to a meeting this morning. Usually music is playing, getting me in the mood. But today I am listening to NPR. I've had it on all week. This is reminding me of my life prior to MS. My life with a mind that could absorb like a sponge. A mind that wasn't clouded in MS related cognitive fog or "cog fog".
At the meeting my mind wasn't fighting to keep up. I was so far ahead that the questions and analyses were flying through my brain, inspiring a continued flow of mental stimulation.
Am I back? What just happened? Can it be the water?
Day 8. Wednesday.
Oh wow. Did I really just sleep thought the night? I woke once and couldn't even tell you at what time. A little moisture around my hairline but no sweat on my night shirt or sheets or me for that matter. And other then a few, sparsely positioned moments of flatulence, my body, for the first time in the past my week my body is not spending every moment expelling toxins. What a relief!
Grab another gallon of water and start a new day.
Water: 8.5 ph / a gallon a day
Diet: lean and clean. Ok. I've got this!

have Lots of meetings today so I'll be carrying and drinking bottles of Kangen filtered water.
OK...off to conquer the day. Will keep you posted!
Days 9-10, Thursday, Friday
Well, my body has detoxed. I always love this feeling after my seasonal detox sessions. My mind is clear. My emotions stable. Physical and mental at their best possible considering conditions.
My meetings were spot on this week. The cog fog diminished to a point of manageability. A few mistakes here and there when words didn't come to me. But all in all, feeling full of life.

In fact yesterday I took the day off. Played hooky. My friend and I drove up the mountains. This is my backyard, Hwy 2 in California. Of course a quick stop at mt Wilson was on today's agenda.

Amazing views along the way over the San Gabriel's.

We need to remember to take time out of our lives to enjoy the beauty surrounding us. Even if the beauty is a curiosity, the awareness we bring to our surroundings is directly related to the amount of joy in our lives.