Sunday

GUEST BLOG: Jade learns about managing MS and more!

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

 

Wednesday

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

 

 

Saturday

Anti-Inflammatory Dessert Recipe to Astound Your Friends!

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?

 

 

 

Monday

What does Orange mean to you?

***Here's a repost fom last fall. ***

And then, a random orange balloon floats into my yard.

I search about but from where it came I can not tell.
Halloween is coming upon us. A party could be near but nothing in sight. I accept it as a message and am inspired to explore.
Orange was a color I never wore nor associated with much until the past few years.
Orange has become to mean new things other than Halloween and pumpkins. It is the color for multiple sclerosis. The MS Orange.

http://www.goodiesbygail.com/index.php?main_page=product_info&products_id=489

Embroidered patches available here


http://www.msstoreipp.org/imprinted-orange-balloons-pack-p-90.html


http://www.etsy.com/listing/125780055/multiple-sclerosis-nail-decals-ms-nail?ref=market


So what does the color orange stand for? A friend found this online and shared it with me:
Orange

Orange combines the energy of red and the happiness of yellow. It is associated with joy, sunshine, and the tropics. Orange represents enthusiasm, fascination, happiness, creativity, determination, attraction, success, encouragement, and stimulation.

To the human eye, orange is a very hot color, so it gives the sensation of heat. Nevertheless, orange is not as aggressive as red. Orange increases oxygen supply to the brain, produces an invigorating effect, and stimulates mental activity. It is highly accepted among young people. As a citrus color, orange is associated with healthy food and stimulates appetite. Orange is the color of fall and harvest. In heraldry, orange is symbolic of strength and endurance.

From: Color-Wheel-Pro.com

I don't know about you all but I'll take the color Orange all day long just for it's meaning. The one issue I have with orange is that it is heat provoking as a visual element. And we are already overheated! The nice thing is that blue is the opposite of orange on the color wheel and blue is very cooling. The two work well together.


 
I remember the use of orange in marketing/advertising. Its stimulates the appetite. Ever wonder why many foods out there are either orange or labeled in orange?

http://en.wikipedia.org/wiki/Doritos
http://www.collectingcandy.com/wordpress/?p=7187
http://mojosavings.com/free-kraft-mac-cheese/


I do know that it's the color of Hermes. Oh yeah, that orange I know!


How cool would it be for Hermes to create a custom scarf as a fundraiser? You know, something orange...

http://usa.hermes.com/woman/scarves/scarves-90/silk-twill/orange.html



I bet someone like Nancy Davis at EraseMs.org could pull this one off! She always has lots of cool ideas and fundraisers: Click on images to shop!

http://erasems.org
http://erasems.org


And then I just found this cooling scarf, also a Nancy Davis project. Many of us find cooling scarves quite helpful. This is a nice, fun orange one.


So what does orange mean to me? It means a lot more than it did even a few weeks ago. Most importantly it unites everyone with MS across the globe. No language barrier. Nothing. Orange is orange.

Here's to orange!

I'm off to carve a Jack O Lantern, eat some reeses, put on my orange tee shirt. I'm off to be Orange and
"represent enthusiasm, fascination, happiness, creativity, determination, attraction, success, encouragement, and stimulation."
Here's to saying #thatthatMS!

 

Saturday

Seeking Quiet to Restore Battery

(An earlier post. seems a good time to share again.)

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.

 

Sunday

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"!

 

 

Multiple Sclerosis in the News

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