Thursday

Free to Pee!

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.

 

 

Diapers. Really? Snaughling and Incontinence for adults

The day has come.

Diapers? But I want to Snaughle with confidence!

Really?

Yes, really. Nervous bladder nelly here has recently been living in her disposable diapers and pads. These things are nasty for the environment. They must be. And if you wear one once but not soil it, well, that's kind of gross to reuse it. And then the red rash comes. I bathe. I clean. I dry. But one day in those disposable wraps will get me every time. Especially now that it's bikini weather.

But wait, I can't completely bash the disposables. Without them I would be a mess! Like just last week when I was serving jury duty in Burbank, California. Usually I have a doctors release. And I did this year. But it came the day after Memorial Day. How could I at least not try this year as I have been recently blessed with better days? Think of the hundreds of thousands of soldiers over the course of history and what they have done or are doing for their country. Time to step up to the plate Ms Craven. Time to step up to the plate.

Well I made jury duty and the case was dismissed by noon. Phew, I made it! And hadn't peed my pants. I took advantage of the restroom then went to my car and drove ten minutes to the Los Angeles River. And decided to do a little fly fishing. I wasn't really feeling it. Body and mind were out of sync. I watched the water for a bit. Made a few castes. Then headed back to car. Either way, Uh oh. Bad choice. Quickly I got to the front seat of my car. Time for the coffee cup. My bladder needed evacuating NOW! And I could tell the diaper wasn't going to hold it all. I hadn't had anything to drink. Where was this all coming from? So I tactfully positioned myself over the cup and then proceeded to overflow all over the front seat of the car. The diaper was used, the mess was mopped. Well, That was interesting. I cleaned myself off best I could and realized how thankful I was not to have been in the courtroom. Ack!

So, although my disposables have saved me time again, the desire for reusable protective underwear is intriguing. And now very accessible.

 

I am getting ready to try out my first pair of reusable peepants. They look OK too. I should have them this week and will keep you posted on how I like them. I will be trying two of the following pairs from WearEver.

I am Excited to try something new!

I ordered the smooth and silky and the black lace ones. And for every pair I order, the company will donate $1 to the MSFoundation. Wahoo!

Check out this program with MS Foundation and Wearever:

This is great news! Talk about a win win for everyone. MS Foundation has partnered with Wearever this June to raise money to support MS Foundation’s efforts. Wearever is a health and wellness apparel brand with lines of incontinence underwear that assist those living with incontinence maintain their dignity while also being protective, comfortable and affordable. These innovative undergarments can be washed and re-used 250+ times, saving the user hundreds of dollars on disposables.

Wearever is donating $1 for every purchase of men and women’s undergarments made in June back to MS Foundation.

 

Thank you Wearever for helping us all with MS live a better live with our various illnesses. We appreciate you!This great program ends June 30 so let's all act today and see how we can help our bladders AND help others!

UPDATE: the panties came and I am sporting the smooth and silky as we speak. Go ahead, make me laugh and snaughle! While I know the underwear won't hold a pint I do know that I can leak with confidence! And that's a huge confidence builder. In fact I'm going a walk right now and now plastic diaper on my bum.

Thank you MS Foundation for all you do to help us With MS. Check out their website and to see all the great events, research and activities going on around the U.S.

Let's do this!

 

 

 

 

 

 

 

Monday

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

 

 

 

Sunday

Taking Action on MS in Pittsburgh!

With so many ways to Take Action on MS I feel blessed that this past weekend was spent with about 100 fellow MSers in Pittsburgh, Pennsylvania for Genzyme's Take action on MS campaign with Madeleine Stowe. While Madeleine does not have MS, her father did. And boy does she have a lot of good stuff to share with us all.

Knowing that I don't do that well in the heat, I was a bit nervous flying into Pittsburgh with A weather report of 91F and raining. As summer is approaching I was nervous. The MS was starting to creep up on me. I could feel it, time to take action. The week prior to traveling consisted of lots of water and good quality food and some tricks to distress the body. One of my favorite tricks iS an elixir from Orchard Flats Juicery in my home town of La Canada. The one I took was for stress and included ginger, turmeric, B12, lemon and celery. These are amazing! I took two the day before I flew out and the wave of calm over my body felt like a comforting, cooling blanket.

The week prior to flying was a busy one. On top of working with my marketing clients there was much to do for the event this past Saturday. Wardrobe called for some blue shirts so I did a little shopping. Rocked a total deal at TJMaxx when I found a Vince shirt in the color of my eyes. Clothes cleaned, hair and nails done, I was ready for the flight and the stage.

And an early flight it was to be! 7am from local airport, BURbank. Only twenty minutes door to door. Not bad. The big black car picked me up and I was on my way with plenty of clothing options to keep me looking good.

After an easy flight, I met up with the team at Vallozzis restaurant in downtown Pittsburgh. Delish! Starting with about five appetizers followed by an amazing dinner of homemade pappardelle and suckling pig, we were feeling fat and happy. Time to head back to the hotel and get some shut eye. Saturday to be a long day!

Waking in just enough time to doll myself up I left for the event. Time to take action on MS!

I checked out my set and all looked good. I was ready to go!


 

As the doors opened in cime about 100 folks wither with MS or caretakers of this with it. This is my group! As they settled in I handed out my cheat sheet on managing stress with MS. I love this sheet of tips and tricks and wish I had it fourteen years ago when I was diagnosed. Not a day goes by that I don't use something from this sheet:

There are two more Take Action on MS events coming up. If you are in the area of Las Vegas or Atlanta, join us!

There's so much to learn at these events. From managing stress to exercise to emotional issues. And then we all sit down for a lovely lunch and meet Ms Madeleine Stowe and hear about her experiences as a child with a father with MS in a time when they knew nothing about the illness. Her story is a good one. And she's a doll. A very nice, supportive person. Just who we need and want to help us build awareness for the MS community.

So how are you taking action on MS?

 

 

 

 

 

 

 

 

Friday

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.

 

Monday

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

 

Multiple Sclerosis in the News

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