Just Pick a Color

And I picked orange! In honor of MS Awareness Week!

Flash Freeze, Capitol Hill and the Color Orange

What are you doing for MS Awareness Month?

There is a lot happening this month as we bring awareness about life with multiple sclerosis, the complexities of the disease and the hope for a better future via a cure. Folks are doing all kinds of cool things all over the country to elevate awareness. Here are some things that caught my attention.

Orange, orange, orange. Orange is the color of MS and lots of folks will be making flashy statements with their wardrobe, especially next week during MS Awareness Week (March 12-March 18). This is a color that is not readily available in my closet so I may opt to shop for an orange scarf!

Flash Freeze. This is so cool. Organized by our pals in NYC, a flash freeze demonstration will hit the streets of Manhattan on March 13. The team will focus on how MS stops people from moving hence the freeze. Details can be found here: Flash Freeze in NYC!

Feeling Political? Check out the happenings at the 21st Annual National MS Society Public Policy Conference in Washington, D.C. Our friend Lisa Emrich is live on Capitol Hill reporting on the event. Check out her updates here: http://blog.nationalmssociety.org/

Edible Support. I even came across this great team raising money to benefit the MS Society through sales of delicious cookies. Edible Arrangements in New England is donating a portion of their sales from every Orange Blossom arrangement to the MS Society. And, they deliver! Orange Blossom

And, there’s more. A lot more. I couldn’t possibly list them all.

• The team over at The Multiple Sclerosis Associate of America (MSAA) put together a great list of ways to show support: MSAA

• The National Spinal Cord Injury Association considers every month MS Education and Awareness Month and put together a list of some of their MS stories: National Spinal Cord Injury Association

• The Multiple Sclerosis Foundation (MSF) is talking about how Allsup promotes awareness about folks living with MS and how to get SSDI benefits. MSF

So, how about you? What’s happening in your neck of the woods?

Be well,
Christie

Happy Monday MSers!

Free Ride on the Merry-Go-Round

Vertigo.
An involuntary
merry-go-round ride.

I experienced a pretty radical round of vertigo this past Sunday night. It was totally wacky, like being on a merry-go-round sans looped in circus music and I couldn’t get off the ride. It used to be that being on a rotating circular platform was a ton of fun but not when it’s involuntary!

Alas my amusement ride was not amusing and I was near panic. One minute everything was normal and the next moment my living room was spinning around me. Naturally I felt unsafe and filled up with anxiety. When I looked straight ahead at the front door it rotated to the left, returned to normal and then rotated to the left again. Other items in the living room spun around me. “What is the TV doing over there? This is insane, somebody get me off this crazy thing!” It was near impossible not to totally freak out.

All of my sources tell me that bouts of vertigo are pretty short lived and that I should continue to move about my life. Yet I was nervous. My first impulse, when the spinning finally stopped, was not to move around for the rest of the night. So that is exactly what I did. I plopped on the couch and didn’t move. Luckily, I found some strength the next morning and moved about my day as normal. And no more vertigo attacks for the rest of the week. Whew!

Apparently vertigo is a fairly common symptom of multiple sclerosis, affecting 20% of us MSers. How about you? Ever experience this type of involuntary merry-go-round ride? I would love to hear from you.

Take care and be well,

Christie 

Memory Games

With 50% of MSers living with cognitive issues, it is normal for us to forget things. This can be quite challenging and frustrating. For me, I tend to forget to take my meds. Funny thing is I’d like to forget to take my daily injections but for some reason, I never forget these. Nope. I always remember the shots. What I tend to forget, however, is taking my nerve pain medication, especially on the weekends or when I’m traveling or when I fall out my normal routine.

When this happens, it is not infrequent that I work myself up into a frenzy playing memory game. Let’s call it the running-around-in-circles-retracing-my-steps-asking-myself-over-and-over-and-over-again-if-I-took-my-meds game. You know this routine, right? It happens to me all the time. I’ll be in the middle of doing something really fun and suddenly I’ll panic. “Did I take my medicine this morning?” I’ll back track my steps, visualize myself standing by the kitchen window, opening the medicine bottle, pouring out my dosage, taking a sip of water and swallowing my pills. Trying to remember, I’ll press my palms into my face in anguish, “Did I take my medicine? I swear I did. But, I can’t remember! What will happen if I actually took the meds earlier, forgot that I did and then took a dose right now? Will my body convulse with the extra dosage? Is there such a thing of overdosing on Gabapentin? Will I become an addict? Is it even possible to get addicted to this stuff? Good grief!”

I am not sure what’s worse: forgetting to take my meds or the crazy routine I go through trying to remember if I took my meds. Seriously. I need to find a better way to remember and reduce my anxiety. I must stop the madness.

Here are some ideas to stop playing these silly games and help me remember stuff:

• Remind Siri to remind me. After all, the new iPhone 4s is seriously amazing.
• Post Its are oldies and goodies. Simply said. They work.
• Tie a string around my finger. But, I don't see how this will solve anything. I can see it now, "What is the string for? What was I supposed to remember?" Let the games begin.
• Wear a task bracelet! I found these "List-It" bracelets at a Japanese market and think they're pretty cool. Simply write your task and wear it! Must try.

On Feb 12 at 12pm remind
me to take my meds!

Write down your task and wear it!

Tie a string around your finger!

And, for good measure, if I try all four of these tips at the same time, I will be sure not to forget to take my meds. Right? At least I think so.

So, what are your tips? I would love to hear from you. What are some of the tricks you use to help you remember things? What are some of your favorite stories?

Hope all is well.

Best always,

Christie

P.S. here is an excerpt from the National MS Society describing cognition:

"Cognition refers to a range of high-level brain functions, including the ability to learn and remember information: organize, plan, and problem-solve; focus, maintain, and shift attention as necessary; understand and use language; accurately perceive the environment, and perform calculations. Cognitive changes are common in people with MS—approximately 50% of people with MS will develop problems with cognition".

Survey Says! 86% of MSers Deal With Fatigue

Hello Friends,

Recently, over 10,000 MSers completed the MS in Focus online fatigue survey. The combined results are in and it turns out, 86% of us say that fatigue is one of our three main symptoms. That is a lot.

We all know fatigue is a big deal and it seems fairly obvious that a very high number of us claim this is a main symptom. Yet compiling stats like this is important and I, for one, am hopeful that it will fuel the need for more research. More research may lead to better treatment and improved management of this overwhelming symptom. Better treatment and management of MS fatigue will make us feel better. I like the sound of that. 

I encourage you to peruse the full survey by clicking this link: MS in Focus: online fatigue survey.

Be well,

Christie

Tour de Christie

I love to ride my bicycle. This one morning in late October was no exception. And I could not have asked for better weather. The sun was shining, the temperature was warm and there were no head winds. Perfect biking conditions.  I strapped on my helmet, hopped in the saddle, clipped into my pedals and took off, eager to ride as quickly as possible because ultimately that is what I love the most about riding.  

As I rode, I noticed there were more cyclists around than I normally encounter on this quiet path. There seemed to be organized groups with some wearing matching colored jerseys. They appeared to be part of some kind of cycling event and huddled together in groups. I remembered that the MS ride was this weekend yet thought I read that the finishing line was in Encinitas.  I paid little attention and continued my cadence. Tick, tick, tick. I gained speed and rode on, wondering all the while if it was possible that the Bike MS cyclists would end up on this quiet path 30 miles away. Hmpfh I rode on.

I only rode for two more minutes before approaching one of these groups. All members of this club wore orange jerseys, MS orange I might add. The group was resting on the sideline, seemingly finished for the day, so I stopped. I asked if they were riding for the MS ride. Yes, they were. I told them that I live with MS and one rider asked some questions about my diagnosis. We talked about what type of MS I live with, for how I’ve had MS and a little about my cycling. I was touched and I thanked them for riding that day. I clipped back into my pedals and continued riding with a new motivation. Riding for a cure. I am, I can, I will.

I clipped away and I slipped behind the stream of another cyclist. It was just the two of us for a moment or two, yet he, being a more experienced rider, took off, leaving me to ride alone.  The chain, crank, cog and pedals ticked away, kept me company as I cycled along the path. I took on a small incline and as I climbed towards the top, pop! A flash bulb went off.  To my right. Flash! To my left. Another pop! Directly in front of me. Flashes went off as my picture was taken. “Oh dear,” I thought, “I am no longer riding a quiet path.” I felt famous and gave a thumbs up to the camera as the last flash went off. Pop! In the distance, I heard a crowd begin to roar.

Thumbs up to the camera!

It was at this point that I realized this IS the Bike MS event and thought I should get off the path, not wanting to get in trouble. Yet I felt forced to follow the route that was now outlined with orange ribbon. MS orange. There was no escape. The path had narrowed and had no exit point. Besides……my fans showed up so I couldn’t leave.

It was like riding the Tour de France and racing towards a stage finish, or the big finish, in my case, of Le Tour de Christie. The crowd escalated. The cheers roared louder and propelled me to ride faster and faster. Yet I rode with a slight pang of doubt because I wasn’t supposed to be there. I didn’t have an event number on my back. I reasoned with myself, “It’s okay. You can ride, you have MS.” The crowd grew denser and louder as I continued on, motivated by their support. Whistling fans waved flags of orange from behind the route markers and I heard the race announcer’s voice piping through speakers in the background, congratulating the riders. As I approached the finish line banner, I was out of the saddle with a huge smile on my face. “Oh yeah. I am doing this. I am taking the yellow jersey.”

I crossed the finish line, with my hand proudly held high in the air. “I have MS and I just won the Bike MS ride!” Well, not really. But it sure seemed like it. It wasn’t even a race.  But I won my own tour. Tour de Christie. I proved something to myself that day. I am. I can. I will.