Thursday, February 26, 2009


This past Sunday was "Oscar Night". If you missed it, it was actually a pretty good show this year. Hugh Jackman was an incredible host - he is a true triple threat and was singing and dancing and making jokes. Plus he is just darn cute. But I digress...

Every year when the Oscar's come on I get a little nostalgic. When I was growing up my Mom and Dad would host an Oscar Night party every year. While the "grown-ups" ate dinner and watched the show in the den, my brother Van and I would watch from up in the playroom. There was always a ton of yummy food, people cheering and booing over who won and who lost, and Van and I were allowed to stay up way past our bedtime!

As you can probably guess, movies were a big part of my life growing up. We loved watching movies, in the theaters, at home. I can remember seeing the first Batman movie (circa 1989) with Mom, Dad & Van on the weekend that it opened, while we were down at the beach. My Dad often took me on "Daddy-Daughter Dates" and we would have lunch and see a movie together. A couple of weeks ago we even had a mini-date of Chick-fil-a and "Journey to the Center of the Earth" on his new blu-ray player and in 3D! (Btw, if you have double vision, you must place 3D glasses over your prism glasses in order for 3D to work properly! haha)

Okay, Caroline. I get it. You like movies.
But that's not the real point here. Keep reading...

It's about escapism. Getting away from it all.
Turning your mind off for a little while.
Maybe your thing isn't movies. Maybe it's Rock Band or the Wii, or tennis or golf. Maybe it's scrapbooking or chasing your kids around in the yard.
It's about playing.

The National MS Society puts out a wonderful magazine called "Momentum". The latest issue just arrived last week and this excerpt caught my eye:
"We defined play as something that could make us feel happy, joyful or cheerful. Some members said that play made them feel more alive; others said it helped them take pleasure in small things. I forget that I have MS when I play." -Nancy Chamberlayne

But this isn't just about MSers! We all need to play more. Because Nancy is right- playing makes you forget about the things that are stressing you out the most. It gives you a mental health break, gives your mind a mini-vacation from all those things that keep you up at night.

In the recent past I have found myself using a phrase that came out of nowhere. I think it originally started with babies: Being able to give Paul & Karen's new baby Courtney her bath "filled my soul with joy". Going to visit Jennifer, Vince, Lola & Lucy "fills my soul with joy". I love playing with babies. I also really enjoy sitting in my office (aka Craft Room) and making homemade cards for people's birthdays. I still love going to the movies. I like to color with crayons. I find baking very relaxing. I love to dance, even though it is harder to do nowadays. I love watching my Pace and HSPS kids perform. I enjoy being a college student again and learning new things. The list goes on...

The older we get the more important it is to make time to play.
I am lucky to have so many things and people that fill my soul with joy and even have the power to make me forget I have MS for a little while. :-)

Sunday, February 8, 2009

I'm. So. Tired.

Fatigue is one those symptoms that is completely intangible. You can't always recognize it, but MSers always feel it. Of course everyone experiences fatigue. No one is immune to it and as we age we all fatigue more easily (one of the many joys of getting older!)

MS fatigue is hard to explain and like nothing I have ever known. I am slowly starting to learn my own signals and symptoms of it, though I am told that it can differ greatly from MSer to MSer. Have you ever had the nightmare where you are trying to run and simply can't? Or you can run but only in a weird slow motion-molasses type of run? MS fatigue is kinda like that - Dr. Thrower describes it as "trying to walk through a swimming pool while wearing a fur coat"!! ha!

You want to walk at a normal pace, and yet your legs will just not cooperate. You will them to move and its as if the signal just takes longer to get to them and finally they cooperate, but only in Molasses-Mode. Other things stop cooperating too. Your feet don't pick up off the ground as easily (the clinical name is "Foot-Drop"), your hands become weak and you find yourself dropping things more often, even having trouble grasping things like pens and your toothbrush. I always know I am drastically out of "spoons" when can't hold my housekey well enough to maneuver it into the front door lock and it takes me more than 3 tries to get the stupid key in and then turn it! I have learned to laugh at myself when this happens and then I head straight into the house and straight into my pajamas for bed!

MS fatigue doesn't play by the rules. Sometimes a night's sleep returns you back to "normal". Sometimes you wake up after a perfect night's sleep and feel like your body has been pumped full of lead. This morning was one of those mornings. My sweet husband finally convinced me to take some provigil and that seemed to help a little. We think that my body is just adjusting to the new medication and its hard work getting used to it.

Oh! I started Copaxone last Tuesday. I have high hopes that it will work for me, though getting my body used to a new drug is a slow, painful process. Hopefully 7-10 days I will be as good as new. It is still a sub-cutaneous injection (aka little needle) but I have to do it every day. Also its crucial to rotate injection sites and I have to have 7 sites that I use. So I assigned each site a different day of the week: right on Wed, left leg on Mon, etc. I even made up a mini-dance routine so that I would remember which day goes with which body part! hahaha!
Maybe if I get inspired I will put my Copaxone dance on youtube!!