Thursday, February 28, 2008

Walk MS

You knew it was only a matter of time, right?
I am putting on my red tennis shoes (which are very stylish by the way) and walking to raise money for MS on Saturday, April 19th at the Marietta Square! I am putting together a team of champions to help me raise a few bucks and to walk with me...and red shoes are a MUST!

For more info follow the link to my webpage:
From there you can join Team Wearing Red Shoes and/or donate to support us!

Email bombardment will soon follow...
Thanks in advance for your support everyone.
I am very excited about my first (hopefully of many) MS fundraising events.

Tuesday, February 26, 2008

Rock & Roll

As many people know, I am in a rock band. I started singing with PARADOCS back in 2003. The group was started by a couple of doctors (my dad being one of them) and we have done many concerts to benefit various charities over the years. Well, this past Saturday we were asked to perform a 1.5 hour set at Cowboys to help raise money to save the historic Strand Theater on the Marietta Square. What can i say? We love to rock out for a good cause. The numbers are still coming in, but last check we raised over $7500 and I think people had a really good time, too. I know all of us in the band sure did.

While I was up there I felt pretty great. The adrenaline, the crowd cheering, music I love to sing....I held up pretty well. I got pretty dizzy once (luckily we thought ahead and had a stool nearby). I sat for a song, dizziness subsided. My worst fear was the "boa constrictor" making an appearance which would make singing quite a challenge, but he stayed away. yippee!

In the hour that followed, however, my body let me know exactly what it thought of me pretending I was a rock star...and I don't think it approved. My feet both went numb fairly soon after and have stayed numb since then. Its annoying and i just have to be careful so I don't fall or anything. Sunday morning brought the ever-popular burning leg pain and....the Boa Constrictor! I knew he would show up sooner or later, but I feel that I can't really be too mad because he let me have that hour and a half onstage without pestering me and that was pretty damn cool. So he has been hanging around for the past 2 days also. My vision is crap and trying to read for longer than 10-15 min makes me dizzy and gives me a raging headache (and my magical glasses aren't doing squat and my new magical glasses aren't ready yet! boooo!)

I was joking with my dad about having to pay the piper after a night of rockin out. Even if you dont have a neurological disease you still have to pay up if you push your body past its physical limits. I guess what is so frustrating for me is that a year ago my physical limits were more on par with a healthy 28 year old. Now they more closely resemble that of a 78 year old! hah. So I guess if I want to be a rock star for a night and sing a few songs with my band, not only do I have to rest all day beforehand but I have to rest for the 48 (72?) hours afterwards as well, not to mention pay the price of whatever painful/annoying symptoms the MonSter wants to throw at me.

So I can't feel my feet and my legs hurt like hell and my chest feels like it is in a vice and the headache is beginning from trying to write/read this entry....
But you know what?
It was still Totally worth it.

Wednesday, February 20, 2008

Balancing Act

EEK! I feel guilty that I have not written in so long. I don't even know where to begin!

My trip to Cherry Hill was FABulous. Jennifer and I have been friends since we were little girls and she is so amazing. Seriously. She is. She and her rockin husband Vince have this gorgeous house and 2 incredible daughters and they are just really awesome parents. Seriously. I am in awe of watching them with these boggles my mind. Lola will be 4 this summer and oh boy, she is strong-willed and brilliant and talented and funny and so sweet. I know I am biased being her Aunt and all, but Seriously. She let me read her a bedtime story and tuck her in one night and it goes like this,

"Good night Lola,"
"Good night Aunt Caroline. Love you,"
"Love you too, Lola,"
"Aunt Caroline? Can I please have Bumblebee cereal in the morning?" (aka Cheerios)
"Yes Lola, you can have Bumblebee cereal,"
"Thank you Aunt Caroline. I love you. Good night,"

And she's asleep. No fuss, no "Can I have water? I need to go to the bathroom? Can I have one more story?" Sure, she has her moments (don't we all?) but I totally adore this child. And her new sister Lucy is 4 months and cooing and smiling (ok and vomiting lots, but she can't help she has bad reflux!) She welcomed me to Cherry Hill by puking not just on my shirt, but completely Down my shirt. Ahhh, the joys of babies. But other than that she is just plain adorable and I snuggled and held her until my arms were sore but I just couldn't put her down!
The only downside to my trip was the part where I had to say goodbye. Good friends like the Frankowski's are pretty special.

Upon my return from NJ, our friends Steven & Tiffany stayed with us while some work was being done on their house. It was actually really fun! Sort of like playing College Dorm except we didn't all have to share one bathroom! hah I am trying to become a better cook, so I practiced a meal on them and it wasn't terrible. I have zero confidence when it comes to my cooking. I am working on it though and as I make more things that aren't terrible, I feel better about my skills in the kitchen.

The day after they went back home, Chris & I left and spent a long weekend in Savannah. It was relaxing and fun and just what we needed. So now we're back to normal life. We bought a new TV- some fancy enormous flatscreen HD thing - so we are trying to figure out where to put it which will inevitably involve rearranging our living room. Anyone wanna come help move furniture around? ;-)

As for health stuff my body is trying new tricks to piss me off. When I try and do too much or don't get enough sleep or it retaliates by making one or both legs hurt with fiery nerve pain...or my vision goes so double that I can't see squat, get a headache and run into things...or its newest trick: spasticity. The aforementioned "boa constrictor" aka MS Hug (the name I loathe) is one form of spasticity. Basically when the CNS (central nervous system) is damaged (demylination and brain lesions, anyone?) it does this wacky thing where it makes certain muscles contract and/or spasm for no reason at all. Sometimes it is only mildly annoying. Other times it is very painful and makes me crabby. I am playing around with new medicines designed for MS spasticity. Of course, each new drug comes with a price: the glorious side effects!

I have decided that Everything in life is a balancing act. We are all juggling 50 million things. We work hard to make money to provide for our families...but then we are working so much we don't see our families. Or we eat too many cookies this week but then don't go exercise at all because there are too many other things to do. Or we don't get enough sleep and pay for it the next day. Or we take an extra Baclofen and Lyrica so that we aren't in pain but then we either can't stay awake or if we can, we are so loopy it takes us 20 minutes to comprehend a joke on The Daily Show! Finding the perfect balance with anything is a real struggle sometimes.

I don't have any answers yet, but I keep plugging along. Some days are better than others. Some days are god-awful and others are simply fabulous. But that's true for all of us, chronic disease or not.

Other things to report, sadly, according to my specialist eye dr, my vision is getting worse (has gotten worse? whats the correct grammer here??) Whatever. It didn't get better and it didn't stay the same and still only speculation as to why. Brain stem damage? perhaps. My body freaked out when the MS invaded it causing the eye muscle to go kaput? maybe. A second neuro-muscular disease? Unlikely, but still on the table. At some point Why doesn't matter and you just have to say, "Ok fine. So where do we go from here?" (BtVS know you wanna sing the song) So my Dr prescribed a stronger version of magical glasses to see if they will do anything to help, come back in 3 months and we will see if its better/worse/same. I treated myself to cool, funky new eyeglass frames. If I can't see, I should at least look good, right?

So it is about time to pay my daily respects at the Altar of the MS Gods....or as some people might call it, Take A Nap. I find that if I skip said nap I usually pay the price around dinnertime(see aforementioned methods of MonSter retaliation!) And tonight we are meeting some of our favorite people for pizza & trivia which I plan on enjoying, so Naptime it is. I hate Naptime. There are at least 35 things I would rather do, possibly more, but hopefully if I suck it up and sleep a while I can enjoy my evening with little interference from my body.
Until next time....

Monday, February 4, 2008

Out of town

I am headed out of town tomorrow to visit my childhood best friend, Jennifer and her family. I am so happy to get to see Jenn, Vince, their daughter Lola and meet their newest daughter, Lucy who is almost 4 months old. SO excited!

May try and write some while I am up there about several things floating around in my lesioned-covered brain...but if not will write when I return.
Have a happy week everyone,