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....

1 comment:

Kempton Mooney said...

I'll come help move furniture, you just pay for my ticket down.

Can't remember if I told you or not, but I put a link to your blog on mine: