Work, work, work

Well apparently going back to college is pretty much a full-time job...except I pay them instead of getting paid. It all feels quite backwards after almost a decade of being in the work-world. I know what I am doing is important and it has become important to me (plus I am enjoying it) but man, it is a LOT of work, and I finding myself with very little energy left for much else, be it social, volunteer work, or otherwise. 

And then MS will rear up its ugly head for no reason (with worsening of symptoms or the short-lived new symptom) and then I have to force myself to stop and Rest because I have vowed I am NOT going to relapse AGAIN in 2008. 2 in 1 year is quite enough, thank you very much. I really want to be able to go a whole year without relapsing, but Baby Steps...I WILL make it to 2009! 

 

It is going to take some re-prioritizing for sure if I plan on continuing school next semester, which I do for now. I am going to have to cut back on activities and not accept new things that will add time, stress and take away my spoons (I just declined serving on the Steering/Host Committee for "Music, Mummies, Martinis for MS 2009" and I hated it, but frankly I know it would be a lot of time/energy that I don't have right now). It it really hard because I like being busy even though my body doesn't anymore. Plus I hate saying no to people and things I love. But I have to look at the bigger goals of A) getting my college degree and B) staying healthy! 

So sorry this is short and probably disjointed. I have 3 major papers due Soon and an exam Friday another Monday. College is a LOT of work! I guess that's why they don't just hand out degrees for a nominal fee somewhere. 

Like all great things in life, you have to really work for it. 

Much love always...XOXO

Quotes to share

Both of these are pertinent to living with MS, but also to living in general! 

I am still working on doing both of these myself :-)

"Several years ago I began the process of deliberately slowing myself down. When I begin to feel disconnected, I walk slower, type slower, and pay close attention to my task, rather than allowing my mind to whirl around. I practice deep gratefulness during those few moments." - Louise Monacelli

"We are never happy until we learn to laugh at ourselves." - Dorothy Dix

MS September Safari

Here is Team Wearing Red Shoes at the Safari at Zoo Atlanta. We had a great day hunting for the cure. Our fundraising leaders were my nieces Ella and Emory! Way to go ladies!!

I had not been to the zoo in many years and getting to see it with my nieces and nephew made it that much more fun. And all for a great cause. 

Now for those of you looking for future events (and good excuses to wear those red shoes) get out your calendars! Here we go...

**SAVE THE DATE**

WalkMS 2009 Marietta
Saturday, April 11, 2009

**Team Wearing Red Shoes has a first place title to uphold!! 

Hope you can join us!! Will be sending lots more info in the months to come...

Music, Mummies & Martinis for MS

Saturday, March 21

**For those of you looking for a more upscale way to fight MS, this second annual event promises to be simply fabulous. More info will follow soon...

MS Awareness Week

March 2-8, 2009

**Get out your orange and wear it proudly this week to let people know about MS, what it is and how to help. More info to follow...

There are so many ways to participate and be a part of the "hunt for the cure".

Which event will you be joining? 

C'mon...you know you wanna wear those red shoes... 

Who Are People With MS?

Today Mom and I attended a NMSS Meeting/Symposium at the Hilton downtown. It was a great event with an excellent turnout of MSers, their family and friends. Lots of assisting devices: canes, crutches, walkers, wheelchairs and scooters. And lots of MSers who "look as good" as I do, in other words you can't tell they have MS just by looking at them. 

I recently filmed a short video clip for the NMSS which will play on their website when people donate to future WalkMS and BikeMS events. Several people participated in the filming, most of us living with the disease, and all of us living with very different levels of disability/disease. Yet seeing each of our clips, you realize the similarities. We all live with the uncertainty that tomorrow will bring. Will it bring a relapse? Will my regular symptoms be worse? New symptoms?? No one knows. One young man talked about balance problems and how handrails had become his close friends. :-) I look around and everywhere people are nodding their heads in agreement. 

As different as MS symptoms and its people can be, in many ways we are exactly the same. We are people with families and friends and dreams about how we want our lives to be. Alot of us are having to tweak those dreams a bit, but we still intend on living out as many of them as possible! Read on...this was something sent to me by a friend in my MS Women's Group.

Warning: contains wonderful sarcasm!! :-)

Who Are People With MS?

We are your parents, your children, your brothers and sisters. 

We are the person down the street.

We are that lady or fellow who may walk a little "funny" at the grocery store. 

We are the people that you "tsk, tsk" over because we might "look too good" to use a handicapped space.

We are your peers.
We are human beings.
We are the faces of Multiple Sclerosis.

A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing, class, finances, educational background, language or religion.

We are both able to walk unassisted or we may have to use canes, walkers and/or wheelchairs. We jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between and are at every level of physical ability. 

Of course we "look so good" while we are doing it. 

We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable.

We may be able to do that something tomorrow though, or maybe next week. 

Multiple Sclerosis is like that. We are like that.

We are visually impaired and we are not. 
Some of us are hearing impaired, yet all of us occasionally have people talk louder to us.

"HOW ARE YOU DOING??? YOU LOOK SO GOOD!!!" 

Of course we do. 

Thank you very much. 

We are, in fact, the very best looking people in the handicapped community. We have secret pageants every year to decide which one of our members is the best looking. Billy Crystal emcees, as his character Fernando: "and you look MAHVELOUS my dear, absolutely MAHVELOUS."

That is us.

We are brave. We are fragile. 

We want to live and we want to end it all. 

We look for support and we want to stand alone. 

We are every person. 

We are the people with Multiple Sclerosis. 

And we are People, Just Like You....

~Author Unknown

Pay the Piper

This past Saturday my band Paradocs played a gig at Cowboys. It was a benefit concert and all proceeds went to the restoration of the Strand Theater on the Marietta Square. We all love this historic area and were happy to donate our time and energy to raise money to rebuild this great venue. We had a great time doing some old songs and new ones. We were thrilled with the turnout, too. I rested up all day in preparation for the big night and I also tried to really take it easy the day after, too...

But nevertheless I am now sick with a nasty chest cold. 

Maybe this happens to normal healthy people too. Or maybe people with MS that are on immune-suppressing drugs shouldn't be running around pretending to be rock stars for 2 hours, even if it is for a good cause. 

I dunno. I just know that it stinks and has me feeling really down. I know it is only a stupid cold, but I can't help but feel depressed right now. 

I think there should be a rule: If you have to live with a chronic disease that affects you with symptoms every single day of your life, then you should automatically be exempt from getting other things like the common cold or the flu. 

So while I totally had a blast singing with my band on Saturday, it leaves me wondering if people with MS should be doing such things. Not that I plan on sitting at home like a vegetable for the rest of my life, but what is "too much" for a person with MS? All my books say "Don't overdo it," but what IS overdoing it? How do you know your limits, stay within them and still manage to be a normal person that Does things??

Because while getting a cold/infection is a bothersome nuisance for most people, for MSers it can be far more serious. Because of the medicine I take to control my disease I can't fight off everything that healthy people can fight off. Furthermore, when I get sick with even a tiny chest cold it really pisses the MonSter off, and he rears his ugly head by making all my MS symptoms worse, too. So I am in a lot of pain and my vision is Crappy, my balance is totally off (aka I look like a drunk person when I walk) and I am sneezing and coughing and pretty darn miserable. 

Who knew there was such an icky price to pay for being a one-night-only Rock Star (who makes zero dollars because it was a charity event!) 

Can we just find a cure for this stupid disease already??

I've got a life to live here!!

A Celebrity Sighting

In my last post about going back to school I mentioned Zoe Koplowitz. I had planned on going back after the fact and adding the link to her website so people could read about her. But then of course I forgot to do it (typical blonde-MS-brain!) But THEN fate stepped in, not only reminding me, but warranting an entirely new blog post! 

A couple of months ago my mom and I attended a Wellness Expo hosted by the NMSS and Zoe was the guest speaker. I have heard a lot of speakers at various things over the years, but she reigned over them all. She was the perfect mix of sincerity and sarcasm, humor and hope. She had everyone laughing and crying at the same time (“Laughter through tears is my favorite emotion!”) So of course I bought her book “The Winning Spirit: Life Lessons Learned in Last Place”. 

You see, Zoe holds the Guiness Book World Record for the World’s Slowest Marathoner. This November will be her 20th New York City Marathon...and she has completed every single one with the MonSter on her back.

So after my “Just Do It” post, I emailed Zoe to share my blog with her and thank her for inspiring me to go back to school. And I thanked her for being such a great role model for MSers, too. 

So, Chris and fly to NY for Dom & Alexis’ wedding (more on that later) and we have to take the train out of Penn Station to get to Long Island for the festivities. So it is Friday afternoon in Penn Station and as on most afternoons, I am dragging…and not just my rolling luggage behind me…my spoons are depleting rapidly. So when I spot a Starbucks I am thrilled at the prospect of a caffeine jolt to carry my through until I can get a nap in. Then I realize...standing in the line behind me, decked out in a gorgeous purple top, with equally fabulous jewelry and her signature magenta cane….is Zoe! I alsmot fainted right there in Penn Station. I mean, what are the chances?!? I walked right over, stuck my hand out and introduced myself, 

“Hi, Zoe. My name is Caroline Kulinski. I heard you speak in Atlanta this summer and you probably don't remember me, but I actually emailed you recently to thank you for inspiring me to go back to college.” 

“Oh My Goodness! Of course I remember you! That was the sweetest email I have ever read. I cried when I read it! ”

Then she told me that it was her 60th birthday that very day and she and her best friend were headed out to celebrate. I hugged her, and thanked her for everything and wished her happy birthday and told her I would email her again soon.

So check out my friend Zoe’s website: http://www.zoekoplowitz.com/

I should have known that Zoe and I were fated to meet again…In her book, she recounts the story of her very first NYC marathon back in 1988. As she crosses the Verrazano Narrows Bridge to start the race, she finds herself singing “Follow the Yellow Brick Road”. 

No I am not kidding. If you don’t believe me, buy the book. It’s on page 45. ☺ 

So really, I should have known. Anyone who quotes The Wizard of Oz in her book is a friend in my book.