Old Sahara Eyes

Do you ever feel like you are part of a weird science experiment? I mean, Life does wacky things for sure, but our bodies are unbelievable organisms that are often even wackier. 

As if MS isn't weird enough all by itself, I now seem to be experiencing strange, new symptoms courtesy of either my ever-bizarre body or else the lingering side effects of the Massive amounts of steroids I have recently consumed. 

So to update I finished my round of Solu-medrol, 3 days worth, and a lot of my symptoms have started to slowly subside. Others are still lingering, but I am hopeful they will move along shortly. However, I seem to have accumulated a few new symptoms, notably my severe Sahara Eyes. I have heard the term "dry eyes" before. I have experienced dry eyes before, usually during allergy season, or perhaps after a night of heavy drinking...I mean, I have Heard that people experience dry eyes after heavy drinking...I wouldn't know personally about such things ;-) Anyway, we are talking Severe dry eyes. I felt as if my eyes suddenly up and decided not to produce tears. At all. Nothing. Nada. No watering when I yawned or even when I held them open to try and force them to water. Dry as, well, the Sahara desert! 

This new fun started last Wednesday, so today the Ophthamologist was able to fit me in for an eye exam. Turns out I wasn't crazy. After a really weird test where they put a special piece of paper in your eye for 5 minutes to see how many tears you produce in that amount of time, the verdict: 0 Tears Produced. Seriously?!?! My eyes are actually producing NO water/tears whatsoever?? Yep, you heard right. 

Zero Tears. 

Oh Good Gracious. 

At some point, all you can do is laugh. Or I guess you can cry. In fact, I probably Should cry. It would put some water in my stupid Sahara eyes!!! 

This could all just be a side effect of the steroids I have come off of. OR it could be a side effect of any one of the 5 Million medications I am on. OR it could be some disease called Sjogren's Syndrome which is totally random plus I don't have time for any more diseases right now, thanks. So no one is exactly sure why my eyes up and decided to stop producing water, but the fact is I have got to get some moisture back in there. Turns out it can be dangerous to let severely dry eyes go without treatment. You can end up with scarred corneas or infections or some other awfulness. I have been dropping OTC (over the counter) drops in there 3-4 times an hour just to function. Otherwise I can barely keep them open for very long. But dropping eyedrops that often is really Really annoying, plus not really practical. I started a steroid eyedrop (which seems to make no sense if steroids caused this, but apparently I am wrong?). Then my doctor wants me to start using Restasis, a prescription eye drop designed to prompt the eyes to start making tears again. The bad news is that it can take a while to really start working. So in the meantime I am the Eyedropper Queen.

It is so hard to process all this new information and make the best decisions about what to do next. Every doctor has a different opinion and they are just opinions. it is my body and ultimately I have to decide what i want to do and how to deal with its many MANY quirks and shortcomings. I don't yet know if there are any downsides to Restasis, but i know that i don't want to take any more medications than I have to because they ALL come with their own host of side effects. So I rest my eyes alot and keep them closed. I put drops in, or that gel substance that feels like someone rubbed vaseline all over your eyeball. totally gross, but it actually feels pretty nice on a poor zero-tears dry eye. :-) 

Oh it's a mess. But what are you gonna do? 

As for me I'm gonna put on some red shoes and do my best to enjoy Christmas with my family, Old Sahara Eyes and all. :-) 

Uninvited guests

Chris and I went to Shepherd Center on Friday. The ROCK STAR Tracy Walker was able to see me and she was equally unhappy that the oral steroids haven't done diddly-squat. She was also pretty unhappy that this is my third round of steroids this year. Soooo, 

Short Term Plan: get a round of IV-steroids going asap. waiting on nurses to schedule me and get on over here and hook me up! 

Long Term Plan: go back to Shepherd on Jan. 5th for an MRI to see what the heck is happening in my crazy brain and then reevaluate whether or not to change my maintenance (magical) injectable drugs. Perhaps the one I am one isn't jiving with my body chemistry as well as it should. Luckily there are still 3 more I can try!  

The MonSter is just being extremely stubborn this go-round. Apparently it is trying to get invited to Christmas dinner or something but that is NOT going to happen because I am licking this thing before the holidays so I can actually enjoy them! I already spent Thanksgiving weekend balled up on the couch, and I ain't losing another holiday, so I will gladly let nurses stick needles in my veins for another few days if it will make the MonSter pack up its bags and move out! 

Don't you just hate uninvited holiday guests?? 

Oh! and one last favor while I am thinking about it. After Round Two of steroids this week my body is going to be pretty immune-compromised. Not Bubble Girl compromised or anything, but more suppressed than normal. So I ask that you remember me cautiously especially if you have been sick. My body won't be able to fight off much in the way of colds and flu, etc. So no hugs and kisses if you have been coughing and sneezing! We can do air kisses from across the room. And I will try and be extra good about washing my hands and keeping the Purell close by! Thanks and will post again soon...

Relapse-Land

This Relapse has settled in and gotten far too comfortable, to the point where I seem to be living in some strange twilight-zone-universe...

In this backwards sci-fi dimension nothing is as it seems. A stunning blonde beauty who "looks so good" is actually struggling just to stand in place while her legs wobble on top of numb feet with occasional vertigo to boot. One minute she feels very little pain, feels peaceful; the next minute she is writhing in pain that appeared out of nowhere that then disappears just as suddenly without explanation. In this strange universe, day and night do not exist. Fatigue sets in out of nowhere at lunchtime causing immense drowsiness. 

Times, days, all blurred together. Did she eat breakfast? Lunch? She can't remember! The brain fog is unbelievably bad. Like swimming through molasses just to get a thought out and form it into a sentence. Her body's electrical system is on the fritz and constantly short circuiting causing strange muscle spasms, tremors, ringing ears, buzzing legs and other bizarreness. At times it feels like her entire body is shaking. Or maybe she is just really cold.She thinks her dad called. Was that today? Yesterday? Did she remember to call him back?? Damn you brain fog!!

Cabin fever sets in, she is dying to get out, and then she is too weak to walk out to the car. Back to the couch. Is there actually anything left on Tivo? One minute she is starving, the next too queasy to eat and no appetite for anything. And her sassy blonde locks are falling out by the handfuls again, courtesy of the massive amounts of steroids she has just consumed. Perhaps she should buy a wig in every color and wear them to suit her mood. Today sultry brunette! Tomorrow fiesty redhead! 

Just spoke with my team at Shepherd Center to get their opinion on why, after all those steroids, I am feeling slightly worse, rather than better. They have advised me to come on in asap to talk it over and possibly send me in the good ole MRI machine. So trying to get an appt either tomorrow or Monday. 

Sigh. I keep telling myself that this Twilight Zone I am living in is a temporary state of being and it will end. 

I have to be patient and be brave. 

And remember to laugh at myself. 

And find my Happy Place when it is a really Bad Day. 

And let friends and family help me do those things. 

This too, shall pass. 

XOXO

Help is a 4 letter word!

It seems this "episode" has really knocked me on my...well...you know. I guess trying to go to my classes and trying to help put on a show is more taxing to my body than I was willing to admit and now I am still paying the price for it 2 weeks later. It is so hard to know what the limits are, but I am learning. 

Having this disease has been an unbelievable lesson in humility. I have had to accept that there are going to be a great many things I cannot do along the way. It becomes a sort of internal struggle with my pride. It is quite surreal at times. I was so weak at points over the past week that I had trouble doing the simplest things, like tying my shoes or picking up my pills out of the pillbox or giving myself my shot. And I have to fight the urge to make excuses for myself...to somehow justify in my own mind why I need help with these things. 

But it doesn't matter Why. 

What matters is that I  did need help. 

Chris is so utterly amazing with me when these things happen. I am so stubborn and so independent that I will sit and struggle with shoelaces when my hands are obviously not working at that particular moment and I curse the shoes and curse my hands and there stands my husband nearby, watching and waiting. And I look up at him and curse my hands and shoes again. And he waits. 

And then if I am really being stubborn he will calmly say, 

"Caroline, is there something you would like to ask?" 

And I breathe. And I tell that bothersome thing known as Pride to be quiet and I say, 

"Honey, can you please help me tie this shoelace?" 

and 5 seconds later we are good to go. 

Obviously this does not happen every day. The past week has been exceptionally bad and I have needed more help with simple things than usual. But even if I am having a Great day/week/month the lesson is one that applies, regardless of whether a person is disabled or not:

People need help sometimes. And to get help, you have to ask for it. 

Sure, sometimes you get really lucky and someone anticipates and offers help or that one special friend reads your mind and does the thing she knows you need most. But for the most part you gotta Ask for what you want or need. 

That is so easy to say, and SO much harder to actually do. It takes a lot of pride-swallowing, humility and acceptance of your faults and shortcomings, be they physical, emotional or otherwise. But when you are brave enough to ask for help something amazing happens. People say yes, and they are in fact, honored that you asked. And then something even stranger happens. These little things add up and they bring you closer to people and you find yourself having deeper more meaningful relationships with those you love. And while having a day when you can't drive or can't tie your own shoelaces really sucks...knowing that there are people out there that love you enough to do those things for you...well, that's really pretty awesome. :-) 

XOXO

Thankful

On this thanksgiving I wanted to share just a few of the many things that I am truly thankful for: 

I am thankful for my truly amazing husband.

I am thankful for my all six of my parents, my one awesome brother, my grandparents, my stepsisters, stepbrothers, brothers-and-sisters-in-law, aunts, uncles, cousins, nieces and nephews who truly light up my life every day.

I am thankful for our beautiful home that we live in. 

I am thankful that we always have enough food on our table. 

I am thankful we have clothes on our backs. 

I am thankful that we both have cars to drive that work and are 100% paid for. 

I am thankful we have steady income right now. 

I am thankful to be able to be back in college, at age 29, with the hopes of one day finally becoming a college graduate!  

I am thankful for red shoes, which even on my worst days, make me feel beautiful and powerful. 

I am thankful that my hands still work most of the time so that I can play Oscar, my piano. 

I am thankful for the days when I see well enough to drive. 

I am thankful for the team of doctors and nurses at Shepherd Spinal Center and other places, including my dad, who all help to take such good care of me year-round. 

I am thankful to have so many dear friends who cheer me on, love me and make me laugh always. 

So I put it to, fabulous readers: What are you thankful for this year? Feel free to share one favorite thing or more than one. 

Leave a comment and tell me what you're grateful for! 

Finally, I am so thankful for the people who visit my blog to check in on me. 

People email me or come up to me and tell me that I inspire them, but hearing that my small journey on this earth can do that for even one person means more than you will ever know. It inspires me to know that people out there read my writing and think it isn't half bad :-) 

So thank you...from the bottom of my heart. 

My love always, 

Caroline

XOXO

Blip...blip...blip

I am sad to report that after feeling worse and worse over the past 10 days I spent the afternoon at Shepherd Spinal Center (thanks for taking me Mom!) and my doctors think I am having another "exacerbation" or "episode", but I think I may prefer "blip". A blip implies a short, brief anomaly on the radar and while it is my third blip this year I hope it will be short-lived and I will be feeling better sooner rather than later. I will not bore you with details, but it is mostly just worsening of existing symptoms and a few mild new ones (feet totally numb all the time, and weakness in my hands). I am trying to stay positive, optimistic and rest lots and let the high-dose steroids run their course. 

With only 18 months of this thing under my belt, I still have a lot to learn about my disease. While I certainly hate feeling this bad right now (and for the third time this year!!) in comparison to other MSers, my "episodes" have been fairly mild, i.e. I haven't gone blind or lost total use of any of my limbs, etc. etc. I wouldn't wish an MS relapse on my worse enemy, but still in the grand scheme I am grateful that I don't have it worse. 

Anyway, just wanted to update everyone. Keep us in your thoughts and prayers for a quick recovery. I want to be able to enjoy all the upcoming festivities. Chris and I are going to have our first ever Christmas tree in our new house! Plus I am still in college and have exams to pass! Lots to do. Gotta feel better Sooner rather than later! 

Look for my thanksgiving post to follow this one....and I expect lots of audience participation :-) XOXO

PS- for some reason this round of steroids has me looking like the Stay-Puffed Marshmallow Man. I am so swollen that the skin on my face is peeling, I can't get my wedding rings on and my shoes have all shrunken in my closet!! So if you have the pleasure of seeing me in Marshmallow mode feel free to bring along the graham crackers and hershey bars and we'll just make S'mores together :-) hehe

Pumpkins

For most of us with chronic illnesses, every day is a balancing act.

With MS, you have to measure your "spoons" ahead of time and then sometimes re-evaluate your spoon supply throughout the day. (If you missed the Spoon Theory, you can read it here: http://wearingredshoes.blogspot.com/2008/03/spoon-theory.html )

For instance, I wanted to go to Target the other day. At the time I felt I had enough energy/eyesight/balance left to drive the 7 miles to Target, shop and drive home. About halfway through shopping I realized I was about to turn into a pumpkin (my latest catch phrase which reminds me of Cinderella, another lover of fabulous shoes!) So I am at Target and all of a sudden I find myself holding onto the shopping cart for dear life (in other words, my balance was beginning to fail me) and my legs felt as though they were pumped full of lead.

This type of scenario happens to me alot and when it does I have two choices: A) ignore my body, push on and finish what I am doing or B) go straight to the nearest register and get home to rest. Frankly, there are problems with both choices.

First of all, I want to be able to finish whatever I am doing: shopping for groceries, eating lunch/dinner with friends, etc. It is extremely irritating when the rude MonSter interrupts what I am trying to do!

On the other hand, if I keep pushing my body when it starts to give me these warning signs then inevitably I will have to pay the price in some way later on. It might be later that day (my pain level spikes or my vision gets worse to the point I have no hopes of driving or seeing anything worth a darn) or it might be tomorrow that I pay the price for what I did today.

The other thing about chronic diseases is that you have to take A Lot of medicine just to stay afloat. Some days I feel like I am 29 going on 89, certainly with the amount of my daily medicines. People with MS and other types of nerve damage don't have a lot of choices. They just don't make that many drugs to treat this kind of complicated disease and unfortunately none of these drugs come in XR versions. XR stands for Extended Release, meaning take one pill in the morning and then it releases little bursts into your body throughout the day. So sadly I have had to become a Pill Popper. I take pills 5-6 times a day in order to manage nerve pain and spasticity.

Last week I helped my stepdad do hair and makeup for his show "The Sound of Music". I had several kids assisting me in The Cave, as we affectionately call the makeup room. I would arrive around 4pm and help put on makeup and braid hair and put in bobby pins and during that time I would inevitably have to take a dose of pills. I was so afraid I would forget to take them, with the wonderful distraction of 45 teenagers, so I set my phone alarm to go off to remind me. By the end of the show's run, I had kids checking on me, "Caroline, you weren't in the Cave and your alarm went off. Be sure to take your pills," or passing them over to me while I braided hair.

I had worried so much about having to take all these pills in front of them, but it sparked all sorts of wonderful conversations, and the students opened up in new ways and shared things with me about their own lives. No one has it easy- everyone has some burden to bear, whether its a serious health problem or some other type of challenge to overcome. Everyone has Something. 

I think what makes it so hard sometimes is that feeling of being alone in the world. I often feel alone in my disease. I am the only one trapped in this body, with these symptoms. It is easy to feel alone. But just the simple act of someone else reminding me to take my medications, or passing them across the room to me - those tiny gestures - they made me feel just a little less alone. To quote the cheesy "High School Musical", "We're all in this together..." and that means you have people on your side always. No matter what happens to you, No matter how many pills you have to take, Even if you run completely out of spoons and turn into a pumpkin right there in the middle of the Target!! No matter what happens there are Always people cheering you on, in large ways and in tiny ones, too. And sometimes it is those tiny gestures of love and friendship that keep us all going. 

Friends

This post is late, as are most things lately (read previous post!!) but nevertheless it was very important for me to share!!!

Let us go back in time to September 13th, to Great Neck, Long Island for the wedding of Chris' college roommate, Dominic and his lovely bride, Alexis.

We have both adored Dom since the UPenn days, but we fell in love with Alexis within 10 minutes of meeting her. Chris and I both had the same reaction: "Oh man...I hope Dom knows to hold on to this one!!" :-) We have enjoyed several destination wedding weekends with them and the other 415ers, and while they currently live in NYC we have talked them into coming down to visit a couple of times. Along with our dear friend Kempton they were the icing on the cake of Chris' surprise 30th birthday party. I will never forget the look on Chris' face as he turned around to see the 3 New Yorkers standing there to celebrate with him.

People that fly in for less than 48 hours just to celebrate your birthday with you are pretty serious friends.

But I digress...back to the wedding! It was a lovely weekend catching up with old friends, making new ones, getting to see the "Perfect Family" (I LOVE the Ainscough's) and toasting the soon-to-be Mr. & Mrs. The ceremony and reception were just stunning. Venue was amazing, every detail taken care of, and the Bride looked like a movie star. Chris stood proudly as a groomsman and before we knew it we were all enjoying the reception together.

When it was time for dinner we all headed to the ballroom. The table settings, flowers were just gorgeous. As I sat down I noticed my fancy china, silverware, a rectangular shaped card that I assumed was the menu and then a smaller round card above that. I wasn't seeing too well by that point in the evening (and my magical glasses clashed with my dress so I wasn't wearing them) but I finally closed one eye and tried to read the interesting round card to see what it said...and I was Speechless.

Printed out at every single guests' place setting was a beautiful card that read, "Dear Family and Friends, In honor of our guests, we have made a donation to the National Multiple Sclerosis Society. We thank you for being part of our lives and joining us on our wedding day. Love, Alexis and Dominic". And all of a sudden I am blinking back tears and doing that silly waving my hands at my face thing that women do when they are trying not cry! hahaha

Instead of giving their guests favors, our dear friends gave a donation to my favorite charity, in our hope for a cure. I don't think friends get much better than that.

I always feel so guilty about not spending enough time with the people I love, for not being able to do more, to fly up to NY or Cherry Hill to visit the people I hold near and dear, to spend more time with my family and friends here in Atlanta...I always feel as if I am not a good enough friend because this disease and just Life in general robs me of so much energy and time.

And then I see how much my friends love, support and appreciate me with an amazing gift like the Ainscough's gave me that day and I realize that the Wizard, as he spoke to the Tin Man, was right all along:

"And remember my sentimental friend...that a heart is not judged by how much you love, but by how much you are loved by others."

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.

Just Do It

“Do the thing you don’t think you can do”, she says. “Do the thing you are most afraid of and you will then realize you are capable of more than you ever thought possible.”

I am slightly paraphrasing based on memory, but this was essentially what Zoe Koplowitz said to our group of MSers at a recent NMSS Wellness Expo. I sat there stunned at her words and found myself laughing and crying through her inspirational speech. I think her words ring true for anyone – MSer or not. What is the thing you are most afraid of? Are you afraid of doing it for fear of failure? For fear of the process of doing it? Ponder on it a minute and I will share my own story, because as soon as those words flew out of Zoe’s mouth I knew what I had to do.

I had to finish school.

There I said it. I have never made it a secret that I didn’t graduate from college. I don’t always volunteer the information either. I completed 2 full years plus one more semester at the University of Cincinnati, College-Conservatory of Music and then I withdrew, moved back to Atlanta, began working to support myself and the rest is history. I don’t think not having my undergraduate degree has hurt me all that much in the 10 years since I left CCM; however, it has always felt like this cloud looming over me, pointing and jeering at me behind my back. I always meant to go back. I never saw myself as a person who wouldn’t finish college, it just sort of turned out that way. I was working, making good money, having a career. Then I was getting married and starting my own business on the side teaching kids to sing and dance and life was good. Who needed a college degree? I didn’t have time to go back. I couldn’t justify spending that kind of money anyway. Who would ever really care if I graduated or not?

Well it turns out, I cared. I knew that I hadn’t finished and I cared. It was the thing I had been most afraid of doing. I might fail (again) and have to drop out. Or maybe I wouldn’t be a very good student. I would be too old – the old married lady hanging out with the 18 year olds. And now I could even blame MS for making it too hard to go back! I could have come up with two dozen really good reasons to not ever finish…
Damn that Zoe.

I had to make it as easy as possible on myself. Location was an issue. I don’t always see well, so it had to be easy to get to if I was having a bad day. Well, it turns out there is a school approximately 4 miles from my house called Oglethorpe University. I applied online on a whim, paying my $35 application fee. I sent my transcript and my recommendation form (thanks George!) and I wrote an essay that recounted a particular lesson I had learned from MS (might have even been a cut and paste from a previous blog entry!) All of a sudden I am getting phone calls from the Admission Office and they are offering me a place in the junior class AND offering me a University Scholarship!

I started back to school on Monday, August 25th. The first week was utterly terrifying, finding my way around, battling the heat and fatigue and my rising pain issues of late. It didn’t help matters that I spent last weekend hooked up to immune suppressing steroids to get this quasi-relapse under control. How many college students have to deal with that their first week back? (I am such a Drama Queen!!)

But with the second week now behind me I am finding that I actually might be kind of enjoying it! I am slowly adapting to my new persona as College Student. I have a new backpack and notebooks and new highlighters and pens and am making new friends. Most of the kids in my class find it fascinating that A) I am married, B) I own my own home and C) am rapidly approaching age 30. I haven’t disclosed my MS much yet. I did meet with Oglethorpe’s Learning Resource Coordinator to discuss the issues of my disability and he was amazing. He has ordered my books electronically where I can download them and my computer can read them to me. He told me that if I ever do have to miss class to undergo treatment related to my MS, they will help me work through it so I wouldn’t have to withdraw or fail the class or anything.

I got my very first paper back yesterday and it was a A! Chris put it on the fridge :-) But I am really trying not to be an overachiever about such things. I don't expect to get A's on everything. I am perfectly okay with B's, even C's. This isn't about the final grades. It is about the process. And there is no timeline. I have no idea how long it will take me or if I will graduate. I am taking it one day at a time. But I suppose I am giving it the old college try.
Wish me luck!

Do the thing you don't think you can do. 

What have you got to lose? 

If you fail, you fail! So what!  

Failing is a great learning process, too. :-)

Whatever it is you are afraid of...Just Do It. 

XOXO

C

*Blip*

A quick update to let everyone know I had a minor blip on the MS radar this weekend...

Had an appt at Shepherd Spinal Center on Thursday to discuss my recent increase in nerve pain and spasticity. My team of doctors/nurses felt this change was most likely due to minor inflammation in my brain. This was possibly brought about by my recent sinus infection (infection is a very common trigger of MS relapse/exacerbation/episodes). They wouldn't call it a "relapse" so I am going with "quasi-relapse". :-)

Long story short I started Solu-Medrol (IV steroid infusion) on Friday, completed Day Two yesterday and completed final dose this afternoon. Whew! So happy to have it over with. I am feeling a little crappy today, no doubt from the massive amounts of meds being pumped into my veins for 3 days. But hopefully this will help get my pain levels back to normal and manageable. 

We are so blessed with so many people who look out for us, send us happy thoughts...on the Good Days and the Bad Days and all the days in between. It means more than you could ever know. 

I have LOTS of new blog posts in the works, but am understandably behind after this weekend. But look for more from me very soon. 

My love always, 

XOXO

C

MS September Safari

Our websites are finally up and running!
http://main.nationalmssociety.org/goto/carolinesafari
OR
http://main.nationalmssociety.org/goto/redshoesafari

The email feature on the site was acting up, so if you just got a weird email from me, ignore it. I am sending the corrected version ASAP. :-)

Would love to have you join us for a fun day at ZooAtlanta!

This will be a very family-friendly event, so little ones are welcome...as long as they participate and do their best to fundraise with us!

You would be surprised how easy it is to raise $100 for a cause you believe in. $25 from 4 of your neighbors or $10 from each of the people on the soccer team. Small amounts add up quickly!

Hope lots of Red Shoes will join us on our Hunt for the Cure!

Don't Panic

I read a magazine article recently in which the author referred to herself as a "disaster magnet". While this probably sounds a bit over dramatic, my heart did go out to the writer. Everything from death of a close family member to diagnosis of a serious, potentially fatal illness, to the loss of her career and income - all of this had happened to her, in a rather short amount of time. She began thinking and saying, "OK then. What's next?" as she anticipated the next horrible thing bound to come her way. She started having anxiety attacks and found herself in a constant state of worry.

I immediately felt a kinship with this woman, as I recounted my own series of medical disasters:
April 2006: I find an odd, small, hard lump in my left breast. I see one doctor then a radiologist as it is deemed "suspicious". A biopsy concludes it is most likely a benign fibroadenoma tumor, and it may or may not continue to grow.

June 2006: I am jolted awake at 6:30AM with the worst charlie horse of my life (a possible precursor to MS spasticity?? dunno...) I am overcome with pain...and then with nausea. I run to the bathroom to vomit. I never make it to the bathroom. I faint, falling face forward onto, well, my face. I knock out my front tooth and also bite through my lower lip on impact. An ER visit, 11 stitches, a root canal and a crown later, I am doing much better, and my dentist and plastic surgeon did such great work you can hardly tell anything ever happened.

November 2006: Six month recheck of lump determines it is growing and I undergo my first real surgery to remove my stubborn growing lump. The surgeon is amazing and she does a great job.

April 2007: I wake up one morning with blurred vision. I figure I must be really tired or didn't sleep well the night before or something. 24 hours later it is getting worse and is now true double vision. I call my dad who gets me in to see an ophthalmologist, then a neurologist, then I have an MRI, then neurological function testing and finally a spinal tap. Before we know I am diagnosed with MS. Neuropathy (aka horrible icky nerve pain) starts shortly after the vision problems. I begin my treatment at Shepherd Spinal Center which includes drugs to help manage my pain and spasticity plus the Wonder Drug to help slow the progression of my disease. We wait for this first exacerbation/episode/relapse to end, hoping that with it, my pain-free-single-vision body will return.

March 2008: Almost a year later, the pain and double vision are still hanging around. But I am adjusting as well as anyone can. Then comes...my first official relapse (they actually don't call your first diagnosis relapse a relapse. it is very confusing). With it comes vertigo and mind-numbing pain, mostly in my arms. A round of solu-medrol later I am doing much better.

Frankly, I think that is a lot of medical drama for a 2 year span for anyone, even a Drama Queen! So does all this make me a disaster magnet, too? The article I read went on to say how every little thing then became an opportunity for further crisis. Evey car trip a potential for an accident, every pill taken could end with allergic reaction, every phone call was surely someone calling with more bad news. I also have days where I am certain something horrible will happen. I started to become totally neurotic about taking any new medication, certain that I would anaphylax, end up in the hospital. There was a chance I would die.
On my really bad days when my eyesight is crapola and neuropathy is kicking my butt, I sometimes don't think there will ever be light at the end of the tunnel.

I have now found that the trick is asking yourself, "In this situation, what's the worst thing that could happen? Now what if that thing DID happen?" I know it sounds a little depressing, but stay with me a minute here. Let's say the worst thing would be losing your job, for example. Yes that would suck. In this sucky economy, it would really really suck. (Sorry Mom, I know you hate that word, but I just had to use it here!!) But would losing your job mean you are any less of a person? Would it mean that you aren't wonderful, smart, loving, beautiful, etc, etc? Of course not! You would still be You. And as Fred & Ginger said, "You pick yourself up, dust yourself off, start all over again," and you would then go out and find an even better job. Or you decide to rethink your career entirely! And this mentality can be applied to whatever it is you are most afraid of- even if it DID happen, you would still be You. You would find ways (possibly after some tears, some yelling, lots of support from your loved ones, perhaps even therapy!!) to be happy and make a new path for yourself. Because let's face it, the alternative of feeling sorry for yourself, constantly feeling anxious, dreading each and every day...that is no way to live.

I will share a dirty little secret. Ok, it's not really "dirty" but secret nonetheless.
I had started to become really-super-neurotic about taking my medication, especially new medication. Sometimes I would get panicked before my nightly meds, or right before I had to do my injection I would start hyperventilating, feel lightheaded, the works! (Dad, I know how shocked you are that I had to get out the paper bag to breathe in! haha) Anyhow, in my intelligent brain I knew how ridiculous this was. The chances of having an adverse reaction to a drug you have been safely taking for a year is slim. It happens, but rarely. There was no cause for immediate concern, and yet I couldn't help myself! Something HAD to be done here. This had to stop.

So I said to myself, "What's the worst that could happen?"
"Well," I told myself, "You could anaphylax and die right here on the living room floor, as your poor husband stares down at your lifeless body and your bipolar cat gnaws at your lifeless hair, which is beyond weird, because though my hair smells good, it can't taste that good and yet cats seem to love..." and suddenly the whole thing just became so ridiculous I couldn't help but laugh.

And that is the key: the ability to laugh at yourself can make all the difference in the world. So now when I try a new med or when I start to feel the tightness in my chest before my injection, I have a new little mantra (which WILL remain secret!) and it always makes me laugh at myself and reminds me to never Never take myself, or anything, or anyone TOO seriously. The world isn't out to get me, though it has sometimes seemed that way :-) It is just trying, though often in very strange ways, to make me a better person.

XOXO

Save the Date!

I am so behind on so many things I don't even know where to start. Fortunately I know where to end, hence the blog title. Keep reading!

This summer has been so difficult- more than ever before I have felt as if I am constantly running to keep up with the rest of the world, and yet no matter how hard I "run" I always end up in last place. Or maybe second to last place :-) The heat has affected me so much more this year. Maybe I was still too Dx-Stunned (Diagnosis-Stunned) last summer and I didn't notice it so much. Or maybe this summer really IS hotter, or maybe I am just getting older and it has nothing to do with MS. Or maybe my MS is getting worse?? Enough already. You could get dizzy thinking about the "Why". It is what it is. Don't know why. I will allow myself a 15 minute pity party. Then I will move on. In Summary, this summer has been kicking my butt.

I turned 29 a few weeks ago. It was mostly a blur. I got hit with a bad cold that then became a bad sinus infection. I felt so horrible the week/week after my birthday that I never even got around to putting all my Wonderful cards up on my cabinets, which is one of my favorite things about birthdays. they are all still sitting there, in my lovely Kosta Boda bowl (a wedding present from my mommy) so they look nice, but still. You know things are rough when the cards don't make it up to display! Anyway, I treated the infection with antibiotics. it got better, then it got worse again, switched antibiotics. Hoping for the best. I have gone through so much Mucinex, Afrin, Dayquil, Nyquil and Kleenex that I should have bought stock in them all! I have to remind myself that the whole point of Betaseron (aka Wonder Drug) is to sorta suppress my immune system, so to speak. And that is what you do for an incurable autoimmune disease. So why then, am I so surprised when A) I get sick, B) it takes longer for me to get over being sick. I am On Immune Suppressants. DUH! At any rate, being sick before, during and after your birthday + the hell that is Atlanta in July just didn't leave me with the best birthday ever. But it is only a birthday. I can try again next year :-)

Chris and I are fast approaching a busy wedding season with 3 weddings in a 5-week span. It is exciting and I have to remember to pace myself accordingly. Especially while it is still so darn hot! Chris bought me this amazing thing called a cooling vest: http://arcticheatusa.com/
It is this vest filled with crystal things that you activate and they turn into gel ice packs. You keep it in your freezer then take it out and put it on. It is all about keeping your core temperature down. When MSer's core temps get too high, it is like an electrical system overheating and shutting down, or causing crazy malfunctions. I look like a member of a SWAT team wearing it, but it really does work. And don't worry my brides out there - I will NOT wear my cooling vest to your wedding! :-) Though my next project may be to create a more fashionable chic cooling product.

So now onto the good stuff:
Save the Date!
2008 MS September Safari
Saturday, September 27th
9:00AM
Zoo Atlanta

I am very excited to announce that I am chairing a new NMSS event! We wanted to do something more family friendly that kids (and kids of all ages) could enjoy. It is a first time event, so we are still working out all the details, but mark your calendars now! 

I would love to have lots of Red Shoes there to support MS and to enjoy Zoo Atlanta. OR if you have a group of people (church groups, daycare groups, sports teams, etc, etc) that you think would like to be involved and start their own team, that's great, too. The more the merrier. 

And of course this IS a fundraising Safari...we are exploring for the cure! Details to follow, but what a great way to get kids involved and learning about charities, philanthropy...ok, maybe a 6 year old isn't ready for the vocab word, "philanthropy", but you get the idea. And I gotta tell you - No One can raise money like kids can. Seriously. Did you SEE Louis Nanda's WalkMS webpage? He raised some serious money! How can you say no to an adorable 2 year old asking you to support a good cause for his "Aunt" Caroline??

So info coming soon to you all via email (since I know only 8 or 9 of you are out there actually reading this...Hi Adele!) Hope you will join us. It will be a fun event and hopefully by 9/27 cool enough for me to enjoy the Zoo as well. if not, no worries - I will be wearing my sporty new cooling vest, and my red shoes. of course. :-)

XOXO

Overachievers

Perfectionists.  Type A Personalities. Overachievers.
I have always been a member of all three clubs. 

I have always wanted to be the best at everything I did. Mediocrity was never an option for me. I have trouble sitting still for too long. There are too many things I want to be doing.

As we age, we can no longer do all the things we used to. With age comes the loss of energy, among other things. What you could do in any given day at 20 seems nearly impossible at age 40. I have just had to learn these lessons a bit sooner than most. What i could do at 27 now seems ridiculous at 29, but a lot happened in those 2 short years :-)

I have always struggled with defining myself by what i "do", by my accomplishments and by my productivity. As we age (or even face a neurological disease!) we must come to terms with the fact we can no longer accomplish as much as we once used to. But that doesn't make us less as people. Our lives can be rich with so much without being what we used to think of as "productive".

Easy to say. Much harder to come to terms with. 
If I cannot define myself by what I "do" or "accomplish" then who am I? There are so many old labels that I can no longer live up to. For example, I am known for being fairly entertaining. I tell funny stories, I am occasionally witty. I think people enjoy my company, for the most part. So what about the days when I am really struggling to walk straight, can't see worth a darn and am in pain? What if I don't feel well enough to be funny and entertaining? can I still show up to the party as I am, even if I am not able to keep up my usual witty repartee? Or will everyone be disappointed that I'm not living up to my "usual self?"

Aren't we all constantly changing? relationships change, friends change, people have children and lose loved ones and get sick and get new jobs and all sorts of things. So I guess it is inevitable that I would change, too. Not in ways I ever anticipated, but that's Life, right?

Perhaps I have to come to terms with no longer being able to BE an Overachiever. I am going to have accept the words "good enough" and let words like "perfect" be something that lives only in myth and legend.

In fact, I have been sitting here trying to end this blog post properly for the past 20 minutes.
I am now walking away.
It is good enough.
It is not perfect, and sure I could have probably come up with a better ending, but I am really tired and fighting what my dad thinks is probably a sinus infection and I should be curled up on the couch with my husband and my box of kleenex.

It is good enough. And so am I. :-)
XOXO

Pain...the body's way of letting you know something is wrong.
Your throat hurts, you find out you have strep throat and need an antibiotic.
If you break your arm, it needs a cast, and without pain you might not have known it was broken. I could go on, but you get the point. Pain is actually important. It is your body's way of communicating with you.

Neuropathic pain is the same- it is letting me know there is something wrong.
DUH. I have lesions. In My Brain.
But what else is the pain trying to tell me, perhaps?

It is a common joke among MSers that there should be some sort of betting and/or drinking game when watching the tv show "House". For those of you that don't know, it is a show set in a University hospital, where the lead character, Dr. Greg House, MD, is the country's leading diagnostician. He takes the medical cases that no one else can solve. The weird, crazy stuff. Like MS! So anyhow my husband and I often make bets on how long into the episode someone will throw out "multiple sclerosis" as the patient of the week's diagnosis. 80% of the episodes talk about MS, at least briefly.

Anyway, I was watching an episode a few months back where a young patient on the show was actually diagnosed with MS. The patient asked what MS was. And the handsome Dr. Chase tried to sum it up in one sentence. It went something like this:
"Well, MS is a painful disease. It can affect your bladder/bowel functions. It can also affect mobility. It is incurable, but there are lots of promising treatments to prolong your quality of life..." blah blah blah. Take it all with a grain of salt - it IS a tv drama! They have to make everything sound dramatic; however, all of those things Are true about MS. And it has stayed in my mind that the writers (for whatever reason) chose "pain" as the leading symptom when sharing this character's fate with him.

MS is a painful disease. I have been sorely reminded of that fact this week.
Maybe its the summer and the heat. I also seem to be fighting some sort of head cold. And since heat and infection are both major stressors to my disease it makes sense that i feel pretty awful. I am having horrible neuropathic pain/neuralgia, which I wouldn't wish on my worst enemy. So while this particular pain isn't telling me anything new, it must still be trying to tell me something. To Slow down? To get more rest? To keep my core temperature down and avoid the Atlanta heat? telling me my cold needs some TLC and vitamin C and the ultra soft kleenex?

I need to be a better listener. What is it telling me?

"Go drink more water. Go to bed super early. Find something good to eat for dinner. Stop judging yourself for being angry and sad about being in so much pain. Its okay to be angry and sad. Its also okay to have chocolate on those days."

MS-Free Zones

Last week I helped my sister Helene, who asked me to come in and do hair & makeup for 10 actors & actresses appearing in "Charley's Aunt". The students were awesome and so patient with me as I played around with different wigs and moustaches and makeup techniques. I actually had to pull out my old college textbook to remember how to properly apply a bald cap (Yes, I actually had an entire course in college devoted to stage makeup techniques!) 

I re-learned old makeup techniques and invented some new ones. But what I really learned last week came as a complete surprise... 

For three hours a day I was just "Caroline, the lady helping with hair & makeup". The kids didn't know that my feet have been almost entirely numb for weeks. They didn't think anything of it when I squinted one eye at them, or looked at them sideways to try and see them better. They had no clue that I was anything other than clumsy when I dropped things every five minutes. They merely thought I was flaky when I asked them the same questions, "Did I tie the gold ribbon or the pink ribbon in your hair yesterday?" when in reality my short term memory is not what it used to be.

For three hours a day for five whole days I was just someone who helped put on a show. As I braided hair and powdered faces I could almost forget the constant pain, the numbness, the poor vision. I could almost, Almost forget that I had MS. For three whole hours!

It reminds me of the line from "The Wizard of Oz", in the very beginning, when Auntie Em tells Dorothy to go find "a place where there isn't any trouble".

"A place where there isn't any trouble. Do you suppose there is such a place, Toto? There must be. It's not a place you can get to by a boat or a train. It's far, far away. Behind the moon, beyond the rain..." And Dorothy begins to sing my favorite song.

A place where there isn't any trouble...

An MS-Free Zone...A place where MS is not allowed to visit.

In those few precious hours I learned that moments in time exist where I can just be Caroline. I can make-believe that i am not sick, not in pain, not impaired. I know it is simply a moment and it will not last; however, having those moments gives me strength. And hope. It makes the moments of pain and frustration a little easier. 

Who knows where the next MS-Free Zone will be? I am excited at the thought of it, whether it is three hours or three minutes. I aim to find more of them. And then somehow, slowly, I may be able to find my way back to myself. Not my former self, but a new version. Someone I am still getting to know, but every day liking a little bit more. :-)

Attitude is Everything

People ask me all the time, "How do stay so positive having this painful, disabling, potentially devastating disease?"
I usually answer with some variation of, "Well. What choice do I have?"
But what goes unsaid is that there IS a choice.
There is Always a choice. It may not be the choices you want. I certainly would not have chosen MS for my life, but since it chose me I can now choose how I will react to it.

This story was sent to me by my Betaseron nurse Judy:

John is the kind of guy you love to hate. He is always in a good mood and always has something positive to say. When someone would ask him how he was doing, he would reply, 'If I were any better, I would be twins!'

He was a natural motivator. If an employee was having a bad day, John was there telling the employee how to look on the positive side of the situation. Seeing this style really made me curious, so one day I went up and asked him, 'I don't get it! You can't be a positive person all of the time How do you do it?'

He replied, 'Each morning I wake up and say to myself, you have two choices today. You can choose to be in a good mood or ... you can choose to be in a bad mood I choose to be in a good mood. Each time something bad happens, I can choose to be a victim or...I can choose to learn from it. I choose to learn from it. Every time someone comes to me complaining, I can choose to accept their complaining or... I can point out the positive side of life. I choose the positive side of life.'

'Yeah, right, it's not that easy,' I protested.

'Yes, it is,' he said. 'Life is all about choices. When you cut away all the junk, every situation is a choice. You choose how you react to situations. You choose how people affect your mood. You choose to be in a good mood or bad mood. The bottom line: It's your choice how you live your life.'

I reflected on what he said. Soon hereafter, I left the Tower Industry to start my own business. We lost touch, but I often thought about him when I made a choice about life instead of reacting to it. Several years later, I heard that he was involved in a serious accident, falling some 60 feet from a communications tower. After 18 hours of surgery and weeks of intensive care, he was released from the hospital with rods placed in his back. I saw him about six months after the accident. When I asked him how he was, he replied, 'If I were any better, I'd be twins. Wanna see my scars?'

I declined to see his wounds, but I did ask him what had gone through his mind as the accident took place. 'The first thing that went through my mind was the well-being of my soon-to-be born daughter,' he replied. 'Then, as I lay on the ground, I remembered that I had two choices: I could choose to live or...I could choose to die. I chose to live.'

'Weren't you scared? Did you lose consciousness?' I asked

He continued, '..the paramedics were great. They kept telling me I was going to be fine. But when they wheeled me into the ER and I saw the expressions on the faces of the doctors and nurses, I got really scared. In their eyes, I read 'he's a dead man'. I knew I needed to take action.'

'What did you do?' I asked.

'Well, there was a big burly nurse shouting questions at me,' said John. 'She asked if I was allergic to anything 'Yes, I replied.' The doctors and nurses stopped working as they waited for my reply. I took a deep breath and yelled, 'Gravity''

Over their laughter, I told them, 'I am choosing to live. Operate on me as if I am alive, not dead.'

He lived, thanks to the skill of his doctors, but also because of his amazing attitude... I learned from him that every day we have the choice to live fully.

Attitude, after all, is everything.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.' Matthew 6:34

Ways to give

I have been so bad about blogging this month!
The heat is really hard on us MSers. I won't bore you with the ugly details but I have been a little under the weather this week. Today was better, it was a little cooler. But man am I dreading August right about now....Ugh.

So while summer brings heat, humidity, pool parties and other things it also brings....My Birthday. Yes, I am using my blog to remind everyone of my birthday (July 19th...did you write it down?) but really I bring it up because I would like to address a more serious issue:

I do not need presents.
Cards, yes. I need cards.
I am truly a kid at Christmas every time I go to the mailbox in the month of July. I admit it. Call me crazy. I am a card addict. I have a problem. There should be a support group! So yes, please feel free to send cards. :-D
But back to presents- I don't need anything. Really.

However, if you would like to buy Yourself or Someone Else you know a fabulous present in honor of my birthday...well, now that would be a swell idea! And do I have some ideas for such presents? Well of course I do!

For the dog lovers in your life we have a Dog Toy for MS!
http://www.carealotpets.com/item-detail/?ItemID=000000000009925

For the women in your life (or men, I don't judge!) we have Earrings for MS!

http://www.christopherandbanks.com/product/index.jsp?productId=3036655&cp=2958674.2958736&sr=1

Hey, its summer- the sun is bright and sometimes you need to protect the eyes and/or the head when you're out and about...Hats for MS!

http://www.msstoreipp.org/hats-caps-c-1_8_31.html

(this site also has shirts, mugs and more - links are on the left-hand side)

For anyone and everyone: Magnets, Mugs, Mousepads and more for MS!
http://www.zazzle.com/ohgreeting/home

(this zazzle site is great - a lot of the products are designed by the daughter of an MSer, including the items with the ballerina with...wait for it...red shoes on!!! I have already purchased red shoe stamps. You will be seeing them from me soon!)

So this year treat yourself to one of the fabulous products...send one to a friend...send one to your great aunt myrtle...then just send me a nice Hallmark and tell me what you bought and who you gave it to.

I can think of no better birthday present than a bunch of cards plastered all over my kitchen telling me about the MS gifts given to people everywhere in honor of my birthday!!

I am woman

I like women. I like them as much as or more than I like almost anybody.

But the women I like best aren't always strong, and they're certainly not invincible. They're creative, they're idiosyncratic and they're around if you need them. They complain, they console, and the can shop their way through virtually any crisis.

They know how to raise hell and they know how to raise children. They can spot a scam, a lousy doctor and a crummy boyfriend in under 10 seconds. They've perfected the withering stare that makes a nasty salesperson, flight attendant or coworker fold like an origami swan.

My favorite women may feel bad about their necks but they feel pretty damn good about their legs. They've never met a carbohydrate they didn't want to have a close personal relationship with. They brake for sex, sleep and solitude, cashmere and caffeine.

They've got nerves of steel, the courage of their convictions and excellent footwear. They're sugar and spice and everything I aspire to. They remain cautiously optimistic.

We are strong, and when one of us isn't feeling all that invincible, the other will take the wheel.
We are women.
- Lisa Kogan

Summer. 

A time of family vacations, swimming and laying by the pool, longer days and hotter nights, mosquitos, fireflies...memories of running through sprinklers, eating popsicles and spitting watermelon seeds...trying not to get too sunburned at the beach and as bathing suit season approaches, thousands of women regret not exercising more during those cold winter months.

I was born in July, so summer also means I have a birthday to celebrate. Summer has a lot of positives; however for MSer's, summer comes with a few negatives as well.

I made peace with my cellulite years ago. I can't really do anything about it. Also I am just under 6 feet tall. I am not a small person, nor am I a supermodel, so being a size 0 or 2 or even 8 is just not in my cards. Unless I want to starve myself, which I don't. I like having curves and frankly this past year they have come quite in handy as I have to inject myself sub-cutaneously every other day. For those not familiar with "sub-q" injections, you have to pinch about 1-2 inches of flesh away from your body to avoid hitting muscle. This is a heck of a lot easier when you have more flesh! In fact super-skinny people have to do subq injections differently than us curvy folks to avoid hitting something important, like muscles or organs!
So i am not going to look like Heidi Klum in a bathing suit and I am okay with that. 

I am not yet okay with the loss of my perfect porcelain skin. I was blessed with a lovely complexion. So even if I was curvy in my bikini my skin was quite pretty and so I hopefully wasn't offending too many people. I would get a nice smattering of freckles in the summer and if I wore sunscreen, I wouldn't burn too bad and would get a nice golden glow. Now to see me in a bathing suit you would think I was some sort of alien torture victim. The entire surface area from my belly button to my knees is covered in welts, bruises...red and purple raised splotches that somewhat resemble hives. And when you have to give yourself injections every other day, by the time one set heals you are already covered with the new round of injection site reactions, so there is no "down time".

Don't get me wrong. I love my magical wonder drug that is keeping MS from eating up my entire brain and slowing the progression of my disease. It is truly a wonder drug and without it I shudder to think what would happen. I try to think of these bruises as Battle Scars...the proof of the ongoing battle I do with the MonSter and each welt represents a win for me! 

That is until bathing suit season arrives...and then I feel sorry for the poor people that have to look at my skin, and think A) I am very clumsy and walk into things constantly, or B) I am starting some strange and entirely unattractive tattoo trend.

Plus isn't going to the beach supposed to be a "vacation"? It is very hard to feel like you are on vacation when every time you suit up and look in the mirror you are slapped in the face with the reminder of your disease. And I haven't even mentioned my Favorite part about summer nowadays.
Two words: Heat Intolerance

See, for people with MS, getting overheated can cause really bad things to happen. They exacerbate current symptoms, can temporarily bring on new symptoms and basically just make you feel really, really awful. When my body temperature rises usually the following happens (in no particular order): my vision goes completely to crap and even magical glasses do nothing to help, the ringing in my ears becomes deafening, my hands and fingers do this buzzing/tingling sensation which is often followed by numbness, my feet and toes go numb and my legs start burning in pain and finally the Boa Constrictor grabs me around the middle for a big ole hug. Once this happens the cooling down process (getting into someplace with A/C and covering myself in ice packs) can reverse some symptoms. Others will then require medication. Then once all painful symptoms are under control you can return to the beach or the pool for Round Two. Lather, rinse, repeat. 

I think the beach can be a lovely relaxing place. I used to enjoy sitting under an umbrella with a crossword puzzle and a cold fruity beverage, watching the waves roll in. I have even been known to make a sand castle or two in my past. But it is very hard to relax when the heat brings on such painful things. As luck would have it, the beach is my husband's #1 vacation of choice and he is like a kid at Christmas when you put him on some sand in front of an ocean. 

We are headed to the beach with some friends this holiday weekend. I am packing my usual array of sunscreens, bikinis, cute cover-ups and hats, crossword puzzles (some large print!), my ipod and flip-flops. I am also bringing the 5 bottles of medication I require daily plus 3 injections, plus all 6 ice packs from my freezer. And I try to remind myself that "going to the beach" is really just an excuse for a change of scenery, to hang out with friends and maybe get a few new freckles. It doesn't require sitting 24/7 under the blazing sun. 

And if anyone asks, "Oh my! What happened to your legs and your stomach? What are those?"

I simply reply,"Those are my Battle Scars, thank you very much."

Quote of the day

"Every day may not be good, but there's something good in every day."

- Anonymous

Fear not for the future

Do you ever feel as if you are rushing every day towards the future, often barreling forward at such a speed that you are forgetting to stop and smell the proverbial roses?

I have been one of those people most of my life and while in many ways, MS has helped me to slow down, in other ways I feel more pressure than ever to keep moving forward, often at an unrealistic pace.

Last week, there was a segment on CBS Sunday Morning about a woman in her late 50’s who had been living with MS for over a decade. Her passion was climbing mountains. Literally. Like Mt. Kilimanjaro or crazy big mountains like that. She had set a goal for herself to summit a certain number in a set time period. What struck me was during her interview she said something to the effect of, “I want to do as much as I physically can before my disease progresses further and makes it impossible. I will climb as many mountains as I can before that day comes.”

There is a quote that pops up in numerous books on MS and on websites: “Hope for the best. Prepare for the worst.” After reading this phrase a zillion times I finally realized I had rarely processed the second sentence. I had been too busy hoping for the best! This fellow MSer on my TV seemed to be doing both. She was pushing her body to its physical limits while she still had a choice in the matter…before MS took it from her in bits and pieces, making things like mountain climbing next to impossible.

Suddenly I felt this incredible weight in knowing that I, too, could potentially have a much shortened “quality of life”. Sure, I could also be hit by a bus tomorrow and obviously we cannot live our lives paralyzed by fear of the unknown future.
On the other hand, there is a word I have had a hard time mentally digesting: degenerative. I think overall I have handled my diagnosis better than most and I digest other words pretty darn well. For example,

Chronic: means I don’t ever get a vacation from MS. It is with me all the time.

Incurable: I get to have this stupid thing until some brilliant scientist somewhere figures out how to make it go poof!

Neurological: affects my brain, and in turn my central nervous system, so basically everything (except my striking good looks)

But, Degenerative: something which worsens over time…

And yet there are so many MSers out there who have been on one of these fabulous drugs and have been relapse free for years! YEARS! That is awesome. Then there are MSers on the exact same drugs who have relapse after relapse and get progressively worse and worse. And no one knows why that is and hence the frustration of scientists trying to cure such a tricky disease.

So what now? Do I finally update and complete that life list of mine trying to check everything off at lightening speed in hopes of outrunning MS? Sounds difficult…and exhausting. But in 10, 20, 30 years I don’t want to look back and say “If only…”

Sometimes it feels like such an effort just to get through any given day. The thought of taking on something as mammoth as mountain climbing (or whatever else is on your life list)…well, it just feels impossible. Where do you begin? HOW do you begin? Which goal do you choose to complete first? Sing the national anthem at a sporting event? (been on my list since 1991) Swim with dolphins? (been on the list at least that long) Own my own home? (Check!) Own my own horse? (I think this was one of those When-I-Win-The-Lottery goals…) Travel to Europe? (Certainly not with the current exchange rates!)

And the list goes on and on. It doesn’t even include all those everyday things in life that I want to do like entertain in our new home and throw all sorts of parties: tea parties and cocktail parties and sing-a-long parties and wacky theme parties and Halloween parties. I want to learn to be a better cook and how to make a perfect dirty martini like my husband can. I want to FINALLY get my house done and in order and furnished. I want to do all sorts of traveling. I want to be a better calligrapher and a better singer and teacher and choreographer. I want to figure out what I want to be when I grow up and make new friends and visit with old ones. I want to go to comedy clubs and go to Broadway shows and watch improv and visit art museums. I want to do all these things andso much more.

What if my vision continues to get worse and I lose my sight completely? Should I visit all those museums now so that i can at least see parts of the paintings??

Or if I knew I would start having trouble walking, should I do all that traveling now, while I don't have to worry about handicapped accessibility? 

If only there was a crystal ball so that we could all take a peek and know what our future holds.

In the meantime I guess we just do the best we can to Live in the Present and enjoy it as much as possible. 

Happy Anniversary

It was a year ago that I heard those fateful words, "You have MS."
Some people might find it strange to "celebrate" such a day.
But I celebrate the fact that despite living with an incurable degenerative disease, I still find so many ways to enjoy life and to hopefully bring joy to others.

I celebrate because in spite of my recent relapse I have what my doctors deem a "stable" MRI and no new permanent damage.

I celebrate that I have found ways to help other people living with MS and raising awareness and money towards someday finding a cure.

My vision certainly isn't what it used to be...and maybe I have balance problems and days where I can't walk straight. I am in pain a lot more than I wish to be and numbness in my feet and hands makes for many clumsy days.
But looking at the big picture I consider myself very lucky to be doing as well as I am. There are many people who have far worse burdens to bear than mine. There are people who have to face this disease or other horrific diseases without the amazing support of family and friends like mine.

So to all my faithful readers out there (all 7 of you...Hi Mom!) Thank You for letting me put my thoughts and fears and joys and sadness out into cyberspace and for following me on this wacky journey. The adventure is only beginning and there are many more ways to help and to fight and laugh along the way. Thank you all for being my traveling companions as I walk down my own yellow brick road of life...wearing my red shoes!
Much love,
Caroline

WalkMS 2008

While the final tally is not yet in, as it stands today Team Wearing Red Shoes has raised over $13,700 is the TOP fundraiser for the Marietta WalkMS and is #3 fundraising team in the entire state of Georgia!

All I can say is Wow.

I am so honored and so humbled by the generosity of so many people.
Our entire team completed the 5k cheering and dancing across the finish line in our red shoes.

What a wonderful event it was. The NMSS did a great job organizing and planning. And I was never more proud than when Roy announced "...our top team in first place...Wearing Red Shoes!" Amazing.

At one point right before the race it was asked for a show of hands in the 900+ crowd of how many people out there were currently living with MS. I was surprised at the small number of people that raised their hands as I waved mine in the air. Then it was asked how many people in the crowd were there because someone they loved was living with MS. The cheering and clapping was deafening.

It goes to show that even with a mysterious neurological disease such as MS, I am never alone in my daily battle. I am surrounded by so many people who love me and fight with me. They pick me up both literally and figuratively! And I have never felt that love more than on April 19, 2008 when I looked down at my family and friends and was surrounded by 22 pairs of beautiful, inspiring and powerful Red Shoes.

Music, Mummies and Martinis for MS!

If you live in the Atlanta area and don't have plans this Sunday night, feel free to join us for Music, Mummies and Martinis for MS!

The National MS Society is hosting a lovely cocktail event fundraiser at the Michael C. Carlos Museum at Emory University. Enjoy a variety of musical performances as you stroll through the galleries, visiting the Egyptian exhibits currently on display (hence, the mummies). Your donation includes as many trips as you wish to the martini & wine bar plus heavy hors d'oeurves.

Chris, Mom, George and I have purchased our tickets and will be there with bells on! Well, no actually I will be there with red shoes on! Gotta keep up my Wearing Red Shoes image and all. ;-)

If you would like to join us, click on the link below and then click "Buy Tickets" and your name will be added to the guest list at the event. If you cannot make it, no problem...there will be many more fun and exciting events in our future....

http://gaa.nationalmssociety.org/site/Calendar?view=Detail&id=158590

Wearing Red Shoes

At a recent dinner party my dear friend Bob asked me,
"So why 'Wearing Red Shoes'? I mean, why is that your chosen blog name and now your Walk MS Team Name?"

And I thought, you know, I bet there are alot of people out there who don't know where Wearing Red Shoes comes from. Ok, maybe alot of you DO know, but it is a good story so here goes:

Once upon a time there was a little girl named Caroline.

When Little Caroline was 2 years old a movie came on television. Her parents debated whether or not this movie would be "appropriate" for a child her age. They worried certain parts might scare her. They did not know that Fate was stepping in that day bringing Little Caroline and her beloved 'The Wizard Of The Oz' together for the first time.

(And yes, she did refer to it with the extra 'The'...no one really knows why!)

She sat completely mezmerized until the credits began to roll and she asked to see it again. The asking continued for several days, until finally her parents went and bought Little Caroline her very own copy of 'The Wizard of the Oz'...on Betamax, no less!

For days...weeks...months, Little Caroline would watch her movie. Before long she could recite every line and sing every song. And then 3 year old Little Caroline decided her name would no longer suffice and she informed everyone she knew that her name was now Dorothy. But what mattered even more than the name were the Shoes. For YEARS to follow Little Caroline refused to wear any pair of shoes unless they were red. Red dress shoes, red sandals and flip flops, red sneakers...They all had to be RED.

Little Caroline dressed up as Dorothy for Halloween more times than anyone can count. She dressed up as Dorothy when it wasn't Halloween! When she was a little older her parents brought home a Cairn Terrier and they had of course named it Toto. Her favorite song of all time is still "Over the Rainbow". Her home is covered with Oz memorobilia. On her happiest days Oz has been there for her. On her darkest days it has been there too.
And when time or circumstance did not permit the watching of the actual movie, nothing made her feel closer to Oz than one of her pairs of red shoes.

My obsession with The Wizard Of Oz could fill the pages of blogs from here to eternity. The reasons I love its story, its myths and legends, its message and morals, its cast and music and so much more. But today we are talking about the shoes. There is something about a pair of red shoes that is truly magical.

Wearing Red Shoes makes you stand a little taller...

Wearing Red Shoes protects you from Wicked Witches...
Wearing Red Shoes can help you find your way home again...

Wearing Red Shoes just makes you feel like everything is going to be alright.