Seriously...WOW

I am sorry this particular post is so late, but just had to take a moment to share...not only was Team Wearing Red Shoes the largest team in the Marietta Walk this year, with 57 members, but we were also this year's top fundraisers as well raising $13,491!!

Thank you ,Thank you, Thank you to all of our walkers, our wonderful supporters and donors.

I hope that we will only grow and grow each year with red shoes taking over the Marietta Square...then the state of Georgia...the entire country....maybe even the world!!!

This past Sunday was my 2 year dx anniversary, a day which I wish I could forget, but unfortunately I am very good with dates. It is a hard day for me, and filled with many emotions. Chris and I had a quiet day together, going out to lunch and going shopping and other small things to distract me from being bummed out.

There are so many wonderful days throughout the year that are worth celebrating: people's birthdays and anniversarys, holidays spent with family and friends. The anniversary of a diagnosis of an incurable disease is slightly less worth celebrating. It is more of a "this is the day your life as you knew it changed forever" and while I know that MS is just another card in my deck now, it has a way of finding its way to the top of that deck more often than I would like! The MonSter is such an attention-stealing drama queen!!!

So I have lived with the MonSter in my house and in my life for two years, and while I have had more relapses than I or my doctors would like to see, I also have not had any significant disability progression, i.e. I am at the same level of basic functioning that I was 2 years ago. And I am grateful for that, I really truly am.

It helped alot that the walk was so close to this icky day, and the memories of what an awesome day it was were still fresh in my mind. I mean, not only did we take over Marietta in our red, raise a TON of $$$ and have the largest team on the square, but I got to sing the national anthem!!!! That has been on my "lifelong to-do list" since I was around 10 or 11 years old! What a fabulous way to check that one off the list.

Thank you again everyone for making WalkMS 2009 such a wonderful, memorable day!
Lots and lots of love,
XOXO

My Name is Mud

While the term "brain fog" is recognized as a synonym for "cognitive dysfunction" by Wikipedia, I have decided that I much prefer " brain mud".

Fog is light and airy, it whooshes in quietly and of course puts a nice cloud cover over everything so you can't see what is five feet in front of you. You grasp for thoughts and pluck them out of the fog, you walk through its cold dampness feeling pretty out of sorts and perhaps a tad lonely.

Brain mud...now that's a horse of a different color!
Mud is messy and dirty and sloshes around and gets all over your boots and your jeans and even splatters up on your face if you are trying to walk too forecefully through it. Before you can pluck a thought out of mud you have to dig your hands down into the squishy, gooey muddy mess. It is disruptive and infuriating and did I mention, messy??

I am definitely in the midst of a big ole brain mud puddle!

Though I am glad I chose to do 3 days of IV Solu-Medrol (it has helped a lot with my burning leg pain) the vertigo is still hanging on and the brain mud is making me crazy! It doens't help mattters that I have 2 big papers due and a final exam all in the next 10 days before the semester ends. Having a registered "disability" means I can take incompletes if I have to, but that really is a last resort. I don't want incompletes hanging over my head and stressing me out further!

I have been trying to write one of my papers today while I am home resting and I find myself with the complete inability to get thoughts out of my head onto paper and extreme difficulty concentrating. It frustrates me to no end! I know its only temporary and with each day the inflammation in my brain will lessen and I will start to feel better and think clearly again
Just ike coming out of a fog...
Or rolling out of the mud...and hopefully into a "hot and steamy, absolutely dreamy, finally out of trouble, bubble bath" :-)

Chariots & Roid Rage!

In comedy, timing is everything. When I used to perform and act in shows I was always known for having superb comic timing. It would seem that my timing is still in tact, though at the moment it feels more like dark comedy!


I have been battling vertigo and "brain mud" for well over a week, and last Wednesday afternoon both my thighs lit on fire from the inside out and wouldn't give up. After living through 4 MS relapses in my (almost) 2 years with the disease I am starting to learn its patterns and signals and sadly, each and every relapse has involved vertigo, brain mud and burning nerve pain in my legs (among other things, too sometimes!) So I went to Shepherd Center Friday morning (thanks Alice for chauffeuring me!!!!) and Dr. Loring agreed it looked and sounded like a bit of a flare-up and suggested hitting getting 3 days of IV steroids infusion going ASAP.

The timing could not be worse (like I said dark comedy. Very dark comedy).

WalkMS was yesterday and our team of over 50 people raised over $12,700 and as their team captain I was supposed to be leading them to victory at the finish line and celebrating alongside them as they have all supported me in my journey with the MonSter.

Instead I "walked" by riding in a wheelchair borrowed from Kennestone hospital (it was red though! Way to go Dad for finding a red chair!!!) I can still walk, no need for alarm, but my doctors strongly advised against walking 3 miles while in the midst of this relapse. I am weak and dizzy and it was not wise to try and push my body past its limits right now. So I rode in style, pushed along by my family and friends in a beautifully decorated red chair, while wearing my red shirt and fabulous red shoes. It was certainly not how I envisioned WalkMS 2009, but after I swallowed my pride about not being able to "walk" in the Walk, it turned out to be a simply beautiful day with my very favorite people in the world.

So I just finished the final day of my IV infusion and am fighting a bit of the steroid blues: irritable, heart racing out of my chest, violent mood swings, and the lovely metallic taste in my mouth. Ah, the joys of Solu-Medrol. haha! Tomorrow the crash will begin and by Wed the light at the end of tunnel will appear. I am still too dizzy to drive (or walk through my house without falling into walls!) but I have lots of friends who have offered their chaffeur services until I feel myself again.

Thanks for all the positive thoughts and a special thank you to the amazing Team Wearing Red Shoes...Top fundraisers for WalkMS Marietta two years running!!!! I love you all so very much!
XOXO

Wearing Red Shoes

This is a picture of me, in October 1985 spraying my very first pair of red shoes so I could dress up as Dorothy that Halloween. Dad's legs are supervising in the background as I do some sort of modified dance move, spraying and glittering my shoes.

It is so amazing to me that so many people have joined the red-shoe-wearing/red-shoe-spraying movement to join for WalkMS 2009. And those that aren't able to join us have donated to support us and it means more to me than I could ever say. (I am still working through my thank you notes and emails! Yours is coming!!)

I think I say it alot, but no one fights a disease like MS alone. It takes a village of support, a network of family and friends to cheer you on with their encouraging words when you feel down, their chaffeuring skills when you can't see, their baked goods as you undergo treatment, their patient ears when you need to talk...most importantly, you need to be surrounded with people who make you laugh, and who love you just as you are...flawed, imperfect and in constant battle with a MonSter who never plays by the rules. I am so lucky, so unbelievably blessed to have so many people in my life who provide so much love and laughter and support for me every single day.

Its not too late to join our party this Saturday, April 18th:
http://main.nationalmssociety.org/goto/wearingredshoes

C'mon...you know you wanna put on those red shoes!
(I am seriously thinking about trademarking this phrase!! haha)
XOXO

Lemons

There are so many cliché phrases about fruit.
“Life is not a bowl full of cherries.” (my Mom’s favorite when I was a kid)
“ Nobody likes a sour grape.”
“An apple a day keeps the doctor away.”
“When life hands you lemons, make lemonade.”

I think the problem is that I much prefer to cherries to lemonade.
In fact, I so destested lemons as a young child that my parents used to hand me lemon wedges and encourage me to eat them just so they could laugh hysterically at the awful, puckered faces I would make (true story!) I then went on to name lemons “yucks” and called them that for years.
“Lemon” is also the word we use for a car that is sort of broken from the start…a dud. Most states have Lemon Laws, in order to protect buyers against unknowingly purchasing a lemon.

Unfortunately, I think I may have gotten a “lemon” body.

At every turn it is failing me. In fact, it actually began failing me at age 6 when I became very sick with Juvenile Rheumatoid Arthritis (now I think they call it Still’s Disease, but same thing). At first no one could figure out what was wrong. They thought leukemia, and a host of other things. I ran high fevers constantly, my lymph nodes and spleen were swollen, as were most of my joints. I was in a lot of pain most days, which is partly why I believe my pain tolerance is higher than most. It feels as though I have spent much of my life managing some sort of physical pain.

So I am stuck behind the wheel of this “lemon” with no way to trade it in! It is completely unfair and some days all I want to do is scream and throw things. Most days I remind myself that others out there are living in “lemon” bodies too, and I am not alone in that. We just have to try and the make the best of what we have, to “keep on keepin’ on” as my Granddaddy says, and to still find ways to live out dreams, even if they are a little soured.

Copaxone Caroline

It is about 6 weeks into Copaxone, my new Wonder Drug, designed to slow the progression of MS, minimize relapses and new lesions forming. I suppose only time will tell if it is doing its job. I go back for an MRI in July and I can only hope that between now and then I remain relapse-free and that my brain and spine remain lesion-free!

It is so funny to me how differently each drug can affect you. With Betaseron I got horrible injection site reactions, ran fevers, felt like I had the flu, was achy, got chills, sometimes nausea. But the symptom most warned about with that drug is depression. Apparently with interferon injections you can get Really depressed Really fast and most doctors recommend at least a low-dose anti-depressant preventatively so you never reach that icky low drug-induced depression.

Copaxone is advertised as causing no flu-like symptoms and being less likely to cause depression in patients. Though people warned me the injection site reactions could be far worse (especially since it is every day, and not every other day) So leave it to me to have the opposite reaction that is "normal" or "usual".

What is it Luisa from "The Fantasticks" says...."Please, God, please. Don't let me be normal!"

The first few weeks on the drug the fatigue was awful. I would wake up, my mind was awake, but my body wouldn't do anything I told it do! Wearing a fur coat in a swimming pool filled with molasses kind of fatigue. While that has gotten much better, I have had more headaches over the past 6 weeks than I have had in the past 6 years. The injection sites are getting better as I get the hang of how and where this drug likes to be injected. Annoyingly, every injection burns like a bee sting for about 15-20 minutes. Ice packs seem to help ease the sting a bit, as does distracting myself by talking to a friend for those 20 minutes (thanks, Kimmy!)

But the thing that has bothered me most, that I have found most disconcerting is the appearance of a new unwelcomed persona: Copaxone Caroline. I never know when she will show up and take over my body/mind/soul. She appears for mere minutes, or sometimes stays a few hours. But then she always departs, leaving no trace of her visit behind. One minute, I am watching a fun show on tivo, folding laundry, humming a tune, looking forward to dinner with a friend, then...

BAM! Copaxone Caroline shows up: This tv show is horrible (why do I even watch this show?), the laundry looks awful (I will need to refold everything so it looks better), I hate singing, I hate all music, in fact and there is no way I am up for having dinner with anyone. I don't even want to get dressed. Ever. Again. I will live in pajamas from now on. And not answer my phone, or the door. Why am I even going to college? I am almost 30 years old! That is too old for college...I will never finish. I should quit. I made lunch but now have no appetite to eat anything. Wait. Why am I crying??!?? Nothing happened to make me cry!! This is insane. I give up. It is all just too much. I am running away...to somewhere. I don't know where. But far away.

Then, BAM!
Huh. That was really weird and awful. The laundry is fine, this tv show is funny, I can't wait to see my friend tonight, I am looking forward to class tomorrow, and what was that great song I was humming?

If it sounds like some sort of split personality disorder, well...trust me. It feels like it, too!
At first I thought I was really becoming depressed, maybe my body was trying to tell me to deal with some subconcsious issues I had been supporessing. But try as I might, I couldn't figure out anything and these moments kept cropping up. Not every day, but certainly a few times a week. Very scary. Very disconcerting.

In the end (and with the wise opinions of my medical care team) I realized these moments of despair are totally drug-induced. My body is reacting to the massive amounts of medicine I keep injecting into it every day and right now, it isn't too happy about the whole ordeal. With each visit from Copaxone Caroline I just have to say to myself,

"Just ride it out. You are ok. You are fine. This will pass shortly and you will feel normal again"

Or as normal as I ever feel! :-)

Montel Williams was on Oprah recently talking about his MS (thanks Jennifer for the heads up!) He talked a lot about the depression caused by these medications and also the depressiong that the disease itself can cause. He, too, experiences moments of sheer despair, crying out of nowhere and other bizarre emotional responses. And he was able to find the humor in it, as so many of the MS community does every single day.

So, a warning to my loved ones out there: I sincerely hope you do not receive a visit from Copaxone Caroline, but should she appear, bawling for no reason, seeming apathetic or irritable, just know that her visits never last long (thank God!) and when I return to take my rightful place in this body, I will then spend the next 10 minutes making jokes at my expense and poking fun at how ridiculolus Copaxone Caroline is. And my dear friends who know me best, will laugh right along with me, perhaps poking fun at her as well. Because they will know, as I now fully appreciate, that I am NOT nor never will be someone who gives up. I am more of a fight-to-the-death kinda girl. Kicking butt, taking names, and laughing alot along the way.

But your labs look great!

A very quick update from the world of Caroline's bloodwork:

I had my appt with the rheumatologist to get the results of the 8 vials I recently gave them and according to my doctor, my "labs look great".

In doctor-speak, this means "Obviously there is something wrong with you because your eyes stopped producing tears, but your labwork says you are 100% fine, so we don't know why your eyes just gave up".

So while I currently cannot be given a clinical diagnosis of Sjogren's Syndrome or some other autoimmune disease, according to my doctor it is a watch-and-wait thing now. She says there is a distinct possibility that it will turn out I do have Sjogren's or even Lupus, but as of today neither can be confirmed. Follow up labs in 6 months.

In the meantime I am trying these new things called Lacriserts which look like little grains of rice, that you insert carefully below each eyeball and then they release gel-like substance up onto your eyeball throughout the day. It sure beats having to put eyedrops in every 20 minutes, but they are not easy to put in (they are TINY and if you drop them on the floor you can forget finding them again, plus they are no longer sterile! and the double vision makes putting mascara on hard enough, much less putting tiny rice things into my eyes!!) and they only last 6-8 hours so I usually need 2 sets.

I am trying to be patient but some days I just want to rip my eyes out of my head they hurt so badly from the dryness. Usually I reach the point at night where it hurts too much to keep them open and Chris and I "watch" TV together and he tells me the funny visual things I am missing while I listen.

The good news is that it is the end of March...and my last MS relapse was in mid-late November, which means I have gone 4 months without a relapse! Which after 2008 is a new record! haha
I just know the Copaxone is going to be the right choice for me. Feeling hopeful that it is working makes having to do injections every day a little easier :-) Though I did tell my doctor I was giving myself my birthday off from injections: my present to myself! Everyone needs at least one "mental health" day a year.

This saturday was our second annual Shoe Spraying Party for Team Wearing Red Shoes. I am so excited. We have a really big team this year and I know it is going to be a great walk with so many of my favorite people there and wearing their red shoes! It is not too late to join us:
http://main.nationalmssociety.org/goto/carolinekulinski

Cmon, you know you wanna put on those red shoes ;-)

Awareness Fact #7

On this final day of MS Awareness Week I leave with you this...
There are currently several FDA approved treatments for slowing the progression of MS and the National MS Society recommends treatment with one of these disease modifying drugs as soon as possible after being diagnosed in order to help maintain a FABulous quality of life for as long as possible!

I am so blessed to have a wonderful team of doctors and nurses that help me navigate my treatment options in order to manage my MS and help me to do the things I want to do.

Though there is no cure...yet...I have hope that one day we will know a world free of MS. And on that day I will invite you all to a Wearing Red Shoes Dance of Joy event, in which we will...well, wear our red shoes, and dance for joy that the MonSter has been eliminated forever!!!

Awareness Fact #6

Multiple sclerosis causes a wide range of symptoms. That being said, some of the more common ones are extreme/abnormal fatigue, numbness/tingling, balance/coordination problems, muscle weakness, nerve pain, spasticity, tremors, blurred/double vision and vertigo.

Heat, infection and stress can worsen symptoms and/or trigger relapses.
So I try and stay cool and avoid illness as much as anyone can...still working on that last one. If anyone out there has a cure for stress, I am all ears!!! :-)

Awareness Fact #5

The way MS does its damge is by attacking myelin.
Myelin is the insulation that surrounds nerve fibers in the brain and spinal cord.

Think of myelin like the insulation around an electrical wire...and MS just bites into it at various places, causing the electrical/nerve signals to get all messed up.


This is also why people with MS are so sensitive to heat. If the body's electrical system gets too hot, it short circuits causing wacky things to happen! Luckily, once the core body temperature returns to normal, usually the system "reboots" and you are back to normal. :-)

Awareness Fact #4

Important numbers:
Over 400,000 American have MS.
Over 2.5 million people worldwide have MS.
The majority of people are diagnosed between ages 20-50, though the diagnosis age range is actually 2-75!

More events to come!

Just a quick reminder
Tomorrow night, 6-9pm
"Shop for the Cure"
at Cherry Pie: www.cherrypieatl.com

Also, I just got word of a wonderful event being hosted by my new friends Zach & Melissa Polun at the Sweetwater Brewing Company
Saturday, March 28th, 1-4pm.
For details: http://mssocietysweetwater.blogspot.com/

What creative fundraising ideas people come up with!
Beer tasting for MS? Sounds good to me!

Awareness Fact #3

The progression, severity and symptoms of multiple sclerosis are unpredictable and vary from person to person. Sometimes symptoms will appear, then disappear completely. Other times they come and go more regularly. Chris and I have learned an important lesson from this: Always get travel insurance when planning fabulous vacations!! :-)

Awareness Fact #2

Multiple sclerosis is not contagious and it is not fatal.

(This means you can hug and kiss on me as often as you like!)

MS Awareness Week!

Today marks the beginning of MS Awareness Week.
I am fighting a nasty cold but nevertheless will try my best to post wacky facts about MS every day this week.
Other exciting events happening this week:

"Shop for the Cure"
Wednesday, March 4th
6:00-9:00pm
Cherry Pie Boutique
Come shop with us at my favorite store in Vinings and 20% of the evenings proceeds will go to the NMSS in honor of MS Awareness Week!

Yoga in the Park
Saturday, March 7th
11:00am
Piedmont Park
Yoga for all levels in beautiful Piedmont Park (hopefully with less snow by then!)
http://www.nationalmssociety.org/chapters/GAA/index.aspx

If you have an orange MS bracelet, wear it all week long, so if people ask what it's for you can tell them about MS, about your fabulous friend Caroline and invite them join/donate to WalkMS 2009! If you don't have one, let me know and I will make sure you get one!


Fact #1: Multiple sclerosis is believed to be an autoimmune diease, though this has yet to be 100% proven by science. Like most autoimmune diseases, MS affects twice as many women as it does men! We women get all the fun... :-)

Play

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

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

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

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

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

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

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

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

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

I'm. So. Tired.

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

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

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

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

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

Ramblings

I am always so excited when people comment on my blog, or email me to say they were reading it. It is nice to know that what I write is at least somewhat interesting to others. Many days it is just an outlet for me, a place to put my thoughts and the bazillion emotions churning around. Other days it is a quick way to keep my loved ones informed. I am always amazed when people I have never even met comment on my blog, to offer good wishes and advice. People are so awesome. So it would seem, as indicated by the kind comment on my last blog (and by further internet research) that Sjogren's is still somewhat on the table. I guess a negative blood test is a good sign, but does not necessarily mean I am off the hook. Obviously I will keeping my previously scheduled appt with the rheumatologist!

Also, I went and got another opinion on the bulging disc in my neck and the orthopaedist agreed that it was pretty bad. He could even see that it was herniated on an xray. Yuck! I started physical therapy last week and I am really Really hoping that the disc is pushing on my nerves. (Who ever thought Anyone would hope for such an awful thing?!?!) In my defense, and to let you know that I am NOT a masochist, if the disc is responsible for my arm nerve pain then that means there is actually SOMEthing I can do about it, rather than curse the MonSter for a symptom I can do nothing to cure. My left arm has by far been my worst nerve pain, so what a complete JOY it would be to kick that left arm pain to the curb.
Only time will tell as I diligently try whatever my physical therapist tells me to try and wait patiently to see what happens.

In other news, I am once again duking it out with the insurance company over paying for medication. Dr. Thrower wants to switch me to Copaxone, another injectable drug designed to slow down the MonSter. Good news is that it is said to have less side effects and I won't wake up in the middle of the night with fever and chills as often; Bad news is that it is an injection every day which is a bummer. I try not and be too whiny about it, because one of my favorite uncles has to give himself at least 5 shots every day to manage his own monstrous disease, so when I feel a pity party coming on I remember him and if he can do 5 I can do 1.

Oh and my insurance is Totally going to pay for this drug, they just like to make me jump through hoops of fire while twirling batons and singing the national anthem just to prove I Really want this medicine. So when I have jumped high enough for their liking, they will pony up. :-)

In the meantime, we are gearing up for an exciting year: WalkMS 2009 is officially on the calendar and Team Wearing Red Shoes is up and running! 6 team members and counting...but my goal is to have 30 people on our team this year, so links will be below- sign up!
Also, we have two big weddings this year and lots of wedding-related fun events. Our dear friends Steven & Tiffany are saying their "I Do's" in April, then Chris' brother Matthew is marrying our soon-to-be-sister-in-law Katie in May. I love it when people I love get married.

I am sorry this blog lacked a solid theme. I usually try and be more cohesive in my thoughts and writing, but tonight my brain is just rambling on and now so is my blog. Time to go do PT exercises before bed and enjoy my "nights off" from shots while I still can! :-)

See below for link to my WalkMS page. From there you can join the team and/or donate. We know its a rough year out there, so all we ask is enough to keep the MS research alive and well.
Every little bit counts!
http://main.nationalmssociety.org/goto/carolinekulinski

Good, Bad, Good, Huh?!?

First of all, people never cease to amaze me.
Here I am going through all this craziness and as I share my thoughts with the world, not only do my family and dear friends cheer me on with emails, phone calls and comments but then perfect strangers also send me their thoughts and well wishes! People are truly amazing.

Chris and I woke up early on Wed morning for MRI Take Two! I woke up at 6am, took my doctor-prescribed Ativan at 7am and by 8am I was telling the technician that I was planning to sing show tunes while I was inside the MRI machine! (The tech informed me it would be better if I did NOT sing show tunes. We finally compromised on me singing them in my head instead of outloud). No, I am not making this up! As I changed into my attractive cotton gown for the machine, Chris apologized to the tech informing him I was "high" on Ativan. The tech just laughed and said I wasn't the first! hehe. Frankly, I could care less if I made a complete fool of myself because I made it through the MRI! Yippee!!!

An hour and a half later (now slightly coming down off the Ativan!) we met with Dr. Thrower for the results of last week's blood work and of the MRI:

The Good: I have no new lesions in my brain! Yippee!!! Clean brain!!!!

The Bad: I do have a new inflamed (aka "active") lesion on my spinal cord. A lot of people don't realize that MS can cause lesions on both the brain and/or the spinal cord. And this week we discovered my first cord lesion. SO annoying and unpredictable this disease. This little bugger is in my neck area and it may or may not be responsible for the nerve pain in my left shoulder/arm that has been visiting ever since the summer. Sooo, that means the medicine I have been on isn't doing what we hoped it would (it is supposed to keep new lesions away, in theory). Sooo, I am in the process of switching from Betaseron to Copaxone. Hopefully by next week Aetna will have approved this new med and I will be on my way to switching over. I am nervous about it and a little scared, but optimistic that it will work better for me and jive with my body chemistry and keep me lesion-free for years to come!

The Good: My blood work came back normal, meaning the Sjogren's antibodies were negative, meaning as far as we can tell I do not have Sjogren's Syndrome. Yay! Still NO idea why my eyes gave up producing tears, but I am hopeful that this is all just a weird reaction to too many steroids and they will come back in time.

The Huh?!?: The MRI also showed that I have a bulging (herniated) disc in my neck between C6 and C7. Wh-what?!?! How random is that? I have NO idea how this happened, as it did not show on my MRI a year ago. Even more interesting is that there is a chance that this disc could be responsible for the nerve pain in my left arm! In the fight of the century, my spine lesion and my herniated disc are dueling it out for the title of "Nerve Pain Causer"! Dr. Thrower has recommended I start PT ASAP to try and get the disc to chill out. Stay tuned to see who wins this duel and claims the title!

Needless to say it has been an exhausting week. I had a good bawling cry Wed night about the whole thing and since then I am coming to terms with all the news and working my way through the 5 million emotions that come with it!

Again, thank you so much for all the love and support. It means so much and on the bad days is what keeps me going. I have hope for the new year. I truly believe 2009 is going to be a good one. I turn 30 this year. I am starting on a new medicine which I just know is going to help and make me feel better and keep the MonSter quiet. The economy is crap, true, but it is often in tough times when people pull together, lean on each other and do amazing things for one another.

No One is Perfect...Least of all Me

Well I arrived at Shepherd Center at the bright and early hour of 7:15AM. For those that know me, I am NOT a morning person, but I was in a good mood, ready to get the show on the road.

I signed in, joked around with the MRI technician. He found my vein quickly and easily, shot me full of the special gadolinium dye material. He gave me a blanket, secured my head so I wouldn't move during the scan and into the tube I went...

And then I don't know exactly what happened.

I have had my fair share of MRIs. I am good at them. I close my eyes as soon as I lay down so that I don't see the cage over my head or the tiny metal tube I am then shoved into. I keep my eyes closed the whole time, picturing myself laying on a picnic blanket on a lovely autumn afternoon at the Garden Hills duckpond. And then I sing showtunes silently in my head while the machine whirls away around me.

But this morning at 8am the machine started and I felt like I was going to pass out. My body got extremely hot, my eyes were burning (maybe I didn't moisten them enough before I closed them??) I completely panicked. I squeezed the button to let the tech know something was wrong. He came running and pulled me out of the machine. We got to talking trying to figure it out. Did the dye infusion make me feel woozy for a minute? Why did I feel so hot when the machine started, but as soon as I was out felt fine? I mentioned my new eye plugs. The tech asked was there any metal in them? I didn't think so. But of course he insisted we check to be sure. A couple of phone calls later, my eye doctor is certain the plugs are completely plastic, which means I just had an old-fashioned, run-of-the-mill panic attack.

I am so mad and disappointed in myself that I could just scream. I begged the tech for a do-over, but of course now he has to have formal written documentation from my eye doctor stating there is no metal in the plugs. No one wants to get sued, and I can respect that. I thanked the tech for his time and apologized for the 50th time and he smiled and said not to worry and we would reschedule soon. I called my eye doctor back asking them to draw up a document and fax it to Shepherd as soon as posisble. Meanwhile I am simply sick to my stomach over acting like a complete baby and freaking out for no reason whatsoever. I promptly walked outside sat on the nearest bench outside the newly reonvated Shepherd Center and then burst into tears.

But I have learned several important lessons this morning:

1. No one is strong all the time. Everyone is allowed and needs to panic and be scared and then cry over acting like an idiot. If nothing else it is humbling.

2. Having "punctul plugs" put into your eyes does NOT mean you will not be able to cry tears. You can still cry. Lots!

3. Stress comes out in surprising ways. You might think you are handling things perfectly well and NOT scared about possibly having Sjogren's Syndrome and NOT completely frustrated over your eyes hurting all the time on top of not being able to see straight and THEN you panic during a routine MRI and you realize you weren't handling things all that well after all, you were merely suppressing it all.

So you work through the emotions like you went through the boxes of Xmas decorations you pulled from the attic last month, looking at each one and remembering it, laughing, smiling, crying, or whatever else you need to do to process it all. Then you wrap them each back up, gingerly, carefully, put them back into their box, into the attic...and you hope and pray that the ceiling doesn't suddenly decide to cave in and drop the box of emotions right on top of your head!

I still get to see Dr. Thrower or Tracy today. So I will get some nice face time to ask questions, etc. I am grateful for that. And hopefully by this afternoon i will be able to laugh at myself as I tell them I panicked in the MRI for no particular reason. And we will reschedule soon, maybe next week if they have something. And I will try not to be so hard on myself and rather listen to my body, which obviously was trying to tell me something this morning.

Lastly, I hope I have not disappointed all of you whom I love and admire. I know we were looking forward to these results and what they would tell us. I am sorry we will have to wait a bit longer. I have always struggled with the idea of perfection, of things being "perfect" and with wanting to achieve some sort of perfection myself. I was a straight A student most of my life (did I mention I now have a 4.0 at Oglethorpe?) and have always beat myself up when I feel I didn't do as well as I should have at something.

Well I can safely say that today, i got a "C", maybe even a "D" at "Passing the MRI with Flying Colors". In fact, I totally failed!!! I pretty much got an "F". And I am still me and I am okay and I will laugh about it and laugh at myself and in the grand scheme of things it is not a big deal.
I am not perfect.
No one is perfect.
And how boring life would be if we were.