You knew it was only a matter of time, right?
I am putting on my red tennis shoes (which are very stylish by the way) and walking to raise money for MS on Saturday, April 19th at the Marietta Square! I am putting together a team of champions to help me raise a few bucks and to walk with me...and red shoes are a MUST!
For more info follow the link to my webpage:
http://www.nationalmssociety.org/goto/carolinekulinski
From there you can join Team Wearing Red Shoes and/or donate to support us!
Email bombardment will soon follow...
Thanks in advance for your support everyone.
I am very excited about my first (hopefully of many) MS fundraising events.
XOXO
Thursday, February 28, 2008
Tuesday, February 26, 2008
Rock & Roll
As many people know, I am in a rock band. I started singing with PARADOCS back in 2003. The group was started by a couple of doctors (my dad being one of them) and we have done many concerts to benefit various charities over the years. Well, this past Saturday we were asked to perform a 1.5 hour set at Cowboys to help raise money to save the historic Strand Theater on the Marietta Square. What can i say? We love to rock out for a good cause. The numbers are still coming in, but last check we raised over $7500 and I think people had a really good time, too. I know all of us in the band sure did.
While I was up there I felt pretty great. The adrenaline, the crowd cheering, music I love to sing....I held up pretty well. I got pretty dizzy once (luckily we thought ahead and had a stool nearby). I sat for a song, dizziness subsided. My worst fear was the "boa constrictor" making an appearance which would make singing quite a challenge, but he stayed away. yippee!
In the hour that followed, however, my body let me know exactly what it thought of me pretending I was a rock star...and I don't think it approved. My feet both went numb fairly soon after and have stayed numb since then. Its annoying and i just have to be careful so I don't fall or anything. Sunday morning brought the ever-popular burning leg pain and....the Boa Constrictor! I knew he would show up sooner or later, but I feel that I can't really be too mad because he let me have that hour and a half onstage without pestering me and that was pretty damn cool. So he has been hanging around for the past 2 days also. My vision is crap and trying to read for longer than 10-15 min makes me dizzy and gives me a raging headache (and my magical glasses aren't doing squat and my new magical glasses aren't ready yet! boooo!)
I was joking with my dad about having to pay the piper after a night of rockin out. Even if you dont have a neurological disease you still have to pay up if you push your body past its physical limits. I guess what is so frustrating for me is that a year ago my physical limits were more on par with a healthy 28 year old. Now they more closely resemble that of a 78 year old! hah. So I guess if I want to be a rock star for a night and sing a few songs with my band, not only do I have to rest all day beforehand but I have to rest for the 48 (72?) hours afterwards as well, not to mention pay the price of whatever painful/annoying symptoms the MonSter wants to throw at me.
So I can't feel my feet and my legs hurt like hell and my chest feels like it is in a vice and the headache is beginning from trying to write/read this entry....
But you know what?
It was still Totally worth it.
ROCK ON!
While I was up there I felt pretty great. The adrenaline, the crowd cheering, music I love to sing....I held up pretty well. I got pretty dizzy once (luckily we thought ahead and had a stool nearby). I sat for a song, dizziness subsided. My worst fear was the "boa constrictor" making an appearance which would make singing quite a challenge, but he stayed away. yippee!
In the hour that followed, however, my body let me know exactly what it thought of me pretending I was a rock star...and I don't think it approved. My feet both went numb fairly soon after and have stayed numb since then. Its annoying and i just have to be careful so I don't fall or anything. Sunday morning brought the ever-popular burning leg pain and....the Boa Constrictor! I knew he would show up sooner or later, but I feel that I can't really be too mad because he let me have that hour and a half onstage without pestering me and that was pretty damn cool. So he has been hanging around for the past 2 days also. My vision is crap and trying to read for longer than 10-15 min makes me dizzy and gives me a raging headache (and my magical glasses aren't doing squat and my new magical glasses aren't ready yet! boooo!)
I was joking with my dad about having to pay the piper after a night of rockin out. Even if you dont have a neurological disease you still have to pay up if you push your body past its physical limits. I guess what is so frustrating for me is that a year ago my physical limits were more on par with a healthy 28 year old. Now they more closely resemble that of a 78 year old! hah. So I guess if I want to be a rock star for a night and sing a few songs with my band, not only do I have to rest all day beforehand but I have to rest for the 48 (72?) hours afterwards as well, not to mention pay the price of whatever painful/annoying symptoms the MonSter wants to throw at me.
So I can't feel my feet and my legs hurt like hell and my chest feels like it is in a vice and the headache is beginning from trying to write/read this entry....
But you know what?
It was still Totally worth it.
ROCK ON!
Wednesday, February 20, 2008
Balancing Act
EEK! I feel guilty that I have not written in so long. I don't even know where to begin!
My trip to Cherry Hill was FABulous. Jennifer and I have been friends since we were little girls and she is so amazing. Seriously. She is. She and her rockin husband Vince have this gorgeous house and 2 incredible daughters and they are just really awesome parents. Seriously. I am in awe of watching them with these girls...it boggles my mind. Lola will be 4 this summer and oh boy, she is strong-willed and brilliant and talented and funny and so sweet. I know I am biased being her Aunt and all, but Seriously. She let me read her a bedtime story and tuck her in one night and it goes like this,
"Good night Lola,"
"Good night Aunt Caroline. Love you,"
"Love you too, Lola,"
"Aunt Caroline? Can I please have Bumblebee cereal in the morning?" (aka Cheerios)
"Yes Lola, you can have Bumblebee cereal,"
"Thank you Aunt Caroline. I love you. Good night,"
And she's asleep. No fuss, no "Can I have water? I need to go to the bathroom? Can I have one more story?" Sure, she has her moments (don't we all?) but I totally adore this child. And her new sister Lucy is 4 months and cooing and smiling (ok and vomiting lots, but she can't help she has bad reflux!) She welcomed me to Cherry Hill by puking not just on my shirt, but completely Down my shirt. Ahhh, the joys of babies. But other than that she is just plain adorable and I snuggled and held her until my arms were sore but I just couldn't put her down!
The only downside to my trip was the part where I had to say goodbye. Good friends like the Frankowski's are pretty special.
Upon my return from NJ, our friends Steven & Tiffany stayed with us while some work was being done on their house. It was actually really fun! Sort of like playing College Dorm except we didn't all have to share one bathroom! hah I am trying to become a better cook, so I practiced a meal on them and it wasn't terrible. I have zero confidence when it comes to my cooking. I am working on it though and as I make more things that aren't terrible, I feel better about my skills in the kitchen.
The day after they went back home, Chris & I left and spent a long weekend in Savannah. It was relaxing and fun and just what we needed. So now we're back to normal life. We bought a new TV- some fancy enormous flatscreen HD thing - so we are trying to figure out where to put it which will inevitably involve rearranging our living room. Anyone wanna come help move furniture around? ;-)
As for health stuff my body is trying new tricks to piss me off. When I try and do too much or don't get enough sleep or it retaliates by making one or both legs hurt with fiery nerve pain...or my vision goes so double that I can't see squat, get a headache and run into things...or its newest trick: spasticity. The aforementioned "boa constrictor" aka MS Hug (the name I loathe) is one form of spasticity. Basically when the CNS (central nervous system) is damaged (demylination and brain lesions, anyone?) it does this wacky thing where it makes certain muscles contract and/or spasm for no reason at all. Sometimes it is only mildly annoying. Other times it is very painful and makes me crabby. I am playing around with new medicines designed for MS spasticity. Of course, each new drug comes with a price: the glorious side effects!
I have decided that Everything in life is a balancing act. We are all juggling 50 million things. We work hard to make money to provide for our families...but then we are working so much we don't see our families. Or we eat too many cookies this week but then don't go exercise at all because there are too many other things to do. Or we don't get enough sleep and pay for it the next day. Or we take an extra Baclofen and Lyrica so that we aren't in pain but then we either can't stay awake or if we can, we are so loopy it takes us 20 minutes to comprehend a joke on The Daily Show! Finding the perfect balance with anything is a real struggle sometimes.
I don't have any answers yet, but I keep plugging along. Some days are better than others. Some days are god-awful and others are simply fabulous. But that's true for all of us, chronic disease or not.
Other things to report, sadly, according to my specialist eye dr, my vision is getting worse (has gotten worse? whats the correct grammer here??) Whatever. It didn't get better and it didn't stay the same and still only speculation as to why. Brain stem damage? perhaps. My body freaked out when the MS invaded it causing the eye muscle to go kaput? maybe. A second neuro-muscular disease? Unlikely, but still on the table. At some point Why doesn't matter and you just have to say, "Ok fine. So where do we go from here?" (BtVS fans...you know you wanna sing the song) So my Dr prescribed a stronger version of magical glasses to see if they will do anything to help, come back in 3 months and we will see if its better/worse/same. I treated myself to cool, funky new eyeglass frames. If I can't see, I should at least look good, right?
So it is about time to pay my daily respects at the Altar of the MS Gods....or as some people might call it, Take A Nap. I find that if I skip said nap I usually pay the price around dinnertime(see aforementioned methods of MonSter retaliation!) And tonight we are meeting some of our favorite people for pizza & trivia which I plan on enjoying, so Naptime it is. I hate Naptime. There are at least 35 things I would rather do, possibly more, but hopefully if I suck it up and sleep a while I can enjoy my evening with little interference from my body.
Until next time....
My trip to Cherry Hill was FABulous. Jennifer and I have been friends since we were little girls and she is so amazing. Seriously. She is. She and her rockin husband Vince have this gorgeous house and 2 incredible daughters and they are just really awesome parents. Seriously. I am in awe of watching them with these girls...it boggles my mind. Lola will be 4 this summer and oh boy, she is strong-willed and brilliant and talented and funny and so sweet. I know I am biased being her Aunt and all, but Seriously. She let me read her a bedtime story and tuck her in one night and it goes like this,
"Good night Lola,"
"Good night Aunt Caroline. Love you,"
"Love you too, Lola,"
"Aunt Caroline? Can I please have Bumblebee cereal in the morning?" (aka Cheerios)
"Yes Lola, you can have Bumblebee cereal,"
"Thank you Aunt Caroline. I love you. Good night,"
And she's asleep. No fuss, no "Can I have water? I need to go to the bathroom? Can I have one more story?" Sure, she has her moments (don't we all?) but I totally adore this child. And her new sister Lucy is 4 months and cooing and smiling (ok and vomiting lots, but she can't help she has bad reflux!) She welcomed me to Cherry Hill by puking not just on my shirt, but completely Down my shirt. Ahhh, the joys of babies. But other than that she is just plain adorable and I snuggled and held her until my arms were sore but I just couldn't put her down!
The only downside to my trip was the part where I had to say goodbye. Good friends like the Frankowski's are pretty special.
Upon my return from NJ, our friends Steven & Tiffany stayed with us while some work was being done on their house. It was actually really fun! Sort of like playing College Dorm except we didn't all have to share one bathroom! hah I am trying to become a better cook, so I practiced a meal on them and it wasn't terrible. I have zero confidence when it comes to my cooking. I am working on it though and as I make more things that aren't terrible, I feel better about my skills in the kitchen.
The day after they went back home, Chris & I left and spent a long weekend in Savannah. It was relaxing and fun and just what we needed. So now we're back to normal life. We bought a new TV- some fancy enormous flatscreen HD thing - so we are trying to figure out where to put it which will inevitably involve rearranging our living room. Anyone wanna come help move furniture around? ;-)
As for health stuff my body is trying new tricks to piss me off. When I try and do too much or don't get enough sleep or
I have decided that Everything in life is a balancing act. We are all juggling 50 million things. We work hard to make money to provide for our families...but then we are working so much we don't see our families. Or we eat too many cookies this week but then don't go exercise at all because there are too many other things to do. Or we don't get enough sleep and pay for it the next day. Or we take an extra Baclofen and Lyrica so that we aren't in pain but then we either can't stay awake or if we can, we are so loopy it takes us 20 minutes to comprehend a joke on The Daily Show! Finding the perfect balance with anything is a real struggle sometimes.
I don't have any answers yet, but I keep plugging along. Some days are better than others. Some days are god-awful and others are simply fabulous. But that's true for all of us, chronic disease or not.
Other things to report, sadly, according to my specialist eye dr, my vision is getting worse (has gotten worse? whats the correct grammer here??) Whatever. It didn't get better and it didn't stay the same and still only speculation as to why. Brain stem damage? perhaps. My body freaked out when the MS invaded it causing the eye muscle to go kaput? maybe. A second neuro-muscular disease? Unlikely, but still on the table. At some point Why doesn't matter and you just have to say, "Ok fine. So where do we go from here?" (BtVS fans...you know you wanna sing the song) So my Dr prescribed a stronger version of magical glasses to see if they will do anything to help, come back in 3 months and we will see if its better/worse/same. I treated myself to cool, funky new eyeglass frames. If I can't see, I should at least look good, right?
So it is about time to pay my daily respects at the Altar of the MS Gods....or as some people might call it, Take A Nap. I find that if I skip said nap I usually pay the price around dinnertime(see aforementioned methods of MonSter retaliation!) And tonight we are meeting some of our favorite people for pizza & trivia which I plan on enjoying, so Naptime it is. I hate Naptime. There are at least 35 things I would rather do, possibly more, but hopefully if I suck it up and sleep a while I can enjoy my evening with little interference from my body.
Until next time....
Monday, February 4, 2008
Out of town
I am headed out of town tomorrow to visit my childhood best friend, Jennifer and her family. I am so happy to get to see Jenn, Vince, their daughter Lola and meet their newest daughter, Lucy who is almost 4 months old. SO excited!
May try and write some while I am up there about several things floating around in my lesioned-covered brain...but if not will write when I return.
Have a happy week everyone,
XOXO
Caroline
May try and write some while I am up there about several things floating around in my lesioned-covered brain...but if not will write when I return.
Have a happy week everyone,
XOXO
Caroline
Monday, January 28, 2008
The Show Must Go On
Take an 8 minute break out of your day and watch this video:
http://www.youtube.com/watch?v=6oraM8IF2Gc
http://www.youtube.com/watch?v=6oraM8IF2Gc
Kristie's video was filmed in Atlanta (you may recognize several of the venues!) and was a finalist at the MS Film Festival.
Love the "MS Costume" she lets people try on...very creative.
Enjoy!
Wednesday, January 16, 2008
Functioning
Functioning: performing or able to perform its regular function
Our new year began with a broken fridge and broken tv within 24 hours of one another....the joys of homeownership! haha
So for a fridge to be "functioning" that means it is working properly and keeping your food cold, right? And a tv has to work and show you all your favorite shows in order for it to be "functioning", right?
Similar things could be said for people's bodies and our respective parts: a kidney is either "functioning" or not, same goes for livers and hearts and numerous other things that keep our bodies "functioning" as they should.
The word can also be used with people. I have often used the phrase "a functioning member of society" to describe people...often my former students at Pace as they grow up, graduate and then join the world that exists after high school and college. By my own standards I have been a functioning member of society since I was 19. I worked and supported myself financially at jobs I cared about and at some that I didn't, but I was out there making it work and adding my 2 cents to wherever I was.
I think a lot of people's self-worth is drastically tied up in what they do for a living and how much money the make doing it. I know mine used to be. You feel good about yourself when you work at a job and you are good at it and you make a good salary. There's nothing wrong with that; however, it very quickly can become the Only thing you see as valuable about yourself - this ability to earn lots of money - to be a productive and "functioning" member of society.
What if you are a housewife or a stay-at-home-mom/dad? Does the fact you don't have a salary and benefits mean you are no longer "functioning"? That seems silly. My Mom stayed home with me and my brother for over 14 years and she did a heck of a lot of functioning!
Whether you spend your time making and keeping a home, raising children, volunteering, raising money for worthy causes, making new friends, learning new things, traveling....aren't all these things ways of "functioning"?
Not exactly, according to dictionary.com...if in fact you used to be able to perform certain regular functions and now you no longer are able to perform those regular functions...or even if you choose not to perform those regular functions...well, it implies you just aren't "functioning!"
Pardon my language on this one, but to that I say, "Bullshit, Matthew, Bullshit!" (It's a Kulinski thing...)
Any definition that implies the hundreds of thousands of housewifes and stay-at-home-parents aren't "functioning" because they chose to work out of their home - I say that's just BS. And frankly, same goes for those of us that deal with disabilities, chronic illnesses and well, Life.
Life sometimes makes it difficult to function as we used to - we get sick, we get stressed, we get depressed, we get pregnant and skinny and fat and old and millions of other things - and we don't FUNCTION the same way that we used to. But we are still lovely, interesting, attractive, funny and productive members of society.
And who wants to "function" anyway? What a robotic word.
I would much rather LIVE.
Our new year began with a broken fridge and broken tv within 24 hours of one another....the joys of homeownership! haha
So for a fridge to be "functioning" that means it is working properly and keeping your food cold, right? And a tv has to work and show you all your favorite shows in order for it to be "functioning", right?
Similar things could be said for people's bodies and our respective parts: a kidney is either "functioning" or not, same goes for livers and hearts and numerous other things that keep our bodies "functioning" as they should.
The word can also be used with people. I have often used the phrase "a functioning member of society" to describe people...often my former students at Pace as they grow up, graduate and then join the world that exists after high school and college. By my own standards I have been a functioning member of society since I was 19. I worked and supported myself financially at jobs I cared about and at some that I didn't, but I was out there making it work and adding my 2 cents to wherever I was.
I think a lot of people's self-worth is drastically tied up in what they do for a living and how much money the make doing it. I know mine used to be. You feel good about yourself when you work at a job and you are good at it and you make a good salary. There's nothing wrong with that; however, it very quickly can become the Only thing you see as valuable about yourself - this ability to earn lots of money - to be a productive and "functioning" member of society.
What if you are a housewife or a stay-at-home-mom/dad? Does the fact you don't have a salary and benefits mean you are no longer "functioning"? That seems silly. My Mom stayed home with me and my brother for over 14 years and she did a heck of a lot of functioning!
Whether you spend your time making and keeping a home, raising children, volunteering, raising money for worthy causes, making new friends, learning new things, traveling....aren't all these things ways of "functioning"?
Not exactly, according to dictionary.com...if in fact you used to be able to perform certain regular functions and now you no longer are able to perform those regular functions...or even if you choose not to perform those regular functions...well, it implies you just aren't "functioning!"
Pardon my language on this one, but to that I say, "Bullshit, Matthew, Bullshit!" (It's a Kulinski thing...)
Any definition that implies the hundreds of thousands of housewifes and stay-at-home-parents aren't "functioning" because they chose to work out of their home - I say that's just BS. And frankly, same goes for those of us that deal with disabilities, chronic illnesses and well, Life.
Life sometimes makes it difficult to function as we used to - we get sick, we get stressed, we get depressed, we get pregnant and skinny and fat and old and millions of other things - and we don't FUNCTION the same way that we used to. But we are still lovely, interesting, attractive, funny and productive members of society.
And who wants to "function" anyway? What a robotic word.
I would much rather LIVE.
Wednesday, January 2, 2008
Happy New Year!
Our new year started off with a very exciting party for Chris, as he turned 30 on January 1st! His parents hosted a New Years Eve/birthday party in their newly renovated home and many out-of-town friends and family even flew in for the event. Barbara & Paul were the perfect hosts as always, and Betsey & Matthew helped with everything from invitations to playing bartender to ordering Chris' favorite petit fours! As my Mom and I always say, I truly won the "In-Law Lottery"- my Kulinski-Faga family is amazing and I am so lucky to have them in my lives. Grandpa Faga & Aunt Nina flew in, as well as Chris' newlywed Uncle Rob & Aunt Denise. Cousin Donna and her husband Michael came up from Florida to play chef/bartender mixing up delicious pomegranate margaritas, a chocolate fountain, bacon wrapped dates, homemade cannolis and much more. Our dear friend Kempton stayed 4 extra days in Atlanta so he could attend the party before flying home...and our friends Dominic & Alexis (who recently got engaged!!) flew down just to be here for the party and spend Chris' bday with him. You know you have true friends when they fly down for 29 hours just to help you celebrate turning 30!
The next morning we had a birthday brunch at our new house...and by "had" a brunch I mean to say "Our friends Tiffany and Karen cooked and baked their hearts out and then came over with all this delicious food and we only had to roll out of bed and walk downstairs!"
Geez, we have awesome friends.
So we would like to wish all our dear family & friends a Healthy Happy 2008.
May it be one of the best years yet!
Our love,
Caroline & Chris
Friday, December 28, 2007
Resolutions
According to the medical minds of today, there are four types of multiple sclerosis. I am blessed to have the "Relapsing-Remitting" type. I have periods where my health and symptoms stay more or less the same, and I have periods where new symptoms may appear and/or old ones may worse and/or more damage to the CNS (central nervous system) may or may not be done. Sounds pretty uncertain and unpredictable, doesn't it?
So how do you know if you are having a "relapse" or as some prefer, an "exacerbation"? The general rule of thumb is if you have a new symptom (or worsening of old one) that lasts more than 48 hours, call your neurologist. That still doesn't mean anything...for certain (here we are, back to the color gray!!!) but it means it is worth taking a closer look.
So by Thursday (2 days after Xmas) when both feet have been numb, I am having new weakness in my hands and legs, the chest tightening is worse, my balance is waaay off and I am having dizzy spells (while stone cold sober!) for over 48 hours...I call the doctor. Turns out that if your body has recently fought off an infection or virus, MS gets really pissed off and acts like a rebellious teenager. The nurse was not surprised to learn I had a nasty chest cold less than 2 weeks ago and was now experiencing some trippy new/old symptoms. I am on watch until Monday. If things worsen or have not improved by then we will consider magic wonder-drugs to kick MS back into gear.
To further infuriate me, last night at 10pm and then AGAIN an hour ago the old right foot decides to mess with my head (or is it more accurately, my head messing with my foot? hmmm) I actually made Chris take my sock off so I could see for myself that my foot was not covered in fiery thumbtacks. I hoped that the visual would ease the pain. It did not. A double dose of anti-convulsants used for neuropathic pain did help.
So I sit here on Night Two of Burning Foot, still off-balance, dizzy spells abundant, still dropping things unless I really concentrate and use both hands and I wonder IS this a relapse? My MRI was so clean! I can't be getting worse already? It is too soon. My brain was so pretty on the scan. I wish my skull had a zipper and I could peek in and have a quick look...though, really what good would that do me? If I am getting worse then I am getting worse. I can't stop it. I can try my damndest to slow it down, but I can't stop it.
I can only do the best I can do today. And I really need to start recognizing my own limitations a little better. ONE major event per day is all I can do now. If tomorrow is my dear friend's birthday and I plan on being at her dinner party, then I can't go to Lenox on a shopping spree all day. Old Caroline could, perhaps, but my New Year's resolution needs to be letting her go and accepting that I am not Superwoman and this newly brain-lesioned body cannot do all the things I want it to do. And it really stinks and I hate it; but I also want to enjoy the things I DO get to do, which is still alot of amazing things with some pretty extraordinary people. So I have to take care of this immune-suppressed-jacked-up body of mine and be nicer to it and stop trying to make it something it is not. It reminds me all of a quote from Richard M. Cohen's book, who also has MS:
"We all need to appreciate ourselves for what we are and stop whining about what we are not. I grow weary of wishing so desperately for something else. Those concerns find no resolution. All I can do is what I can do. There are no cures out there, and there can be no illusions of health getting better. I do dream of living something better. There is peace of mind out there somewhere. That calm may take years to find, but its promise carries me beyond regions I otherwise would visit. To dream is to fly. Dreaming is rising above pain, believing that life will be better, no matter what the physician decrees."
And with that note I will make myself some herbal tea, perhaps draw a nice, not-too-hot bubble bath, listen to a favorite CD and be nice to my body in hopes it will return the favor tomorrow so that I may enjoy time with my friends.
However damaged and rebellious it may be, it is the only body I have. I need to appreciate it for the many things it allows me to do and try harder not to focus on its limitations.
Saturday, December 8, 2007
Try To Remember...
Losing control over my body and it functioning "normally" does not really scare me. Sure, I wish I didn't have brain lesions and an unpredictable, degenerative disease. I get angry. I get sad. I grieve the loss of my health. But the thought of not being able to walk without some type of mobility assistance does not scare me. My vision never being normal and/or getting worse does not scare me. Any of the things that could potentially happen to my body - none of these scare me. They would make me very angry and very sad, but I can honestly say I am not afraid.
Stress, fatugue, aging...all these things can affect our bodies and our minds. Who hasn't lost their keys? Or completely forgot someone's name? How many times have we all said, "I think I am losing my mind!" as an expression of frustration. Haven't we all called something a "thingy" or a "whatchamacallit" because we simply could not remember the item's name?
It is well known that stress and fatigue exacerbate symptoms (even if you don't have MS) and I have gotten used to my legs being more tired or my eyes not working as well during times of high stress/fatigue. But in the past 10 days I have had more "cognitive issues" than ever before.
And it scares me.
At what point does an MSer realize and admit they are really having problems, cognitively speaking? When they lose their keys...for over 4 days? When they have no recollection of a particular conversation with someone? When they completely forget an important meeting? Or their social security number? When they all of a sudden can't remember the words to one of their favorite songs?
For someone who is a natural blonde and enjoys self-deprecating humor, it is easy to just laugh it off. Meanwhile, underneath my wicked & witty sense of humor these little moments terrify me. Not in and of themselves, but for what they might be foreshadowing...
If I end up using a cane or even a wheelchair...I am still me.
If I lose my vision, partially or completely...I am still me.
If one or both of my hands no longer work...I am still me.
If I need to take naps during the day...I am still me.
If I sometimes walk around looking like a drunk person because I am dizzy and my balance is off...I am still me.
But what happens if I forget people's names and birthdays, or can't think fast enough to read all the notes on a sheet of music, or get easily confused by simple instructions, or lose my stellar sense of humor because I can no longer think on my feet fast enough to dish out amazing one-liners and comebacks? Am I really still me if my mind doesn't work like it used to? Will I still be funny and interesting to be around?
I finally found my keys and eventually remembered my social security number (after a good night's sleep!) My husband kindly re-walked me through the conversation I had forgotten. Nevertheless, these things bother me, perhaps more than I want to admit even to myself.
But what is there to do? I take my extra vitamins prescribed by my neurologist, I do crossword puzzles, I try and stay active mentally and physically, I do my injections on the Wonder-Drug and I stay the course.
Above all I try and keep my sense of humor.
Because sometimes laughter truly is the best medicine.
Stress, fatugue, aging...all these things can affect our bodies and our minds. Who hasn't lost their keys? Or completely forgot someone's name? How many times have we all said, "I think I am losing my mind!" as an expression of frustration. Haven't we all called something a "thingy" or a "whatchamacallit" because we simply could not remember the item's name?
It is well known that stress and fatigue exacerbate symptoms (even if you don't have MS) and I have gotten used to my legs being more tired or my eyes not working as well during times of high stress/fatigue. But in the past 10 days I have had more "cognitive issues" than ever before.
And it scares me.
At what point does an MSer realize and admit they are really having problems, cognitively speaking? When they lose their keys...for over 4 days? When they have no recollection of a particular conversation with someone? When they completely forget an important meeting? Or their social security number? When they all of a sudden can't remember the words to one of their favorite songs?
For someone who is a natural blonde and enjoys self-deprecating humor, it is easy to just laugh it off. Meanwhile, underneath my wicked & witty sense of humor these little moments terrify me. Not in and of themselves, but for what they might be foreshadowing...
If I end up using a cane or even a wheelchair...I am still me.
If I lose my vision, partially or completely...I am still me.
If one or both of my hands no longer work...I am still me.
If I need to take naps during the day...I am still me.
If I sometimes walk around looking like a drunk person because I am dizzy and my balance is off...I am still me.
But what happens if I forget people's names and birthdays, or can't think fast enough to read all the notes on a sheet of music, or get easily confused by simple instructions, or lose my stellar sense of humor because I can no longer think on my feet fast enough to dish out amazing one-liners and comebacks? Am I really still me if my mind doesn't work like it used to? Will I still be funny and interesting to be around?
I finally found my keys and eventually remembered my social security number (after a good night's sleep!) My husband kindly re-walked me through the conversation I had forgotten. Nevertheless, these things bother me, perhaps more than I want to admit even to myself.
But what is there to do? I take my extra vitamins prescribed by my neurologist, I do crossword puzzles, I try and stay active mentally and physically, I do my injections on the Wonder-Drug and I stay the course.
Above all I try and keep my sense of humor.
Because sometimes laughter truly is the best medicine.
Sunday, December 2, 2007
Shades of gray
I love the colors black & white. I love their simplicity.
There isn't any question with black & white. No one says, "Hmmm, is that color blue or is it green? Maybe its aqua? Or teal? Blue-green? Green-blue?"
Black & white are easily recognizable.
Gray...now gray is an entirely different story.
While gray is a product of these two simple colors, gray is not simple. It brings up many questions and it isn't always easy to recognize.
People ask me all the time how I am doing, how I am feeling. It is wonderful to have so many people that care enough to ask and at the same time I feel guilty when I answer with some variation on, "Could be better, could be worse." I want to be able to tell them I am all better, that my vision is back 100% and I see things exactly like I used to, that my legs never give out on me, that my hands work just as they always have, that I never feel any pain and I don't ever get dizzy.
I want it to be black & white.
But MS is more gray than I ever imagined it would be and it frustrates the hell out of me.
Learning to live with gray is a slow process that I have not yet mastered. It takes patience. It takes time and a lot of perseverance. It takes acceptance.
My vision is gray and may be for a long time. It is not back to normal and I compensate in a hundred ways on a daily basis and I get by. I (usually) see better in the mornings but not always. My "magical" glasses help me see to drive most of the time, but often even they don't do the trick so I put them away and try again later.
Gray can be ambiguous and depressing, frustrating and dreary. It gives more questions than answers and at times it seems to spread so rapidly, taking over everything like a fog rolling in.
In those times the only cure is putting on some fabulous red shoes.
Red beats out gray any day of the week.
Red dances and stomps on gray's face.
Red is powerful.
Red is full of heart.
Red never gives up and seldom fades.
I love the colors black & white.
Though I like them best with a healthy splash of red.
There isn't any question with black & white. No one says, "Hmmm, is that color blue or is it green? Maybe its aqua? Or teal? Blue-green? Green-blue?"
Black & white are easily recognizable.
Gray...now gray is an entirely different story.
While gray is a product of these two simple colors, gray is not simple. It brings up many questions and it isn't always easy to recognize.
People ask me all the time how I am doing, how I am feeling. It is wonderful to have so many people that care enough to ask and at the same time I feel guilty when I answer with some variation on, "Could be better, could be worse." I want to be able to tell them I am all better, that my vision is back 100% and I see things exactly like I used to, that my legs never give out on me, that my hands work just as they always have, that I never feel any pain and I don't ever get dizzy.
I want it to be black & white.
But MS is more gray than I ever imagined it would be and it frustrates the hell out of me.
Learning to live with gray is a slow process that I have not yet mastered. It takes patience. It takes time and a lot of perseverance. It takes acceptance.
My vision is gray and may be for a long time. It is not back to normal and I compensate in a hundred ways on a daily basis and I get by. I (usually) see better in the mornings but not always. My "magical" glasses help me see to drive most of the time, but often even they don't do the trick so I put them away and try again later.
Gray can be ambiguous and depressing, frustrating and dreary. It gives more questions than answers and at times it seems to spread so rapidly, taking over everything like a fog rolling in.
In those times the only cure is putting on some fabulous red shoes.
Red beats out gray any day of the week.
Red dances and stomps on gray's face.
Red is powerful.
Red is full of heart.
Red never gives up and seldom fades.
I love the colors black & white.
Though I like them best with a healthy splash of red.
Monday, November 19, 2007
Home Sweet Home
Hello from our new home!!!
We are moved in, have internet, cable, one bed with linens on it and some semblance of a functioning kitchen...Hooray!
Moving is hard work. I find myself more exhausted than I can remember being in a long time. Not only is moving just plain tiring, but Every darn medicine I am on causes extreme drowsiness and/or fatigue, not to mention the fatigue that MS causes all by its lonesome.
It is a real balancing act trying to figure out what works and what doesn't.
I have stopped taking my AM dose of Lyrica (the drug that helps with neuropathic pain) in hopes of getting some AM energy back. The price I pay however, is a few more sensory problems than usual, i.e. my legs vibrating, the feeling of bugs crawling on my calves and ankles and the occasional short-lived burning in my feet and hands. So far, the pros outweigh the cons, though I swear my husband thinks I am nuts when I freak out and yell (for the umpteenth time),
"Honey! A bug is crawling on me! Come kill it!"
He just stares at me and waits patiently for me to look down at my own leg and see there is, in fact, No Bug anywhere on or near me.
Poor Chris...married to such a bug-fearing lunatic. I am not scared of much, but bugs have always given me the heebie-jeebies!
It is just too infuriating to have this amazing new house and unpacked boxes staring me in the face and no energy with which to do ANYthing. So I settle for some buzzing/burning/creepy-crawly legs for a while. We all have to make sacrifices!
That's all I got for now, mostly because I can't really see what I am typing...I think my eyes are trying to tell me to Go To Bed! And if I have learned anything over the past 6 months it is the importance of listening to one's body. Because if you ignore what it is trying to tell you, it WILL eventually catch up with you and you will have to pay the piper.
More soon though....
XOXO
We are moved in, have internet, cable, one bed with linens on it and some semblance of a functioning kitchen...Hooray!
Moving is hard work. I find myself more exhausted than I can remember being in a long time. Not only is moving just plain tiring, but Every darn medicine I am on causes extreme drowsiness and/or fatigue, not to mention the fatigue that MS causes all by its lonesome.
It is a real balancing act trying to figure out what works and what doesn't.
I have stopped taking my AM dose of Lyrica (the drug that helps with neuropathic pain) in hopes of getting some AM energy back. The price I pay however, is a few more sensory problems than usual, i.e. my legs vibrating, the feeling of bugs crawling on my calves and ankles and the occasional short-lived burning in my feet and hands. So far, the pros outweigh the cons, though I swear my husband thinks I am nuts when I freak out and yell (for the umpteenth time),
"Honey! A bug is crawling on me! Come kill it!"
He just stares at me and waits patiently for me to look down at my own leg and see there is, in fact, No Bug anywhere on or near me.
Poor Chris...married to such a bug-fearing lunatic. I am not scared of much, but bugs have always given me the heebie-jeebies!
It is just too infuriating to have this amazing new house and unpacked boxes staring me in the face and no energy with which to do ANYthing. So I settle for some buzzing/burning/creepy-crawly legs for a while. We all have to make sacrifices!
That's all I got for now, mostly because I can't really see what I am typing...I think my eyes are trying to tell me to Go To Bed! And if I have learned anything over the past 6 months it is the importance of listening to one's body. Because if you ignore what it is trying to tell you, it WILL eventually catch up with you and you will have to pay the piper.
More soon though....
XOXO
Monday, November 5, 2007
We're Moving!
This will be short, as Chris is literally about to take the computer away from me so he can pack it up! hah! We are officially homeowners and have just closed on our first home. We are really excited and the movers come tomorrow! Yippee!
Sadly, I do not yet know when our internet will be up and working at the new abode, so it could be a while until I blog again. Hopefully not too long.
In a quick update...my Dad who Rocks is having me send all my medical records to a doctor up at the Mayo Clinic to get his take on my bizarre medical history. It will be interesting to see what he thinks about A) The ever-present, ever-lingering double vision, and B) The Chest CT/shortness of breath stuff. It has to all be connected somehow...it is just a big Caroline-shaped puzzle I guess.
Off to pack! See you on the flip side....
XOXO
Sadly, I do not yet know when our internet will be up and working at the new abode, so it could be a while until I blog again. Hopefully not too long.
In a quick update...my Dad who Rocks is having me send all my medical records to a doctor up at the Mayo Clinic to get his take on my bizarre medical history. It will be interesting to see what he thinks about A) The ever-present, ever-lingering double vision, and B) The Chest CT/shortness of breath stuff. It has to all be connected somehow...it is just a big Caroline-shaped puzzle I guess.
Off to pack! See you on the flip side....
XOXO
Sunday, October 28, 2007
Wednesday, October 24, 2007
The things that can happen in a week...
- I had a CT scan of my chest/lungs
- My best friend from childhood had a healthy baby girl (Lucy Claire, 6lbs6oz)
- Chris and I went under contract on our first home
- I tagged along with my Dad to visit my grandparents in Macon
- We had our first ever home inspection
- I got the inconclusive results of aforementioned CT scan
I am so excited about meeting Lucy I can hardly stand it. It stinks when your closest friends live far away and you can't be among the first to meet their babies. But I am planning on visiting them in December. Yippee!!!
Chris and I are also very excited about becoming homeowners. It is so cute, so perfect for us, and the inspection went fairly well. There are some issues, but hopefully we can come to an agreement on everything with the sellers.
As for the CT scan, according to my Pulmonologist, there is some "density" in the area of my thymus. At first I thought he said thyroid. But no, thyROID and thyMUS are 2 entirely different things apparently. The thymus is an organ located in the upper part of the chest cavity just behind the sternum and it stimulates the production of infection-fighting cells, notably T cells.
Wait...T cells! That's familiar. I have heard of those before!
I confirmed my suspicions with my good friend Wikipedia:
"According to most researchers, a special subset of lymphocytes, called T cells, plays a key role in the development of MS. These T cells recognize myelin (your brain's protective coating) as foreign and attack it as if it were an invading virus, which triggers the inflammatory process."
2. It is signs of thymoma, a fancy way of saying a tumor of the thymus, most often related to automimmune diseases such as Myasthenia Gravis, in which case most thymomas are benign.
3. Something involving the words lymph and oma. :-(
Inconclusive. This "blip" on my CT scan could be absolutely nothing...or it could be a teeny tiny benign tumor...or it could be a non-benign tumor, but since none of my doctors seemed to eager to crack open my chest cavity right away, I think that is a good sign. If they were really worried about it, they would have encouraged more aggressive actions.
So now I wait. There really isn't much else to do. My breathing hasn't gotten worse. In fact, I think it has gotten better (unless I get overheated, overfatigued or overstressed then there might as well be an elephant sitting on my chest!) So we watch and wait, keep track of my symptoms and do a repeat CT in 6 months.
Meanwhile, I have bigger fish to fry...I have a new niece to send presents to, I have flights to book to NJ, I have trick-or-treating with some UGA cheerleaders (and a football player!), I have a house to buy, I have furniture to pick out and rooms to decorate, I have stage makeup to design, I have a million things to be excited and happy about and worrying about whether or not there is a teeny tiny tumor in my thymus just isn't on the list today.
But, ya know, if anyone happens to have a couple of Xanax lying around or anything...I probably wouldn't turn them down...
XOXOXOXO
- My best friend from childhood had a healthy baby girl (Lucy Claire, 6lbs6oz)
- Chris and I went under contract on our first home
- I tagged along with my Dad to visit my grandparents in Macon
- We had our first ever home inspection
- I got the inconclusive results of aforementioned CT scan
I am so excited about meeting Lucy I can hardly stand it. It stinks when your closest friends live far away and you can't be among the first to meet their babies. But I am planning on visiting them in December. Yippee!!!
Chris and I are also very excited about becoming homeowners. It is so cute, so perfect for us, and the inspection went fairly well. There are some issues, but hopefully we can come to an agreement on everything with the sellers.
As for the CT scan, according to my Pulmonologist, there is some "density" in the area of my thymus. At first I thought he said thyroid. But no, thyROID and thyMUS are 2 entirely different things apparently. The thymus is an organ located in the upper part of the chest cavity just behind the sternum and it stimulates the production of infection-fighting cells, notably T cells.
Wait...T cells! That's familiar. I have heard of those before!
I confirmed my suspicions with my good friend Wikipedia:
"According to most researchers, a special subset of lymphocytes, called T cells, plays a key role in the development of MS. These T cells recognize myelin (your brain's protective coating) as foreign and attack it as if it were an invading virus, which triggers the inflammatory process."
One of these days some researcher is going to discover that all these autoimmune things are somehow related and cure them all in one swoop! How cool will that be?
So back to the word "density" which is what is showing on my CT scan where my non-dense thymus should be. According to my ewver-growing team of doctors, it is one of the following:
1. The density is biological in origin, i.e. my thymus has always looked like that and we just never knew until we scanned it.2. It is signs of thymoma, a fancy way of saying a tumor of the thymus, most often related to automimmune diseases such as Myasthenia Gravis, in which case most thymomas are benign.
3. Something involving the words lymph and oma. :-(
Inconclusive. This "blip" on my CT scan could be absolutely nothing...or it could be a teeny tiny benign tumor...or it could be a non-benign tumor, but since none of my doctors seemed to eager to crack open my chest cavity right away, I think that is a good sign. If they were really worried about it, they would have encouraged more aggressive actions.
So now I wait. There really isn't much else to do. My breathing hasn't gotten worse. In fact, I think it has gotten better (unless I get overheated, overfatigued or overstressed then there might as well be an elephant sitting on my chest!) So we watch and wait, keep track of my symptoms and do a repeat CT in 6 months.
Meanwhile, I have bigger fish to fry...I have a new niece to send presents to, I have flights to book to NJ, I have trick-or-treating with some UGA cheerleaders (and a football player!), I have a house to buy, I have furniture to pick out and rooms to decorate, I have stage makeup to design, I have a million things to be excited and happy about and worrying about whether or not there is a teeny tiny tumor in my thymus just isn't on the list today.
But, ya know, if anyone happens to have a couple of Xanax lying around or anything...I probably wouldn't turn them down...
XOXOXOXO
Friday, October 12, 2007
Time to Make the Doughnuts...
When I was little the question arose,
"I know that Daddy's job is to be a doctor and help people. But what is your job, Mommy?"
"My main job is to raise you and your brother and to teach you how to become adults so that one day you can have your own lives and your own jobs," my Mom replied.
"But Mommy, what is my job now?" I asked.
"Your job right now is to go to school. You need to learn all you can and pay attention and do what the teachers tell you. That is your job." I remember that conversation as if it were yesterday and feeling so secure in knowing what my job was and what was expected of me.
Fast forward to December 1999, when after 2.5 years of college I had to leave CCM (the topic of another conversation someday). My "job" as a student ended and from age 19 on, I supported myself. I worked in retail, I worked in medical offices, I taught kids to sing and dance, I managed properties, I trained people on how to do their jobs, I worked in an I.T. department...and the list goes on.
Fast forward to April 2007 when I had to leave my job, reeling from the effects of this new uninvited guest in my life. Thinking it would take a few weeks, maybe a month or two to feel better and get back to work, I waited. And waited. And more problems arose. And there has been pain, dizziness, mind-numbing fatigue, shortness of breath and still no real improvement in my initial vision loss. And in between doctor appointments and tests, in between symptoms that knock me right on my butt, in between visiting with friends when I feel up to it, I look at my life and I desperately want to ask,
"But Mommy, what is my job now?"
I suppose my job now is to feel better. My job is to learn to manage the effects and symptoms of this disease to the absolute best of my ability. My job is to make the annoying phone calls to doctors, nurses, labs, and insurance companies. My job is to ask "What else can we try?" and to say "This medicine isn't working" and "I need some answers" and so forth and so on. My job is to adjust to this new body that doesn't do what I tell it to do all the time and often does things that make no sense at all. My job is to keep my sense of humor and try to have some fun whenever possible.
It is a not a well-paying job and frankly, the benefits stink. It is a job that often makes me feel insignificant. I don't go in to an office every day. Heck, on the bad days I don't even shower or get out of my pajamas. And the hours of this job are just god-awful! I get ZERO vacation days! I don't even have cute business cards. But you know, this job is very important and if I do it well, I will be able to do other jobs again soon. More importantly, I know that this job will lead to a higher percentage of Good Days, happiness, sanity, maybe even inner peace or something.
So it's back to work for me, which today will involve: going to lay down on the floor for a while which is where I currently can breathe the best, returning a call to a doctor, paying a doctor's bill, cleaning up the apt a bit and then later on doing my injection of the Wonder-Drug. I might even shower somewhere in there (which I am sure my husband would appreciate).
It isn't my dream job, but sometimes you gotta work your way up the ladder. :-)
"I know that Daddy's job is to be a doctor and help people. But what is your job, Mommy?"
"My main job is to raise you and your brother and to teach you how to become adults so that one day you can have your own lives and your own jobs," my Mom replied.
"But Mommy, what is my job now?" I asked.
"Your job right now is to go to school. You need to learn all you can and pay attention and do what the teachers tell you. That is your job." I remember that conversation as if it were yesterday and feeling so secure in knowing what my job was and what was expected of me.
Fast forward to December 1999, when after 2.5 years of college I had to leave CCM (the topic of another conversation someday). My "job" as a student ended and from age 19 on, I supported myself. I worked in retail, I worked in medical offices, I taught kids to sing and dance, I managed properties, I trained people on how to do their jobs, I worked in an I.T. department...and the list goes on.
Fast forward to April 2007 when I had to leave my job, reeling from the effects of this new uninvited guest in my life. Thinking it would take a few weeks, maybe a month or two to feel better and get back to work, I waited. And waited. And more problems arose. And there has been pain, dizziness, mind-numbing fatigue, shortness of breath and still no real improvement in my initial vision loss. And in between doctor appointments and tests, in between symptoms that knock me right on my butt, in between visiting with friends when I feel up to it, I look at my life and I desperately want to ask,
"But Mommy, what is my job now?"
I suppose my job now is to feel better. My job is to learn to manage the effects and symptoms of this disease to the absolute best of my ability. My job is to make the annoying phone calls to doctors, nurses, labs, and insurance companies. My job is to ask "What else can we try?" and to say "This medicine isn't working" and "I need some answers" and so forth and so on. My job is to adjust to this new body that doesn't do what I tell it to do all the time and often does things that make no sense at all. My job is to keep my sense of humor and try to have some fun whenever possible.
It is a not a well-paying job and frankly, the benefits stink. It is a job that often makes me feel insignificant. I don't go in to an office every day. Heck, on the bad days I don't even shower or get out of my pajamas. And the hours of this job are just god-awful! I get ZERO vacation days! I don't even have cute business cards. But you know, this job is very important and if I do it well, I will be able to do other jobs again soon. More importantly, I know that this job will lead to a higher percentage of Good Days, happiness, sanity, maybe even inner peace or something.
So it's back to work for me, which today will involve: going to lay down on the floor for a while which is where I currently can breathe the best, returning a call to a doctor, paying a doctor's bill, cleaning up the apt a bit and then later on doing my injection of the Wonder-Drug. I might even shower somewhere in there (which I am sure my husband would appreciate).
It isn't my dream job, but sometimes you gotta work your way up the ladder. :-)
Thursday, October 4, 2007
Dear God, It's Me, MS Girl
I suppose everyone has a breaking point when it comes to pain. I have several friends who have endured headaches so bad they actually vomit from the sheer pain. My brother broke his collarbone, which is thought to be one of the most painful bones you can break. And while I know nothing firsthand of childbirth I am assured by many that it is no walk in the park either. And yet I have a friend who endured gallstones as if it were nothing more than a stubbed toe, but she cannot stand to be nauseous or worse, vomit. Everyone has their own specific breaking point when it comes to physical pain or discomfort.
Last year during my first (hopefully last) root canal, it was thoroughly unpleasant, though never once did I feel defeated by it. Just glad when it was over! Really the same goes for the spinal tap, while quite painful, not unbearable. Even leaking spinal fluid and getting the raging "spinal headaches" = extremely unpleasant, but still do-able. Then MS played the "Let's make Caroline's legs feel on fire" game and there were moments I would cry and be really whiny and pathetic about it and my poor husband would keep switching out the icepacks, covering my legs with them in effort to trick my brain into thinking I was cold and not on fire. And it really was painful but luckily we found a medicine to keep it under control and no searing pain since.
Then 3+ weeks ago my little "boa constrictor" became some sort of mutant-giant-anaconda-freak-of-nature whose sole purpose in life is to try and squeeze the life out of me. And so for 3+ long weeks I have had a heck of a lot of trouble catching my breath. Quite literally. I have a new respect for asthmatics. How do people live like this? There are seconds, sometimes minutes where the pressure I feel on my chest is so intense I am 100% convinced I am taking my last breath. I was sitting at home the other day, struggling to get a nice normal breath and suddenly got very dizzy (I probably hyperventilated myself trying so damn hard to breath normally!!) I quickly layed flat on the floor, propping my feet on the couch, in hopes I wasnt about to pass out or something. Still feeling dizzy/queasy/hot/light-headed I am thinking:
"Oh Crap. Am I about to stop breathing or something? What is happening here? OH CRAP. I am home alone and if I cant breathe I can't dial 911 and I die alone in this apt with my bipolar cat who is certainly no Lassie! Ok, so if I can make it outside and pass out in the street of my apt complex there is more of a chance someone might see me and call for help. I should also probably grab that piece of paper in my wallet listing the 500 different meds I am on so some 22 year old ER doctor doesn't give me something that will actually kill me instead of fix me. Wait! Does 911 accept text messages?? If I can't breathe I could text them before I pass out, right?"
Yes, these are the thoughts that flew through my brain in the matter of about 5 seconds. And 5 seconds after that, I got in one good, deep breath and knew I wasn't going to die that day.
But seriously. I am 28 years old! Am I going to have to invest in one of those necklaces old women wear with the big red buttons??
"I've fallen! And I can't get up!"
This boa, this anaconda, whatever this is seems to have taken up permanent residence in the past week to 10 days and I gotta say, I may have reached my breaking point here.
Maybe it's because I trained as a singer for so many years. I mean it took me over a year just to learn HOW to breathe properly to support my singing voice! So not being able to ever feel as if I can catch my breath, the pain, discomfort, the dizziness, the fear of stopping breathing altogether...it has truly pushed me to the brink. Maybe its simply that breath is our lifeforce. It doesn't get any more basic than breathing, right? And feeling that basic need being threatened is really scary and horrible.
I had 2 consecutive hours today where breathing didn't feel like a chore and I didn't feel an elephant sitting somewhere on my chest. Sadly, 2 whole hours in a row was a record for me lately. This is ridiculous and its no way to live. Can't I cash in some other body part and trade it for this breathing thing?
(Watch as MS Girl trys to bargain with the MonSter):
"Look, my left arm- I hardly use it, don't really need it. I'm a rightie. I could get along without it. So make it numb or weak or whatever. Take it instead! Or my vision- seriously! I have gotten pretty used to not seeing so well, to pirate patches and all that. My left eye is pretty useless anyway. Do you wanna blind it out or something? I just need to be able to breathe and not worry once an hour that I am on the verge of my imminent death!"
(And here is where you know she is Really getting desperate):
"Look, just give me back the Fire Legs. Really. I can handle it. I bought 2 new ice packs, which means my freezer is stocked full. I can cover myself in ice and really, its not that bad. I mean ok, its Bad, but NOT AS BAD AS THIS STUPID INABILITY TO EVER CATCH MY BREATH!"
(MS Girl attempts to take a slow, deliberate breath to assemble her thoughts. Sadly she only manages to make herself dizzy and then has some sort of coughing fit where it seems she only choked on her own saliva or something equally stupid):
"You know you really aren't very smart to play your hand this way. We have a long life together my little MonSter friend, but if you wanna play your spades upfront, that's fine. I'm in it to win the war. And I have troops the likes of which you've never seen. And I am officially Done asking The Powers That Be for help in 'making this pain go away'. Oh no, Dear MonSter...I have wised up to your shenanigans and I know now better what to ask for..."
I just ask for strength. Just give me the strength I need to fight this new battle and I will never never never give up the war. I don't ask you to fix me, to cure me or to heal me. If you have the ability or inclination for that sort of thing, there are a lot of people who need it Far more than I do. Heal them, okay? I just need a little more strength to get through this one without losing my mind or my fabulous sense of humor, okay?
Okay then.
Amen.
Last year during my first (hopefully last) root canal, it was thoroughly unpleasant, though never once did I feel defeated by it. Just glad when it was over! Really the same goes for the spinal tap, while quite painful, not unbearable. Even leaking spinal fluid and getting the raging "spinal headaches" = extremely unpleasant, but still do-able. Then MS played the "Let's make Caroline's legs feel on fire" game and there were moments I would cry and be really whiny and pathetic about it and my poor husband would keep switching out the icepacks, covering my legs with them in effort to trick my brain into thinking I was cold and not on fire. And it really was painful but luckily we found a medicine to keep it under control and no searing pain since.
Then 3+ weeks ago my little "boa constrictor" became some sort of mutant-giant-anaconda-freak-of-nature whose sole purpose in life is to try and squeeze the life out of me. And so for 3+ long weeks I have had a heck of a lot of trouble catching my breath. Quite literally. I have a new respect for asthmatics. How do people live like this? There are seconds, sometimes minutes where the pressure I feel on my chest is so intense I am 100% convinced I am taking my last breath. I was sitting at home the other day, struggling to get a nice normal breath and suddenly got very dizzy (I probably hyperventilated myself trying so damn hard to breath normally!!) I quickly layed flat on the floor, propping my feet on the couch, in hopes I wasnt about to pass out or something. Still feeling dizzy/queasy/hot/light-headed I am thinking:
"Oh Crap. Am I about to stop breathing or something? What is happening here? OH CRAP. I am home alone and if I cant breathe I can't dial 911 and I die alone in this apt with my bipolar cat who is certainly no Lassie! Ok, so if I can make it outside and pass out in the street of my apt complex there is more of a chance someone might see me and call for help. I should also probably grab that piece of paper in my wallet listing the 500 different meds I am on so some 22 year old ER doctor doesn't give me something that will actually kill me instead of fix me. Wait! Does 911 accept text messages?? If I can't breathe I could text them before I pass out, right?"
Yes, these are the thoughts that flew through my brain in the matter of about 5 seconds. And 5 seconds after that, I got in one good, deep breath and knew I wasn't going to die that day.
But seriously. I am 28 years old! Am I going to have to invest in one of those necklaces old women wear with the big red buttons??
"I've fallen! And I can't get up!"
This boa, this anaconda, whatever this is seems to have taken up permanent residence in the past week to 10 days and I gotta say, I may have reached my breaking point here.
Maybe it's because I trained as a singer for so many years. I mean it took me over a year just to learn HOW to breathe properly to support my singing voice! So not being able to ever feel as if I can catch my breath, the pain, discomfort, the dizziness, the fear of stopping breathing altogether...it has truly pushed me to the brink. Maybe its simply that breath is our lifeforce. It doesn't get any more basic than breathing, right? And feeling that basic need being threatened is really scary and horrible.
I had 2 consecutive hours today where breathing didn't feel like a chore and I didn't feel an elephant sitting somewhere on my chest. Sadly, 2 whole hours in a row was a record for me lately. This is ridiculous and its no way to live. Can't I cash in some other body part and trade it for this breathing thing?
(Watch as MS Girl trys to bargain with the MonSter):
"Look, my left arm- I hardly use it, don't really need it. I'm a rightie. I could get along without it. So make it numb or weak or whatever. Take it instead! Or my vision- seriously! I have gotten pretty used to not seeing so well, to pirate patches and all that. My left eye is pretty useless anyway. Do you wanna blind it out or something? I just need to be able to breathe and not worry once an hour that I am on the verge of my imminent death!"
(And here is where you know she is Really getting desperate):
"Look, just give me back the Fire Legs. Really. I can handle it. I bought 2 new ice packs, which means my freezer is stocked full. I can cover myself in ice and really, its not that bad. I mean ok, its Bad, but NOT AS BAD AS THIS STUPID INABILITY TO EVER CATCH MY BREATH!"
(MS Girl attempts to take a slow, deliberate breath to assemble her thoughts. Sadly she only manages to make herself dizzy and then has some sort of coughing fit where it seems she only choked on her own saliva or something equally stupid):
"You know you really aren't very smart to play your hand this way. We have a long life together my little MonSter friend, but if you wanna play your spades upfront, that's fine. I'm in it to win the war. And I have troops the likes of which you've never seen. And I am officially Done asking The Powers That Be for help in 'making this pain go away'. Oh no, Dear MonSter...I have wised up to your shenanigans and I know now better what to ask for..."
I just ask for strength. Just give me the strength I need to fight this new battle and I will never never never give up the war. I don't ask you to fix me, to cure me or to heal me. If you have the ability or inclination for that sort of thing, there are a lot of people who need it Far more than I do. Heal them, okay? I just need a little more strength to get through this one without losing my mind or my fabulous sense of humor, okay?
Okay then.
Amen.
Sunday, September 23, 2007
Oh How I Love Good News!
Oh boy, what a week! Hang on to your hats, this will be a long one!
For about 10 days now I have had shortness of breath and tightness in my chest. Now when you call your doctor and use the term "shortness of breath" they immediately think you are having a heart attack or your lungs are collapsing or something. The nurse at Shepherd advised me to have my lungs and heart checked by my PCP right away. So I went and saw my Dad, who said my heart and lungs sounded fine. We did a peak flow test which measured a little better after nebulizing, but nothing to really get concerned about. Meanwhile the breathing isn't getting any better and feeling like you can't catch your breath is pretty darn miserable.
So we are off to Shepherd on Friday morning where we ask Dr.T about the breathing thing and he nods That Nod that I have come to recognize all too well. It says: "Yes, I know exactly what you are talking about. No, you are not imagining it. Yes, this is just another wacky MS symptom and No, I do not have a definitive cure for it." Dr. T is all too familiar with my complaint...he calls it the "MS Hug". I quickly respond, "That is a Horrible name for something so unpleasant and I refuse to call it that! I have named it the Boa Constrictor instead, thank you very much." He laughs at my joke, then goes on to explain that my brain signals are being misinterpreted and sent to my intercostal muscles (the tiny muscles in between each of your ribs) and telling them to SPASM...For no reason other than to irritate me. Oh, this disease is trying my patience!!!
So we have 2 options: a muscle relaxer like Baclofen or Zanaflex OR a drug called 4AP. Each come with pros and cons. Baclofen, for example will relax ALL my muscles and also make me drowsy and loopy. The 4AP...well now, this is a doozy. The funny name stands for 4-aminopyridine, and it is a drug that helps to improve the function of nerve signals across damaged or demylinated nerve fibers. It is currently used in over 10,000 MS patients as well as spinal cord injury patients and has had great success. The catch: it is not FDA-approved yet, therefore not covered by insurance. Costs look to be $60-70 per month, so it isnt astronomical. Oh! and the best part... it is used "agriculturally" as bird poison!!! NO I am not even kidding! They use it in NYC to control the pigeon population because it is considered a "humane" form of bird poison!
I joked with my stepdad and my other friend who are both on Coumadin (which was originally developed as rat poison) that together we could control the entire rodent population.
So I don't know...I am sending pleas to my brain to just stop this nonsense and let me breath easily again so I don't have to be forced to try bird poison. Maybe it will listen...if not, maybe I will try some of these things and see what happens. I went and saw my friend Rachel yesterday who is a massage therapist and one by one, she tried to relax each intercostal muscle by massaging the crap out of them. 24 hours later it seems to have helped. I try to be Superwoman with all this, but you reach a point where you are just miserable, your quality of life suffers and you are willing to try anything. I am not there yet, but I have my moments :-)
Now onto the really GOOD NEWS!!! Dr. T said he was "very pleased" with my MRI results. There were no signs of any active lesions (YAY!) and the 3 lesions in my left lateral whatever were so small you could barely see them...which means they Shrank! And are possibly healing!!! YIPPEE! Not all MS lesions heal and no one knows why some do and some don't but I am SO lucky that mine are shrinking! He said Betaseron (my injections) were definitely working, since there were no new/active lesions and he said I don't need to have another MRI for a year! He is that happy with how my brain looks! I feel like I just won the lottery or an Oscar or something...
I would like to take this opportunity to thank the Academy, the wonderful people at Betaseron (shout out to Judy!), everyone at Shepherd Spinal Center (Dr. T, Tracy and Emily you are all Rock Stars). I could not have done this without my dear family and friends and all of You out there cheering me and my brain on to victory! Thank you!!!
Ok back to reality. Dr. T did say there was one thing to note on my MRI. He did find some "mild demyelination" in my brain stem; however the damage did not look new, because new/active lesions show up differently when they inject me with this stuff during the MRI. Meaning: this brain stem damage was probably there before, but my April MRI was not as detailed. What is even MORE interesting is that Dr. T explains that brain stem lesions are Notorious for causing double vision, among other things.
Ah Ha! We have a culprit!!! Dr. T does NOT think I have this Myasthenia thing. He says my complaints with my vision make perfect sense if there is damage to the brain stem, i.e. worse when I am tired or overheated, because signals don't travel as well over nerve fibers when you are fatigued or hot! It all makes sense!!! SO, what now? Well, we wait to see if the brain stem will REmyelinate or not. Again, some do, some don't. I keep doing my injections and send happy healing thoughts to my brain. But, BOY, was I relieved that he doesn't think I have a Second disease to contend with! Who has time for such things?!?!
All in all, a very good appt with wonderful news. I don't expect the road to be bump-free or anything, but it is looking smoother all the time.
For about 10 days now I have had shortness of breath and tightness in my chest. Now when you call your doctor and use the term "shortness of breath" they immediately think you are having a heart attack or your lungs are collapsing or something. The nurse at Shepherd advised me to have my lungs and heart checked by my PCP right away. So I went and saw my Dad, who said my heart and lungs sounded fine. We did a peak flow test which measured a little better after nebulizing, but nothing to really get concerned about. Meanwhile the breathing isn't getting any better and feeling like you can't catch your breath is pretty darn miserable.
So we are off to Shepherd on Friday morning where we ask Dr.T about the breathing thing and he nods That Nod that I have come to recognize all too well. It says: "Yes, I know exactly what you are talking about. No, you are not imagining it. Yes, this is just another wacky MS symptom and No, I do not have a definitive cure for it." Dr. T is all too familiar with my complaint...he calls it the "MS Hug". I quickly respond, "That is a Horrible name for something so unpleasant and I refuse to call it that! I have named it the Boa Constrictor instead, thank you very much." He laughs at my joke, then goes on to explain that my brain signals are being misinterpreted and sent to my intercostal muscles (the tiny muscles in between each of your ribs) and telling them to SPASM...For no reason other than to irritate me. Oh, this disease is trying my patience!!!
So we have 2 options: a muscle relaxer like Baclofen or Zanaflex OR a drug called 4AP. Each come with pros and cons. Baclofen, for example will relax ALL my muscles and also make me drowsy and loopy. The 4AP...well now, this is a doozy. The funny name stands for 4-aminopyridine, and it is a drug that helps to improve the function of nerve signals across damaged or demylinated nerve fibers. It is currently used in over 10,000 MS patients as well as spinal cord injury patients and has had great success. The catch: it is not FDA-approved yet, therefore not covered by insurance. Costs look to be $60-70 per month, so it isnt astronomical. Oh! and the best part... it is used "agriculturally" as bird poison!!! NO I am not even kidding! They use it in NYC to control the pigeon population because it is considered a "humane" form of bird poison!
I joked with my stepdad and my other friend who are both on Coumadin (which was originally developed as rat poison) that together we could control the entire rodent population.
So I don't know...I am sending pleas to my brain to just stop this nonsense and let me breath easily again so I don't have to be forced to try bird poison. Maybe it will listen...if not, maybe I will try some of these things and see what happens. I went and saw my friend Rachel yesterday who is a massage therapist and one by one, she tried to relax each intercostal muscle by massaging the crap out of them. 24 hours later it seems to have helped. I try to be Superwoman with all this, but you reach a point where you are just miserable, your quality of life suffers and you are willing to try anything. I am not there yet, but I have my moments :-)
Now onto the really GOOD NEWS!!! Dr. T said he was "very pleased" with my MRI results. There were no signs of any active lesions (YAY!) and the 3 lesions in my left lateral whatever were so small you could barely see them...which means they Shrank! And are possibly healing!!! YIPPEE! Not all MS lesions heal and no one knows why some do and some don't but I am SO lucky that mine are shrinking! He said Betaseron (my injections) were definitely working, since there were no new/active lesions and he said I don't need to have another MRI for a year! He is that happy with how my brain looks! I feel like I just won the lottery or an Oscar or something...
I would like to take this opportunity to thank the Academy, the wonderful people at Betaseron (shout out to Judy!), everyone at Shepherd Spinal Center (Dr. T, Tracy and Emily you are all Rock Stars). I could not have done this without my dear family and friends and all of You out there cheering me and my brain on to victory! Thank you!!!
Ok back to reality. Dr. T did say there was one thing to note on my MRI. He did find some "mild demyelination" in my brain stem; however the damage did not look new, because new/active lesions show up differently when they inject me with this stuff during the MRI. Meaning: this brain stem damage was probably there before, but my April MRI was not as detailed. What is even MORE interesting is that Dr. T explains that brain stem lesions are Notorious for causing double vision, among other things.
Ah Ha! We have a culprit!!! Dr. T does NOT think I have this Myasthenia thing. He says my complaints with my vision make perfect sense if there is damage to the brain stem, i.e. worse when I am tired or overheated, because signals don't travel as well over nerve fibers when you are fatigued or hot! It all makes sense!!! SO, what now? Well, we wait to see if the brain stem will REmyelinate or not. Again, some do, some don't. I keep doing my injections and send happy healing thoughts to my brain. But, BOY, was I relieved that he doesn't think I have a Second disease to contend with! Who has time for such things?!?!
All in all, a very good appt with wonderful news. I don't expect the road to be bump-free or anything, but it is looking smoother all the time.
Monday, September 17, 2007
The Adventures of MS Girl
We last left our heroine at yet another exciting Dr appt where she was told there was a possibility that the lesion affecting her vision might be "fixed" as in "Sorry. You're stuck with this, my dear." Well MS Girl just didn't like that answer very much, so she went off in search of more answers.
Her journey led her to a Neuro-Opthamologist who did an extensive eye exam and concluded that she did not show signs of 6th cranial nerve palsy (what everyone thought the MS was doing to her brain causing double vision). Sooooo, then what is it? Dr. W seems to think it is muscular in origin.
Wait!?!? So what does this mean? Was the MS diagnosis wrong?
"Um, No." Dr. W and Dr. Thrower (and 4 other doctors) all agree it IS MS. "You do have MS. You also seem to have something else that is causing the problem with your vision."
Coincidence that the MS was discovered by the sudden onset of binocular diplopia? Perhaps. Or it is likely it WAS the MS messing up the eyes and now something else has taken over and continued the exciting battle going on in the left eye!!!
Next the journey took her to Dr. B, a Pediatric Opthomologist who knows a heck of a lot about muscular eye problems. A loooong visit later, Dr. B seems to think it is either A) the MS and all the new medicines have caused a major stress to my body and my left eye muscle has retaliated by deciding not to work, or B) it is another neurological disease called Myasthenia Gravis, which commonly causes muscle weakness in the eyes.
Ok, wait one cotton pickin minute. You are telling me I might have not One, but TWO neurological diseases???? You have got to be kidding me. I know I am a Drama Queen and all, but really...isn't this going a bit too far?
The thing is though, it would explain things. If it is this Myasthenia Gravis (MG) it explains why my vision hasn't improved with steroids or IVIG. And it would open the doors to new medicines to try that might improve my vision if it truly is muscular. But, holy crapola, Batman! Do I really have time for another major illness here? I don't know if I can be a cheerleader/advocate/spokesperson for TWO diseases! Plus this MG, while it doesn't appear life-threatening or totally horrific...it still doesn't look especially fun. There are things about it that could be a lot less than fun, in fact.
So for her next mission (on Friday), MS Girl will fly (well, actually she will be driven by someone) to Shepherd Spinal Center for her MRI results and he appt with Dr. Thrower. And she will ask to be tested for this Myasthenia thing to rule it in or out of the equation.
And she will stay positive and hope for the best, come what may.
Stay tuned for more exciting adventures of MS Girl...I think I may need a theme song...
Her journey led her to a Neuro-Opthamologist who did an extensive eye exam and concluded that she did not show signs of 6th cranial nerve palsy (what everyone thought the MS was doing to her brain causing double vision). Sooooo, then what is it? Dr. W seems to think it is muscular in origin.
Wait!?!? So what does this mean? Was the MS diagnosis wrong?
"Um, No." Dr. W and Dr. Thrower (and 4 other doctors) all agree it IS MS. "You do have MS. You also seem to have something else that is causing the problem with your vision."
Coincidence that the MS was discovered by the sudden onset of binocular diplopia? Perhaps. Or it is likely it WAS the MS messing up the eyes and now something else has taken over and continued the exciting battle going on in the left eye!!!
Next the journey took her to Dr. B, a Pediatric Opthomologist who knows a heck of a lot about muscular eye problems. A loooong visit later, Dr. B seems to think it is either A) the MS and all the new medicines have caused a major stress to my body and my left eye muscle has retaliated by deciding not to work, or B) it is another neurological disease called Myasthenia Gravis, which commonly causes muscle weakness in the eyes.
Ok, wait one cotton pickin minute. You are telling me I might have not One, but TWO neurological diseases???? You have got to be kidding me. I know I am a Drama Queen and all, but really...isn't this going a bit too far?
The thing is though, it would explain things. If it is this Myasthenia Gravis (MG) it explains why my vision hasn't improved with steroids or IVIG. And it would open the doors to new medicines to try that might improve my vision if it truly is muscular. But, holy crapola, Batman! Do I really have time for another major illness here? I don't know if I can be a cheerleader/advocate/spokesperson for TWO diseases! Plus this MG, while it doesn't appear life-threatening or totally horrific...it still doesn't look especially fun. There are things about it that could be a lot less than fun, in fact.
So for her next mission (on Friday), MS Girl will fly (well, actually she will be driven by someone) to Shepherd Spinal Center for her MRI results and he appt with Dr. Thrower. And she will ask to be tested for this Myasthenia thing to rule it in or out of the equation.
And she will stay positive and hope for the best, come what may.
Stay tuned for more exciting adventures of MS Girl...I think I may need a theme song...
Saturday, September 15, 2007
Faith, hope and love
This week was very long and there is a lot to tell; but I find myself so tired, physically and emotionally that I will have to wait until later to tell it all. So this will be short and sweet:
I bought myself a present last week, well actually I bought myself three presents. I was feeling kind of down and made the short drive down Atlanta Rd one afternoon to have lunch at my favorite spot (Muss & Turners...duh!). Afterward I walked past the shops there and wandered in one...SeaGrass? SawGrass? I can't remember...but I was immediately drawn to a counter full of jewelry (no surprise). On it there were all these simple silver rings with words engraved into them. 5 or 6 different words total I think. "Imagination", and something else...but the 3 I was drawn to were "Faith", "Hope" and "Love".
What 3 better words are there??
So I bought all 3 rings and have been wearing them ever since.
It's just silly jewelry but I find comfort in the words right there on my hand.
I wish you all those 3 things in life:
Faith in not only whatever higher power you may believe in, but also Faith in yourself and in your own strength....
Hope so that in even in the darkest times you can truly believe with all your heart that things Will get better...
and, the Love of family and friends to nourish your soul, give you comfort, give you joy and enrich your life forever.
I consider myself very blessed, not only to have new jewelry (which is always a plus!) but to have Faith, Hope and Love in my life.
I Corinthians 13: Love is patient; love is kind. Love is not envious or boastful or arrogant or rude. It does not insist on its own way: it is not irritable or resentful; it does not rejoice in wrong doing, but rejoices in truth. Love bears all things, believes all things, hopes all things, endures all things. And now faith, hope, and love abide, and the greatest of these is love.
I bought myself a present last week, well actually I bought myself three presents. I was feeling kind of down and made the short drive down Atlanta Rd one afternoon to have lunch at my favorite spot (Muss & Turners...duh!). Afterward I walked past the shops there and wandered in one...SeaGrass? SawGrass? I can't remember...but I was immediately drawn to a counter full of jewelry (no surprise). On it there were all these simple silver rings with words engraved into them. 5 or 6 different words total I think. "Imagination", and something else...but the 3 I was drawn to were "Faith", "Hope" and "Love".
What 3 better words are there??
So I bought all 3 rings and have been wearing them ever since.
It's just silly jewelry but I find comfort in the words right there on my hand.
I wish you all those 3 things in life:
Faith in not only whatever higher power you may believe in, but also Faith in yourself and in your own strength....
Hope so that in even in the darkest times you can truly believe with all your heart that things Will get better...
and, the Love of family and friends to nourish your soul, give you comfort, give you joy and enrich your life forever.
I consider myself very blessed, not only to have new jewelry (which is always a plus!) but to have Faith, Hope and Love in my life.
I Corinthians 13: Love is patient; love is kind. Love is not envious or boastful or arrogant or rude. It does not insist on its own way: it is not irritable or resentful; it does not rejoice in wrong doing, but rejoices in truth. Love bears all things, believes all things, hopes all things, endures all things. And now faith, hope, and love abide, and the greatest of these is love.
Sunday, September 9, 2007
Survivor
It started with a show on TLC called, "Crazy, Sexy Cancer". If you didn't have the pleasure of seeing it, check your listing for a reshowing. Wait, here:
http://www.crazysexycancer.com/
This young woman named Kris Carr was diagnosed with a rare and incurable cancer. She has approached it with a courage and a tenacious, fiesty spirit that I truly envy. If you take a minute to read her website, or her blog (which is also great) you will see what I mean and you will agree that, even though her cancer cannot technically be called "in remission", she is the epitome of the word Survivor.
It is a phrase we know too well. How many of us have family and friends who are "cancer survivors"? I always feel so proud to know cancer (sorry, Kris) CanSer survivors. I am amazed by their strength. I am amazed that anyone can look their own mortality square in the face and nothing forces you to do that like CanSer does.
Tonight my husband was watching a show about Lance Armstrong. Alot of it included his battle with CanSer and as they interviewed his teammates, family and friends I must have heard the word "survivor" no less than 20 times. And I found myself facing the strangest emotional response yet:
I was jealous.
Certainly not of people who have had CanSer. It is a horrifically devastating disease. But I was jealous of this word, "survivor".
Both Kris and Lance talk about how their outlooks on life changed after their illnesses. How could your outlook NOT change when you have faced the very real possibility of death? A lot of people say their lives changed for the better...they learned to appreciate things more, to not sweat the small stuff and to just cherish being alive. Isn't that something we all strive for...or should anyway?
I am NOT the same person I was before MS entered my life. It has drastically changed my outlook on many things. I can no longer plan my future without factoring in "what if MS does this...or that...?" Sure they are still just "what if's" but in my world, they are very real possibilities that have to be considered. It has affected my daily life and activities, my work, my relationships...I still cannot see properly, I live 60-70% of my day fighting either extreme fatigue, numbness, sensory problems, pain and/or balance issues. (The "I am not Drunk! I just have MS!" t-shirt is coming soon...)
But does all that really make me a "survivor"?
We all overcome hardships and adversity. We all make mistakes and learn from them. We all fight to become better men and women and leave the world a better place than we found it.
So here's to all the Survivors out there:
To a woman who raised 2 seriously ill children without ever asking "why me?" and now fights her own serious illness without ever asking "why me?"...To a man who fights to stay sober and remembers the true joys of life without needing alcohol...To a woman who is not only a cancer survivor but fights another devastating chronic illness and continues to inspire others...To a man who was told he would never be able to hear or speak normally, who overcame all odds and grew into someone I am so proud to know...
To all of you and so many more...
I raise my glass to you.
We are all Survivors in our own way.
http://www.crazysexycancer.com/
This young woman named Kris Carr was diagnosed with a rare and incurable cancer. She has approached it with a courage and a tenacious, fiesty spirit that I truly envy. If you take a minute to read her website, or her blog (which is also great) you will see what I mean and you will agree that, even though her cancer cannot technically be called "in remission", she is the epitome of the word Survivor.
It is a phrase we know too well. How many of us have family and friends who are "cancer survivors"? I always feel so proud to know cancer (sorry, Kris) CanSer survivors. I am amazed by their strength. I am amazed that anyone can look their own mortality square in the face and nothing forces you to do that like CanSer does.
Tonight my husband was watching a show about Lance Armstrong. Alot of it included his battle with CanSer and as they interviewed his teammates, family and friends I must have heard the word "survivor" no less than 20 times. And I found myself facing the strangest emotional response yet:
I was jealous.
Certainly not of people who have had CanSer. It is a horrifically devastating disease. But I was jealous of this word, "survivor".
Both Kris and Lance talk about how their outlooks on life changed after their illnesses. How could your outlook NOT change when you have faced the very real possibility of death? A lot of people say their lives changed for the better...they learned to appreciate things more, to not sweat the small stuff and to just cherish being alive. Isn't that something we all strive for...or should anyway?
I am NOT the same person I was before MS entered my life. It has drastically changed my outlook on many things. I can no longer plan my future without factoring in "what if MS does this...or that...?" Sure they are still just "what if's" but in my world, they are very real possibilities that have to be considered. It has affected my daily life and activities, my work, my relationships...I still cannot see properly, I live 60-70% of my day fighting either extreme fatigue, numbness, sensory problems, pain and/or balance issues. (The "I am not Drunk! I just have MS!" t-shirt is coming soon...)
But does all that really make me a "survivor"?
We all overcome hardships and adversity. We all make mistakes and learn from them. We all fight to become better men and women and leave the world a better place than we found it.
So here's to all the Survivors out there:
To a woman who raised 2 seriously ill children without ever asking "why me?" and now fights her own serious illness without ever asking "why me?"...To a man who fights to stay sober and remembers the true joys of life without needing alcohol...To a woman who is not only a cancer survivor but fights another devastating chronic illness and continues to inspire others...To a man who was told he would never be able to hear or speak normally, who overcame all odds and grew into someone I am so proud to know...
To all of you and so many more...
I raise my glass to you.
We are all Survivors in our own way.
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