Perfectionists. Type A Personalities. Overachievers.
I have always been a member of all three clubs.
I have always wanted to be the best at everything I did. Mediocrity was never an option for me. I have trouble sitting still for too long. There are too many things I want to be doing.
As we age, we can no longer do all the things we used to. With age comes the loss of energy, among other things. What you could do in any given day at 20 seems nearly impossible at age 40. I have just had to learn these lessons a bit sooner than most. What i could do at 27 now seems ridiculous at 29, but a lot happened in those 2 short years :-)
I have always struggled with defining myself by what i "do", by my accomplishments and by my productivity. As we age (or even face a neurological disease!) we must come to terms with the fact we can no longer accomplish as much as we once used to. But that doesn't make us less as people. Our lives can be rich with so much without being what we used to think of as "productive".
Easy to say. Much harder to come to terms with.
If I cannot define myself by what I "do" or "accomplish" then who am I? There are so many old labels that I can no longer live up to. For example, I am known for being fairly entertaining. I tell funny stories, I am occasionally witty. I think people enjoy my company, for the most part. So what about the days when I am really struggling to walk straight, can't see worth a darn and am in pain? What if I don't feel well enough to be funny and entertaining? can I still show up to the party as I am, even if I am not able to keep up my usual witty repartee? Or will everyone be disappointed that I'm not living up to my "usual self?"
Aren't we all constantly changing? relationships change, friends change, people have children and lose loved ones and get sick and get new jobs and all sorts of things. So I guess it is inevitable that I would change, too. Not in ways I ever anticipated, but that's Life, right?
Perhaps I have to come to terms with no longer being able to BE an Overachiever. I am going to have accept the words "good enough" and let words like "perfect" be something that lives only in myth and legend.
In fact, I have been sitting here trying to end this blog post properly for the past 20 minutes.
I am now walking away.
It is good enough.
It is not perfect, and sure I could have probably come up with a better ending, but I am really tired and fighting what my dad thinks is probably a sinus infection and I should be curled up on the couch with my husband and my box of kleenex.
It is good enough. And so am I. :-)
XOXO
Wednesday, July 23, 2008
Thursday, July 17, 2008
Pain...the body's way of letting you know something is wrong.
Your throat hurts, you find out you have strep throat and need an antibiotic.
If you break your arm, it needs a cast, and without pain you might not have known it was broken. I could go on, but you get the point. Pain is actually important. It is your body's way of communicating with you.
Neuropathic pain is the same- it is letting me know there is something wrong.
DUH. I have lesions. In My Brain.
But what else is the pain trying to tell me, perhaps?
It is a common joke among MSers that there should be some sort of betting and/or drinking game when watching the tv show "House". For those of you that don't know, it is a show set in a University hospital, where the lead character, Dr. Greg House, MD, is the country's leading diagnostician. He takes the medical cases that no one else can solve. The weird, crazy stuff. Like MS! So anyhow my husband and I often make bets on how long into the episode someone will throw out "multiple sclerosis" as the patient of the week's diagnosis. 80% of the episodes talk about MS, at least briefly.
Anyway, I was watching an episode a few months back where a young patient on the show was actually diagnosed with MS. The patient asked what MS was. And the handsome Dr. Chase tried to sum it up in one sentence. It went something like this:
"Well, MS is a painful disease. It can affect your bladder/bowel functions. It can also affect mobility. It is incurable, but there are lots of promising treatments to prolong your quality of life..." blah blah blah. Take it all with a grain of salt - it IS a tv drama! They have to make everything sound dramatic; however, all of those things Are true about MS. And it has stayed in my mind that the writers (for whatever reason) chose "pain" as the leading symptom when sharing this character's fate with him.
MS is a painful disease. I have been sorely reminded of that fact this week.
Maybe its the summer and the heat. I also seem to be fighting some sort of head cold. And since heat and infection are both major stressors to my disease it makes sense that i feel pretty awful. I am having horrible neuropathic pain/neuralgia, which I wouldn't wish on my worst enemy. So while this particular pain isn't telling me anything new, it must still be trying to tell me something. To Slow down? To get more rest? To keep my core temperature down and avoid the Atlanta heat? telling me my cold needs some TLC and vitamin C and the ultra soft kleenex?
I need to be a better listener. What is it telling me?
"Go drink more water. Go to bed super early. Find something good to eat for dinner. Stop judging yourself for being angry and sad about being in so much pain. Its okay to be angry and sad. Its also okay to have chocolate on those days."
Your throat hurts, you find out you have strep throat and need an antibiotic.
If you break your arm, it needs a cast, and without pain you might not have known it was broken. I could go on, but you get the point. Pain is actually important. It is your body's way of communicating with you.
Neuropathic pain is the same- it is letting me know there is something wrong.
DUH. I have lesions. In My Brain.
But what else is the pain trying to tell me, perhaps?
It is a common joke among MSers that there should be some sort of betting and/or drinking game when watching the tv show "House". For those of you that don't know, it is a show set in a University hospital, where the lead character, Dr. Greg House, MD, is the country's leading diagnostician. He takes the medical cases that no one else can solve. The weird, crazy stuff. Like MS! So anyhow my husband and I often make bets on how long into the episode someone will throw out "multiple sclerosis" as the patient of the week's diagnosis. 80% of the episodes talk about MS, at least briefly.
Anyway, I was watching an episode a few months back where a young patient on the show was actually diagnosed with MS. The patient asked what MS was. And the handsome Dr. Chase tried to sum it up in one sentence. It went something like this:
"Well, MS is a painful disease. It can affect your bladder/bowel functions. It can also affect mobility. It is incurable, but there are lots of promising treatments to prolong your quality of life..." blah blah blah. Take it all with a grain of salt - it IS a tv drama! They have to make everything sound dramatic; however, all of those things Are true about MS. And it has stayed in my mind that the writers (for whatever reason) chose "pain" as the leading symptom when sharing this character's fate with him.
MS is a painful disease. I have been sorely reminded of that fact this week.
Maybe its the summer and the heat. I also seem to be fighting some sort of head cold. And since heat and infection are both major stressors to my disease it makes sense that i feel pretty awful. I am having horrible neuropathic pain/neuralgia, which I wouldn't wish on my worst enemy. So while this particular pain isn't telling me anything new, it must still be trying to tell me something. To Slow down? To get more rest? To keep my core temperature down and avoid the Atlanta heat? telling me my cold needs some TLC and vitamin C and the ultra soft kleenex?
I need to be a better listener. What is it telling me?
"Go drink more water. Go to bed super early. Find something good to eat for dinner. Stop judging yourself for being angry and sad about being in so much pain. Its okay to be angry and sad. Its also okay to have chocolate on those days."
Saturday, July 5, 2008
MS-Free Zones
Last week I helped my sister Helene, who asked me to come in and do hair & makeup for 10 actors & actresses appearing in "Charley's Aunt". The students were awesome and so patient with me as I played around with different wigs and moustaches and makeup techniques. I actually had to pull out my old college textbook to remember how to properly apply a bald cap (Yes, I actually had an entire course in college devoted to stage makeup techniques!)
I re-learned old makeup techniques and invented some new ones. But what I really learned last week came as a complete surprise... For three hours a day I was just "Caroline, the lady helping with hair & makeup". The kids didn't know that my feet have been almost entirely numb for weeks. They didn't think anything of it when I squinted one eye at them, or looked at them sideways to try and see them better. They had no clue that I was anything other than clumsy when I dropped things every five minutes. They merely thought I was flaky when I asked them the same questions, "Did I tie the gold ribbon or the pink ribbon in your hair yesterday?" when in reality my short term memory is not what it used to be.
For three hours a day for five whole days I was just someone who helped put on a show. As I braided hair and powdered faces I could almost forget the constant pain, the numbness, the poor vision. I could almost, Almost forget that I had MS. For three whole hours!
It reminds me of the line from "The Wizard of Oz", in the very beginning, when Auntie Em tells Dorothy to go find "a place where there isn't any trouble".
"A place where there isn't any trouble. Do you suppose there is such a place, Toto? There must be. It's not a place you can get to by a boat or a train. It's far, far away. Behind the moon, beyond the rain..." And Dorothy begins to sing my favorite song.
A place where there isn't any trouble...
An MS-Free Zone...A place where MS is not allowed to visit.
In those few precious hours I learned that moments in time exist where I can just be Caroline. I can make-believe that i am not sick, not in pain, not impaired. I know it is simply a moment and it will not last; however, having those moments gives me strength. And hope. It makes the moments of pain and frustration a little easier.
Who knows where the next MS-Free Zone will be? I am excited at the thought of it, whether it is three hours or three minutes. I aim to find more of them. And then somehow, slowly, I may be able to find my way back to myself. Not my former self, but a new version. Someone I am still getting to know, but every day liking a little bit more. :-)
Wednesday, June 18, 2008
Attitude is Everything
People ask me all the time, "How do stay so positive having this painful, disabling, potentially devastating disease?"
I usually answer with some variation of, "Well. What choice do I have?"
But what goes unsaid is that there IS a choice.
There is Always a choice. It may not be the choices you want. I certainly would not have chosen MS for my life, but since it chose me I can now choose how I will react to it.
This story was sent to me by my Betaseron nurse Judy:
John is the kind of guy you love to hate. He is always in a good mood and always has something positive to say. When someone would ask him how he was doing, he would reply, 'If I were any better, I would be twins!'
He was a natural motivator. If an employee was having a bad day, John was there telling the employee how to look on the positive side of the situation. Seeing this style really made me curious, so one day I went up and asked him, 'I don't get it! You can't be a positive person all of the time How do you do it?'
'Yeah, right, it's not that easy,' I protested.
I reflected on what he said. Soon hereafter, I left the Tower Industry to start my own business. We lost touch, but I often thought about him when I made a choice about life instead of reacting to it. Several years later, I heard that he was involved in a serious accident, falling some 60 feet from a communications tower. After 18 hours of surgery and weeks of intensive care, he was released from the hospital with rods placed in his back. I saw him about six months after the accident. When I asked him how he was, he replied, 'If I were any better, I'd be twins. Wanna see my scars?'
I declined to see his wounds, but I did ask him what had gone through his mind as the accident took place. 'The first thing that went through my mind was the well-being of my soon-to-be born daughter,' he replied. 'Then, as I lay on the ground, I remembered that I had two choices: I could choose to live or...I could choose to die. I chose to live.'
I usually answer with some variation of, "Well. What choice do I have?"
But what goes unsaid is that there IS a choice.
There is Always a choice. It may not be the choices you want. I certainly would not have chosen MS for my life, but since it chose me I can now choose how I will react to it.
This story was sent to me by my Betaseron nurse Judy:
John is the kind of guy you love to hate. He is always in a good mood and always has something positive to say. When someone would ask him how he was doing, he would reply, 'If I were any better, I would be twins!'
He was a natural motivator. If an employee was having a bad day, John was there telling the employee how to look on the positive side of the situation. Seeing this style really made me curious, so one day I went up and asked him, 'I don't get it! You can't be a positive person all of the time How do you do it?'
He replied, 'Each morning I wake up and say to myself, you have two choices today. You can choose to be in a good mood or ... you can choose to be in a bad mood I choose to be in a good mood. Each time something bad happens, I can choose to be a victim or...I can choose to learn from it. I choose to learn from it. Every time someone comes to me complaining, I can choose to accept their complaining or... I can point out the positive side of life. I choose the positive side of life.'
'Yeah, right, it's not that easy,' I protested.
'Yes, it is,' he said. 'Life is all about choices. When you cut away all the junk, every situation is a choice. You choose how you react to situations. You choose how people affect your mood. You choose to be in a good mood or bad mood. The bottom line: It's your choice how you live your life.'
I reflected on what he said. Soon hereafter, I left the Tower Industry to start my own business. We lost touch, but I often thought about him when I made a choice about life instead of reacting to it. Several years later, I heard that he was involved in a serious accident, falling some 60 feet from a communications tower. After 18 hours of surgery and weeks of intensive care, he was released from the hospital with rods placed in his back. I saw him about six months after the accident. When I asked him how he was, he replied, 'If I were any better, I'd be twins. Wanna see my scars?'
I declined to see his wounds, but I did ask him what had gone through his mind as the accident took place. 'The first thing that went through my mind was the well-being of my soon-to-be born daughter,' he replied. 'Then, as I lay on the ground, I remembered that I had two choices: I could choose to live or...I could choose to die. I chose to live.'
'Weren't you scared? Did you lose consciousness?' I asked
He continued, '..the paramedics were great. They kept telling me I was going to be fine. But when they wheeled me into the ER and I saw the expressions on the faces of the doctors and nurses, I got really scared. In their eyes, I read 'he's a dead man'. I knew I needed to take action.'
'What did you do?' I asked.
'What did you do?' I asked.
'Well, there was a big burly nurse shouting questions at me,' said John. 'She asked if I was allergic to anything 'Yes, I replied.' The doctors and nurses stopped working as they waited for my reply. I took a deep breath and yelled, 'Gravity''
Over their laughter, I told them, 'I am choosing to live. Operate on me as if I am alive, not dead.'
He lived, thanks to the skill of his doctors, but also because of his amazing attitude... I learned from him that every day we have the choice to live fully.
Attitude, after all, is everything.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.' Matthew 6:34
Attitude, after all, is everything.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.' Matthew 6:34
Wednesday, June 11, 2008
Ways to give
I have been so bad about blogging this month!
The heat is really hard on us MSers. I won't bore you with the ugly details but I have been a little under the weather this week. Today was better, it was a little cooler. But man am I dreading August right about now....Ugh.
So while summer brings heat, humidity, pool parties and other things it also brings....My Birthday. Yes, I am using my blog to remind everyone of my birthday (July 19th...did you write it down?) but really I bring it up because I would like to address a more serious issue:
I do not need presents.
Cards, yes. I need cards.
I am truly a kid at Christmas every time I go to the mailbox in the month of July. I admit it. Call me crazy. I am a card addict. I have a problem. There should be a support group! So yes, please feel free to send cards. :-D
But back to presents- I don't need anything. Really.
However, if you would like to buy Yourself or Someone Else you know a fabulous present in honor of my birthday...well, now that would be a swell idea! And do I have some ideas for such presents? Well of course I do!
For the dog lovers in your life we have a Dog Toy for MS!
http://www.carealotpets.com/item-detail/?ItemID=000000000009925
The heat is really hard on us MSers. I won't bore you with the ugly details but I have been a little under the weather this week. Today was better, it was a little cooler. But man am I dreading August right about now....Ugh.
So while summer brings heat, humidity, pool parties and other things it also brings....My Birthday. Yes, I am using my blog to remind everyone of my birthday (July 19th...did you write it down?) but really I bring it up because I would like to address a more serious issue:
I do not need presents.
Cards, yes. I need cards.
I am truly a kid at Christmas every time I go to the mailbox in the month of July. I admit it. Call me crazy. I am a card addict. I have a problem. There should be a support group! So yes, please feel free to send cards. :-D
But back to presents- I don't need anything. Really.
However, if you would like to buy Yourself or Someone Else you know a fabulous present in honor of my birthday...well, now that would be a swell idea! And do I have some ideas for such presents? Well of course I do!
For the dog lovers in your life we have a Dog Toy for MS!
http://www.carealotpets.com/item-detail/?ItemID=000000000009925
(this site also has shirts, mugs and more - links are on the left-hand side)
For anyone and everyone: Magnets, Mugs, Mousepads and more for MS!
http://www.zazzle.com/ohgreeting/home
So this year treat yourself to one of the fabulous products...send one to a friend...send one to your great aunt myrtle...then just send me a nice Hallmark and tell me what you bought and who you gave it to.
I can think of no better birthday present than a bunch of cards plastered all over my kitchen telling me about the MS gifts given to people everywhere in honor of my birthday!!
Friday, May 30, 2008
I am woman
I like women. I like them as much as or more than I like almost anybody.
But the women I like best aren't always strong, and they're certainly not invincible. They're creative, they're idiosyncratic and they're around if you need them. They complain, they console, and the can shop their way through virtually any crisis.
They know how to raise hell and they know how to raise children. They can spot a scam, a lousy doctor and a crummy boyfriend in under 10 seconds. They've perfected the withering stare that makes a nasty salesperson, flight attendant or coworker fold like an origami swan.
My favorite women may feel bad about their necks but they feel pretty damn good about their legs. They've never met a carbohydrate they didn't want to have a close personal relationship with. They brake for sex, sleep and solitude, cashmere and caffeine.
They've got nerves of steel, the courage of their convictions and excellent footwear. They're sugar and spice and everything I aspire to. They remain cautiously optimistic.
We are strong, and when one of us isn't feeling all that invincible, the other will take the wheel.
We are women.
- Lisa Kogan
But the women I like best aren't always strong, and they're certainly not invincible. They're creative, they're idiosyncratic and they're around if you need them. They complain, they console, and the can shop their way through virtually any crisis.
They know how to raise hell and they know how to raise children. They can spot a scam, a lousy doctor and a crummy boyfriend in under 10 seconds. They've perfected the withering stare that makes a nasty salesperson, flight attendant or coworker fold like an origami swan.
My favorite women may feel bad about their necks but they feel pretty damn good about their legs. They've never met a carbohydrate they didn't want to have a close personal relationship with. They brake for sex, sleep and solitude, cashmere and caffeine.
They've got nerves of steel, the courage of their convictions and excellent footwear. They're sugar and spice and everything I aspire to. They remain cautiously optimistic.
We are strong, and when one of us isn't feeling all that invincible, the other will take the wheel.
We are women.
- Lisa Kogan
Tuesday, May 20, 2008
Summer.
A time of family vacations, swimming and laying by the pool, longer days and hotter nights, mosquitos, fireflies...memories of running through sprinklers, eating popsicles and spitting watermelon seeds...trying not to get too sunburned at the beach and as bathing suit season approaches, thousands of women regret not exercising more during those cold winter months.
I was born in July, so summer also means I have a birthday to celebrate. Summer has a lot of positives; however for MSer's, summer comes with a few negatives as well.
I made peace with my cellulite years ago. I can't really do anything about it. Also I am just under 6 feet tall. I am not a small person, nor am I a supermodel, so being a size 0 or 2 or even 8 is just not in my cards. Unless I want to starve myself, which I don't. I like having curves and frankly this past year they have come quite in handy as I have to inject myself sub-cutaneously every other day. For those not familiar with "sub-q" injections, you have to pinch about 1-2 inches of flesh away from your body to avoid hitting muscle. This is a heck of a lot easier when you have more flesh! In fact super-skinny people have to do subq injections differently than us curvy folks to avoid hitting something important, like muscles or organs!
So i am not going to look like Heidi Klum in a bathing suit and I am okay with that.
I am not yet okay with the loss of my perfect porcelain skin. I was blessed with a lovely complexion. So even if I was curvy in my bikini my skin was quite pretty and so I hopefully wasn't offending too many people. I would get a nice smattering of freckles in the summer and if I wore sunscreen, I wouldn't burn too bad and would get a nice golden glow. Now to see me in a bathing suit you would think I was some sort of alien torture victim. The entire surface area from my belly button to my knees is covered in welts, bruises...red and purple raised splotches that somewhat resemble hives. And when you have to give yourself injections every other day, by the time one set heals you are already covered with the new round of injection site reactions, so there is no "down time".
Don't get me wrong. I love my magical wonder drug that is keeping MS from eating up my entire brain and slowing the progression of my disease. It is truly a wonder drug and without it I shudder to think what would happen. I try to think of these bruises as Battle Scars...the proof of the ongoing battle I do with the MonSter and each welt represents a win for me!
I made peace with my cellulite years ago. I can't really do anything about it. Also I am just under 6 feet tall. I am not a small person, nor am I a supermodel, so being a size 0 or 2 or even 8 is just not in my cards. Unless I want to starve myself, which I don't. I like having curves and frankly this past year they have come quite in handy as I have to inject myself sub-cutaneously every other day. For those not familiar with "sub-q" injections, you have to pinch about 1-2 inches of flesh away from your body to avoid hitting muscle. This is a heck of a lot easier when you have more flesh! In fact super-skinny people have to do subq injections differently than us curvy folks to avoid hitting something important, like muscles or organs!
So i am not going to look like Heidi Klum in a bathing suit and I am okay with that.
I am not yet okay with the loss of my perfect porcelain skin. I was blessed with a lovely complexion. So even if I was curvy in my bikini my skin was quite pretty and so I hopefully wasn't offending too many people. I would get a nice smattering of freckles in the summer and if I wore sunscreen, I wouldn't burn too bad and would get a nice golden glow. Now to see me in a bathing suit you would think I was some sort of alien torture victim. The entire surface area from my belly button to my knees is covered in welts, bruises...red and purple raised splotches that somewhat resemble hives. And when you have to give yourself injections every other day, by the time one set heals you are already covered with the new round of injection site reactions, so there is no "down time".
Don't get me wrong. I love my magical wonder drug that is keeping MS from eating up my entire brain and slowing the progression of my disease. It is truly a wonder drug and without it I shudder to think what would happen. I try to think of these bruises as Battle Scars...the proof of the ongoing battle I do with the MonSter and each welt represents a win for me!
That is until bathing suit season arrives...and then I feel sorry for the poor people that have to look at my skin, and think A) I am very clumsy and walk into things constantly, or B) I am starting some strange and entirely unattractive tattoo trend.
Plus isn't going to the beach supposed to be a "vacation"? It is very hard to feel like you are on vacation when every time you suit up and look in the mirror you are slapped in the face with the reminder of your disease. And I haven't even mentioned my Favorite part about summer nowadays.
Two words: Heat Intolerance
See, for people with MS, getting overheated can cause really bad things to happen. They exacerbate current symptoms, can temporarily bring on new symptoms and basically just make you feel really, really awful. When my body temperature rises usually the following happens (in no particular order): my vision goes completely to crap and even magical glasses do nothing to help, the ringing in my ears becomes deafening, my hands and fingers do this buzzing/tingling sensation which is often followed by numbness, my feet and toes go numb and my legs start burning in pain and finally the Boa Constrictor grabs me around the middle for a big ole hug. Once this happens the cooling down process (getting into someplace with A/C and covering myself in ice packs) can reverse some symptoms. Others will then require medication. Then once all painful symptoms are under control you can return to the beach or the pool for Round Two. Lather, rinse, repeat.
Plus isn't going to the beach supposed to be a "vacation"? It is very hard to feel like you are on vacation when every time you suit up and look in the mirror you are slapped in the face with the reminder of your disease. And I haven't even mentioned my Favorite part about summer nowadays.
Two words: Heat Intolerance
See, for people with MS, getting overheated can cause really bad things to happen. They exacerbate current symptoms, can temporarily bring on new symptoms and basically just make you feel really, really awful. When my body temperature rises usually the following happens (in no particular order): my vision goes completely to crap and even magical glasses do nothing to help, the ringing in my ears becomes deafening, my hands and fingers do this buzzing/tingling sensation which is often followed by numbness, my feet and toes go numb and my legs start burning in pain and finally the Boa Constrictor grabs me around the middle for a big ole hug. Once this happens the cooling down process (getting into someplace with A/C and covering myself in ice packs) can reverse some symptoms. Others will then require medication. Then once all painful symptoms are under control you can return to the beach or the pool for Round Two. Lather, rinse, repeat.
I think the beach can be a lovely relaxing place. I used to enjoy sitting under an umbrella with a crossword puzzle and a cold fruity beverage, watching the waves roll in. I have even been known to make a sand castle or two in my past. But it is very hard to relax when the heat brings on such painful things. As luck would have it, the beach is my husband's #1 vacation of choice and he is like a kid at Christmas when you put him on some sand in front of an ocean.
We are headed to the beach with some friends this holiday weekend. I am packing my usual array of sunscreens, bikinis, cute cover-ups and hats, crossword puzzles (some large print!), my ipod and flip-flops. I am also bringing the 5 bottles of medication I require daily plus 3 injections, plus all 6 ice packs from my freezer. And I try to remind myself that "going to the beach" is really just an excuse for a change of scenery, to hang out with friends and maybe get a few new freckles. It doesn't require sitting 24/7 under the blazing sun.
And if anyone asks, "Oh my! What happened to your legs and your stomach? What are those?"
I simply reply,"Those are my Battle Scars, thank you very much."
Tuesday, May 13, 2008
Fear not for the future
Do you ever feel as if you are rushing every day towards the future, often barreling forward at such a speed that you are forgetting to stop and smell the proverbial roses?
I have been one of those people most of my life and while in many ways, MS has helped me to slow down, in other ways I feel more pressure than ever to keep moving forward, often at an unrealistic pace.
Last week, there was a segment on CBS Sunday Morning about a woman in her late 50’s who had been living with MS for over a decade. Her passion was climbing mountains. Literally. Like Mt. Kilimanjaro or crazy big mountains like that. She had set a goal for herself to summit a certain number in a set time period. What struck me was during her interview she said something to the effect of, “I want to do as much as I physically can before my disease progresses further and makes it impossible. I will climb as many mountains as I can before that day comes.”
There is a quote that pops up in numerous books on MS and on websites: “Hope for the best. Prepare for the worst.” After reading this phrase a zillion times I finally realized I had rarely processed the second sentence. I had been too busy hoping for the best! This fellow MSer on my TV seemed to be doing both. She was pushing her body to its physical limits while she still had a choice in the matter…before MS took it from her in bits and pieces, making things like mountain climbing next to impossible.
Suddenly I felt this incredible weight in knowing that I, too, could potentially have a much shortened “quality of life”. Sure, I could also be hit by a bus tomorrow and obviously we cannot live our lives paralyzed by fear of the unknown future.
On the other hand, there is a word I have had a hard time mentally digesting: degenerative. I think overall I have handled my diagnosis better than most and I digest other words pretty darn well. For example,
Chronic: means I don’t ever get a vacation from MS. It is with me all the time.
Incurable: I get to have this stupid thing until some brilliant scientist somewhere figures out how to make it go poof!
Neurological: affects my brain, and in turn my central nervous system, so basically everything (except my striking good looks)
But, Degenerative: something which worsens over time…
And yet there are so many MSers out there who have been on one of these fabulous drugs and have been relapse free for years! YEARS! That is awesome. Then there are MSers on the exact same drugs who have relapse after relapse and get progressively worse and worse. And no one knows why that is and hence the frustration of scientists trying to cure such a tricky disease.
So what now? Do I finally update and complete that life list of mine trying to check everything off at lightening speed in hopes of outrunning MS? Sounds difficult…and exhausting. But in 10, 20, 30 years I don’t want to look back and say “If only…”
Sometimes it feels like such an effort just to get through any given day. The thought of taking on something as mammoth as mountain climbing (or whatever else is on your life list)…well, it just feels impossible. Where do you begin? HOW do you begin? Which goal do you choose to complete first? Sing the national anthem at a sporting event? (been on my list since 1991) Swim with dolphins? (been on the list at least that long) Own my own home? (Check!) Own my own horse? (I think this was one of those When-I-Win-The-Lottery goals…) Travel to Europe? (Certainly not with the current exchange rates!)
And the list goes on and on. It doesn’t even include all those everyday things in life that I want to do like entertain in our new home and throw all sorts of parties: tea parties and cocktail parties and sing-a-long parties and wacky theme parties and Halloween parties. I want to learn to be a better cook and how to make a perfect dirty martini like my husband can. I want to FINALLY get my house done and in order and furnished. I want to do all sorts of traveling. I want to be a better calligrapher and a better singer and teacher and choreographer. I want to figure out what I want to be when I grow up and make new friends and visit with old ones. I want to go to comedy clubs and go to Broadway shows and watch improv and visit art museums. I want to do all these things andso much more.
If only there was a crystal ball so that we could all take a peek and know what our future holds.
I have been one of those people most of my life and while in many ways, MS has helped me to slow down, in other ways I feel more pressure than ever to keep moving forward, often at an unrealistic pace.
Last week, there was a segment on CBS Sunday Morning about a woman in her late 50’s who had been living with MS for over a decade. Her passion was climbing mountains. Literally. Like Mt. Kilimanjaro or crazy big mountains like that. She had set a goal for herself to summit a certain number in a set time period. What struck me was during her interview she said something to the effect of, “I want to do as much as I physically can before my disease progresses further and makes it impossible. I will climb as many mountains as I can before that day comes.”
There is a quote that pops up in numerous books on MS and on websites: “Hope for the best. Prepare for the worst.” After reading this phrase a zillion times I finally realized I had rarely processed the second sentence. I had been too busy hoping for the best! This fellow MSer on my TV seemed to be doing both. She was pushing her body to its physical limits while she still had a choice in the matter…before MS took it from her in bits and pieces, making things like mountain climbing next to impossible.
Suddenly I felt this incredible weight in knowing that I, too, could potentially have a much shortened “quality of life”. Sure, I could also be hit by a bus tomorrow and obviously we cannot live our lives paralyzed by fear of the unknown future.
On the other hand, there is a word I have had a hard time mentally digesting: degenerative. I think overall I have handled my diagnosis better than most and I digest other words pretty darn well. For example,
Chronic: means I don’t ever get a vacation from MS. It is with me all the time.
Incurable: I get to have this stupid thing until some brilliant scientist somewhere figures out how to make it go poof!
Neurological: affects my brain, and in turn my central nervous system, so basically everything (except my striking good looks)
But, Degenerative: something which worsens over time…
And yet there are so many MSers out there who have been on one of these fabulous drugs and have been relapse free for years! YEARS! That is awesome. Then there are MSers on the exact same drugs who have relapse after relapse and get progressively worse and worse. And no one knows why that is and hence the frustration of scientists trying to cure such a tricky disease.
So what now? Do I finally update and complete that life list of mine trying to check everything off at lightening speed in hopes of outrunning MS? Sounds difficult…and exhausting. But in 10, 20, 30 years I don’t want to look back and say “If only…”
Sometimes it feels like such an effort just to get through any given day. The thought of taking on something as mammoth as mountain climbing (or whatever else is on your life list)…well, it just feels impossible. Where do you begin? HOW do you begin? Which goal do you choose to complete first? Sing the national anthem at a sporting event? (been on my list since 1991) Swim with dolphins? (been on the list at least that long) Own my own home? (Check!) Own my own horse? (I think this was one of those When-I-Win-The-Lottery goals…) Travel to Europe? (Certainly not with the current exchange rates!)
And the list goes on and on. It doesn’t even include all those everyday things in life that I want to do like entertain in our new home and throw all sorts of parties: tea parties and cocktail parties and sing-a-long parties and wacky theme parties and Halloween parties. I want to learn to be a better cook and how to make a perfect dirty martini like my husband can. I want to FINALLY get my house done and in order and furnished. I want to do all sorts of traveling. I want to be a better calligrapher and a better singer and teacher and choreographer. I want to figure out what I want to be when I grow up and make new friends and visit with old ones. I want to go to comedy clubs and go to Broadway shows and watch improv and visit art museums. I want to do all these things andso much more.
What if my vision continues to get worse and I lose my sight completely? Should I visit all those museums now so that i can at least see parts of the paintings??
Or if I knew I would start having trouble walking, should I do all that traveling now, while I don't have to worry about handicapped accessibility?
If only there was a crystal ball so that we could all take a peek and know what our future holds.
In the meantime I guess we just do the best we can to Live in the Present and enjoy it as much as possible.
Saturday, May 3, 2008
Happy Anniversary
It was a year ago that I heard those fateful words, "You have MS."
Some people might find it strange to "celebrate" such a day.
But I celebrate the fact that despite living with an incurable degenerative disease, I still find so many ways to enjoy life and to hopefully bring joy to others.
I celebrate because in spite of my recent relapse I have what my doctors deem a "stable" MRI and no new permanent damage.
I celebrate that I have found ways to help other people living with MS and raising awareness and money towards someday finding a cure.
My vision certainly isn't what it used to be...and maybe I have balance problems and days where I can't walk straight. I am in pain a lot more than I wish to be and numbness in my feet and hands makes for many clumsy days.
But looking at the big picture I consider myself very lucky to be doing as well as I am. There are many people who have far worse burdens to bear than mine. There are people who have to face this disease or other horrific diseases without the amazing support of family and friends like mine.
So to all my faithful readers out there (all 7 of you...Hi Mom!) Thank You for letting me put my thoughts and fears and joys and sadness out into cyberspace and for following me on this wacky journey. The adventure is only beginning and there are many more ways to help and to fight and laugh along the way. Thank you all for being my traveling companions as I walk down my own yellow brick road of life...wearing my red shoes!
Much love,
Caroline
Some people might find it strange to "celebrate" such a day.
But I celebrate the fact that despite living with an incurable degenerative disease, I still find so many ways to enjoy life and to hopefully bring joy to others.
I celebrate because in spite of my recent relapse I have what my doctors deem a "stable" MRI and no new permanent damage.
I celebrate that I have found ways to help other people living with MS and raising awareness and money towards someday finding a cure.
My vision certainly isn't what it used to be...and maybe I have balance problems and days where I can't walk straight. I am in pain a lot more than I wish to be and numbness in my feet and hands makes for many clumsy days.
But looking at the big picture I consider myself very lucky to be doing as well as I am. There are many people who have far worse burdens to bear than mine. There are people who have to face this disease or other horrific diseases without the amazing support of family and friends like mine.
So to all my faithful readers out there (all 7 of you...Hi Mom!) Thank You for letting me put my thoughts and fears and joys and sadness out into cyberspace and for following me on this wacky journey. The adventure is only beginning and there are many more ways to help and to fight and laugh along the way. Thank you all for being my traveling companions as I walk down my own yellow brick road of life...wearing my red shoes!
Much love,
Caroline
Saturday, April 26, 2008
WalkMS 2008
While the final tally is not yet in, as it stands today Team Wearing Red Shoes has raised over $13,700 is the TOP fundraiser for the Marietta WalkMS and is #3 fundraising team in the entire state of Georgia!All I can say is Wow.
I am so honored and so humbled by the generosity of so many people.
Our entire team completed the 5k cheering and dancing across the finish line in our red shoes.
What a wonderful event it was. The NMSS did a great job organizing and planning. And I was never more proud than when Roy announced "...our top team in first place...Wearing Red Shoes!" Amazing.
At one point right before the race it was asked for a show of hands in the 900+ crowd of how many people out there were currently living with MS. I was surprised at the small number of people that raised their hands as I waved mine in the air. Then it was asked how many people in the crowd were there because someone they loved was living with MS. The cheering and clapping was deafening.
It goes to show that even with a mysterious neurological disease such as MS, I am never alone in my daily battle. I am surrounded by so many people who love me and fight with me. They pick me up both literally and figuratively! And I have never felt that love more than on April 19, 2008 when I looked down at my family and friends and was surrounded by 22 pairs of beautiful, inspiring and powerful Red Shoes.
Thursday, April 24, 2008
Music, Mummies and Martinis for MS!
If you live in the Atlanta area and don't have plans this Sunday night, feel free to join us for Music, Mummies and Martinis for MS!
The National MS Society is hosting a lovely cocktail event fundraiser at the Michael C. Carlos Museum at Emory University. Enjoy a variety of musical performances as you stroll through the galleries, visiting the Egyptian exhibits currently on display (hence, the mummies). Your donation includes as many trips as you wish to the martini & wine bar plus heavy hors d'oeurves.
Chris, Mom, George and I have purchased our tickets and will be there with bells on! Well, no actually I will be there with red shoes on! Gotta keep up my Wearing Red Shoes image and all. ;-)
If you would like to join us, click on the link below and then click "Buy Tickets" and your name will be added to the guest list at the event. If you cannot make it, no problem...there will be many more fun and exciting events in our future....
http://gaa.nationalmssociety.org/site/Calendar?view=Detail&id=158590
The National MS Society is hosting a lovely cocktail event fundraiser at the Michael C. Carlos Museum at Emory University. Enjoy a variety of musical performances as you stroll through the galleries, visiting the Egyptian exhibits currently on display (hence, the mummies). Your donation includes as many trips as you wish to the martini & wine bar plus heavy hors d'oeurves.
Chris, Mom, George and I have purchased our tickets and will be there with bells on! Well, no actually I will be there with red shoes on! Gotta keep up my Wearing Red Shoes image and all. ;-)
If you would like to join us, click on the link below and then click "Buy Tickets" and your name will be added to the guest list at the event. If you cannot make it, no problem...there will be many more fun and exciting events in our future....
http://gaa.nationalmssociety.org/site/Calendar?view=Detail&id=158590
Saturday, April 19, 2008
Wearing Red Shoes
At a recent dinner party my dear friend Bob asked me,
"So why 'Wearing Red Shoes'? I mean, why is that your chosen blog name and now your Walk MS Team Name?"
And I thought, you know, I bet there are alot of people out there who don't know where Wearing Red Shoes comes from. Ok, maybe alot of you DO know, but it is a good story so here goes:
Once upon a time there was a little girl named Caroline.
For days...weeks...months, Little Caroline would watch her movie. Before long she could recite every line and sing every song. And then 3 year old Little Caroline decided her name would no longer suffice and she informed everyone she knew that her name was now Dorothy. But what mattered even more than the name were the Shoes. For YEARS to follow Little Caroline refused to wear any pair of shoes unless they were red. Red dress shoes, red sandals and flip flops, red sneakers...They all had to be RED.
Little Caroline dressed up as Dorothy for Halloween more times than anyone can count. She dressed up as Dorothy when it wasn't Halloween! When she was a little older her parents brought home a Cairn Terrier and they had of course named it Toto. Her favorite song of all time is still "Over the Rainbow". Her home is covered with Oz memorobilia. On her happiest days Oz has been there for her. On her darkest days it has been there too.
And when time or circumstance did not permit the watching of the actual movie, nothing made her feel closer to Oz than one of her pairs of red shoes.
"So why 'Wearing Red Shoes'? I mean, why is that your chosen blog name and now your Walk MS Team Name?"
And I thought, you know, I bet there are alot of people out there who don't know where Wearing Red Shoes comes from. Ok, maybe alot of you DO know, but it is a good story so here goes:
Once upon a time there was a little girl named Caroline.
When Little Caroline was 2 years old a movie came on television. Her parents debated whether or not this movie would be "appropriate" for a child her age. They worried certain parts might scare her. They did not know that Fate was stepping in that day bringing Little Caroline and her beloved 'The Wizard Of The Oz' together for the first time.
(And yes, she did refer to it with the extra 'The'...no one really knows why!)
She sat completely mezmerized until the credits began to roll and she asked to see it again. The asking continued for several days, until finally her parents went and bought Little Caroline her very own copy of 'The Wizard of the Oz'...on Betamax, no less!
For days...weeks...months, Little Caroline would watch her movie. Before long she could recite every line and sing every song. And then 3 year old Little Caroline decided her name would no longer suffice and she informed everyone she knew that her name was now Dorothy. But what mattered even more than the name were the Shoes. For YEARS to follow Little Caroline refused to wear any pair of shoes unless they were red. Red dress shoes, red sandals and flip flops, red sneakers...They all had to be RED.
Little Caroline dressed up as Dorothy for Halloween more times than anyone can count. She dressed up as Dorothy when it wasn't Halloween! When she was a little older her parents brought home a Cairn Terrier and they had of course named it Toto. Her favorite song of all time is still "Over the Rainbow". Her home is covered with Oz memorobilia. On her happiest days Oz has been there for her. On her darkest days it has been there too.
And when time or circumstance did not permit the watching of the actual movie, nothing made her feel closer to Oz than one of her pairs of red shoes.
My obsession with The Wizard Of Oz could fill the pages of blogs from here to eternity. The reasons I love its story, its myths and legends, its message and morals, its cast and music and so much more. But today we are talking about the shoes. There is something about a pair of red shoes that is truly magical.
Wearing Red Shoes makes you stand a little taller...
Wearing Red Shoes protects you from Wicked Witches...
Wearing Red Shoes can help you find your way home again...
Wearing Red Shoes can help you find your way home again...
Wearing Red Shoes just makes you feel like everything is going to be alright.
Thursday, April 17, 2008
Less than 48 hours to go...
until Walk Day!
I am so excited and pumped about all the money team Wearing Red Shoes has raised and I cannot wait to celebrate with everyone on Saturday! As of today, we have raised over $12,800!!! Holy cow!
I can hardly even believe how wonderfully generous people are. It amazes me.
Sunday we hosted our Red Shoe Spraying party and everyone's sneakers look Awesome. (Yes, Van...yours still look the best!)
It is supposed to rain Saturday morning, but the walk is Rain Or Shine so we will just be Singin and Walkin In the Rain.
Hmmm I hope that red spray paint was waterproof...otherwise we might leave a red paint trail in our wake!
Oh and our dear friends Casey & Jeff Banta in NC started their own MS fundraising team for the walk up there!
Their team name is Red Shoes Too! How cool is that? We are going national!!!!
Alright, signing off for now, BUT tomorrow I will be telling the story of how the name "Wearing Red Shoes" came to be...
So tune in tomorrow!
XOXO
I am so excited and pumped about all the money team Wearing Red Shoes has raised and I cannot wait to celebrate with everyone on Saturday! As of today, we have raised over $12,800!!! Holy cow!
I can hardly even believe how wonderfully generous people are. It amazes me.
Sunday we hosted our Red Shoe Spraying party and everyone's sneakers look Awesome. (Yes, Van...yours still look the best!)
It is supposed to rain Saturday morning, but the walk is Rain Or Shine so we will just be Singin and Walkin In the Rain.
Hmmm I hope that red spray paint was waterproof...otherwise we might leave a red paint trail in our wake!
Oh and our dear friends Casey & Jeff Banta in NC started their own MS fundraising team for the walk up there!
Their team name is Red Shoes Too! How cool is that? We are going national!!!!
Alright, signing off for now, BUT tomorrow I will be telling the story of how the name "Wearing Red Shoes" came to be...
So tune in tomorrow!
XOXO
Friday, April 11, 2008
Don't take it personally
So remember the Spoon Theory? Of course you read it, right?
Well unfortunately spoons also represent mental energy and emotional energy...I have always considered myself very good at communication, at keeping up correspondence and returning phone calls and emails.
I used to be very good at it.
Nowadays I have a lot of trouble keeping up with it all.
I forget that people have called me if I don't write it down.
My eyes don't work enough hours in the day for me to respond to all my emails.
Or I have a series of bad days where I am in a lot of pain and the thought of carrying on a normal conversation with anyone seems nearly impossible.
So please don't take it personally if you don't hear from me promptly.
I know how behind I am on my emails...and my phone calls...and hanging out with friends.
But I do the best I can on any given day.
That is all any of us can do, right? :-)
Well unfortunately spoons also represent mental energy and emotional energy...I have always considered myself very good at communication, at keeping up correspondence and returning phone calls and emails.
I used to be very good at it.
Nowadays I have a lot of trouble keeping up with it all.
I forget that people have called me if I don't write it down.
My eyes don't work enough hours in the day for me to respond to all my emails.
Or I have a series of bad days where I am in a lot of pain and the thought of carrying on a normal conversation with anyone seems nearly impossible.
So please don't take it personally if you don't hear from me promptly.
I know how behind I am on my emails...and my phone calls...and hanging out with friends.
But I do the best I can on any given day.
That is all any of us can do, right? :-)
Saturday, March 29, 2008
The Spoon Theory
One of the most frustrating things about this illness is that it shortens my days. A regular person gets, say 12, 14 waking hours to work, to play, to live and to love. Some days I feel like I get 4, maybe 6 hours where I can get anything done and therefore must plan each day accordingly.
I read a great story on patientslikeme.com (an online community for people with diseases like MS, Parkinsons, ALS, HIV/AIDS, etc) and I just had to put it on my blog:
The Spoon Theory:
My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college. Most of the time we spent talking about boys, music or trivial things that seemed very important at the time.We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation.
She then asked me out of the blue what it felt like to have MS and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS. She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn't walk another step, what else was there to know? I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers.
Then she looked at me with a face every sick person knows well...the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to me...having MS.
I glanced around the table for help or guidance, or at least to stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being affected, and give the emotions a person with MS goes through every day with clarity? I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand? If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the Spoon Theory was born. I quickly grabbed every spoon on the table. Hell, I grabbed spoons off other tables. I looked her in the eyes and said, "Here you go. You have MS." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to.
The healthy have the luxury of choice, a gift most people take for granted. Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions will have. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, in control.
I asked her to count the spoons. I explained that the spoons represented units of energy. When you are healthy you expect to have a never-ending supply of spoons. But when you have MS you have to plan your day and you need to know exactly how many spoons you are starting with. It doesn't guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started the game yet! I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS.
I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off. Showering cost her a spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn't want to scare her too much in the beginning. Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have MS...it's just not that easy.
I think she started to understand when she theoretically didn't even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your spoons are gone, They Are Gone. Sometimes you can borrow against tomorrow's spoons but just think how hard tomorrow will be with less spoons. I also needed to explain that a person who has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or a relapse or any number of things that could prove disabling. So you do not want to run low on spoons, because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn't have enough energy to do the dishes. If she went out to dinner, she might be too tired to drive home safely without having blurred vision. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can't do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, "Christine, how do you do it? Do you really do this everyday?" I answered that some days were worse than others and some days I have more spoons than most. But I can never make it go away and I can't ever for a minute forget about it. I handed her a spoon I had been holding in my pocket. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared."
The hardest thing I ever had to learn is to slow down and not to do everything. I fight this every day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my spoons.
Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don't have room to waste them, and I choose to spend this time with you."
Ever since this night, I have used the Spoon Theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory, they seem to understand me better, but I also think they look at their own life a little differently. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my spoons.
I read a great story on patientslikeme.com (an online community for people with diseases like MS, Parkinsons, ALS, HIV/AIDS, etc) and I just had to put it on my blog:
The Spoon Theory:
My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college. Most of the time we spent talking about boys, music or trivial things that seemed very important at the time.We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation.
She then asked me out of the blue what it felt like to have MS and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS. She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn't walk another step, what else was there to know? I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers.
Then she looked at me with a face every sick person knows well...the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to me...having MS.
I glanced around the table for help or guidance, or at least to stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being affected, and give the emotions a person with MS goes through every day with clarity? I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand? If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the Spoon Theory was born. I quickly grabbed every spoon on the table. Hell, I grabbed spoons off other tables. I looked her in the eyes and said, "Here you go. You have MS." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to.
The healthy have the luxury of choice, a gift most people take for granted. Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions will have. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, in control.
I asked her to count the spoons. I explained that the spoons represented units of energy. When you are healthy you expect to have a never-ending supply of spoons. But when you have MS you have to plan your day and you need to know exactly how many spoons you are starting with. It doesn't guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started the game yet! I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS.
I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off. Showering cost her a spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn't want to scare her too much in the beginning. Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have MS...it's just not that easy.
I think she started to understand when she theoretically didn't even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your spoons are gone, They Are Gone. Sometimes you can borrow against tomorrow's spoons but just think how hard tomorrow will be with less spoons. I also needed to explain that a person who has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or a relapse or any number of things that could prove disabling. So you do not want to run low on spoons, because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn't have enough energy to do the dishes. If she went out to dinner, she might be too tired to drive home safely without having blurred vision. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can't do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, "Christine, how do you do it? Do you really do this everyday?" I answered that some days were worse than others and some days I have more spoons than most. But I can never make it go away and I can't ever for a minute forget about it. I handed her a spoon I had been holding in my pocket. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared."
The hardest thing I ever had to learn is to slow down and not to do everything. I fight this every day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my spoons.
Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don't have room to waste them, and I choose to spend this time with you."
Ever since this night, I have used the Spoon Theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory, they seem to understand me better, but I also think they look at their own life a little differently. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my spoons.
Stable...yet Relapsing...
Quick blog from me:
Yesterday's appt at Shepherd went as well as could be expected. They showed us my MRI from last week and deemed it "stable". There was one little spot that looked slightly bigger than last time, but not enough to mean anything or cause concern from my doctors. Yay for good news!
As for the relapse I am currently fighting, it is just going to take some time. They said maybe even 6 weeks or longer to feel completely normal again (or as normal as a person with MS ever feels!) That made me kind of mad. 6 weeks is a long time to have vertigo and mind-splitting pain in your arms. So then we changed some of my dosage around for the bouquet of wacky pills I am on to manage this pain. (Sorry folks, no exciting opiates...just drugs that only work on people with nerve damage in their brains!) Then she gave me a Scopalomine patch to put behind my ear to see if it helps with the vertigo. Being able to drive again would be a huge help. I wasn't driving all that much anyway with my stupid vision, but it really stinks feeling too dizzy to even drive the 1/4 mile to the grocery store!
So that's where we are.
Patience is a virtue.
Slow and steady wins the race.
And when all else fails, chocolate really does make things better.
XOXO
Yesterday's appt at Shepherd went as well as could be expected. They showed us my MRI from last week and deemed it "stable". There was one little spot that looked slightly bigger than last time, but not enough to mean anything or cause concern from my doctors. Yay for good news!
As for the relapse I am currently fighting, it is just going to take some time. They said maybe even 6 weeks or longer to feel completely normal again (or as normal as a person with MS ever feels!) That made me kind of mad. 6 weeks is a long time to have vertigo and mind-splitting pain in your arms. So then we changed some of my dosage around for the bouquet of wacky pills I am on to manage this pain. (Sorry folks, no exciting opiates...just drugs that only work on people with nerve damage in their brains!) Then she gave me a Scopalomine patch to put behind my ear to see if it helps with the vertigo. Being able to drive again would be a huge help. I wasn't driving all that much anyway with my stupid vision, but it really stinks feeling too dizzy to even drive the 1/4 mile to the grocery store!
So that's where we are.
Patience is a virtue.
Slow and steady wins the race.
And when all else fails, chocolate really does make things better.
XOXO
Monday, March 24, 2008
Saturday, March 22, 2008
DNR?!?!
Ever since Friday morning this incident has been on my mind...
It was my first day of my IV Solu-Medrol infusion. The nurse arrived at our house, set up my IV and then we had to fill out the required pounds of paperwork. Questions range from things about my current symptoms to where am I on the pain scale to what is my official diagnosis, who is my doctor, etc etc. But then came a question that I was never expecting to hear...and it was a good thing I was sitting down. My nurse asks me,
"In the event that your heart stops and/or you stop breathing, do you want me to perform CPR?"
Chris was in the living room where he overheard this, looked up and proceeded to turn green as he ran over stuttering,
"Wha-Uh-Huh-Well-Wha??"
I managed to blink a few times and quickly spat out,
"Um, yes. Of course! I want CPR. I would like to live please."
Chris' color came back, my nurse circled Yes, and onto the next question...
But I could not stop thinking about that question on that form.
Sure, I understand if the patient is dying from terminal cancer and there is very left for the doctors to do and they are in immense pain. I understand it for people with ALS (Lou Gehrig's disease) which is also fatal, painful and increasingly devastating. They fill out a DNR order.
It is not an uncommon thing for terminally ill people, right?
But Multiple Sclerosis is not considered a fatal disease. Incurable, sure, but not fatal. So why is this nurse basically asking me if I want to be considered DNR?
That night as I layed in bed desperately wanting to go to sleep, but writhing in so much pain I was sure every nerve in both legs was dying or lit on fire...I thought, you know, I am dealing with excruciating pain for hopefully only a few days/weeks, and then *hopefully* it will go back to occasional/bearable pain. But what if I was an MS patient with constant excruciating pain? What if I was an MS patient who has lost use of both arms and legs? How much pain and disability would it take for someone to want to be DNR? What about the people that are essentially alone in their fight and don't have the support system I have (or the incredible team of doctors, nurses helping me through this journey)?
It really got me to thinking about something I heard recently: the suicide rate is 7.5 times higher for people living with MS than for the general population. There are many studies about this, and doctors debate whether it is the devastating symptoms of MS that lead people down this path OR if the intense depression often cause by Interferon (the leading treatment for MS) is the culprit OR if the depression is a direct symptom of the MS, caused by dymelination in the brain. It is enough to make anyone dizzy just thinking about it.
Now listen up people: Don't worry- this is NOT a cry for help. I have NO plans to off myself in any way, shape or form. I have so many doctors constantly assessing me for even the least little sign of serious depression. Apparently with Interferon you can be fine one day, then BAM! depression kicks in violently and without reprieve. It is why alot of people cannot tolerate these drugs. Many neurologists recommend adding an anti-depressant as a preventative measure as soon as you start taking Interferon. And on the really bad days when your body is searing with pain and walking around your own house is a great effort, falling into a deep depression might seem like a logical, even comforting choice. But that's just not my style. ;-)
I am pretty strong-willed and I think it would take a whole hell of a lot for me to ever consider something like a DNR order. And when I feel my absolute worst, here is what I do:
- I call friends and family and ask for help, be it taking me to the movies, making dinner, bringing over ice cream or sending Hallmark cards. I let people in to care for me, so I don't feel so alone.
- I get fired up about my MS fundraising. I send emails and thank you notes to supporters and solicit more supporters and I get my team fired up about walking in their red shoes!
- I write on my blog, which has been invaluable as a place to let out my thoughts and feelings, to work through them all and find peace with this crazy disease and this crazy world.
DNR? Hell. No. I've got a LOT of living to do....
It was my first day of my IV Solu-Medrol infusion. The nurse arrived at our house, set up my IV and then we had to fill out the required pounds of paperwork. Questions range from things about my current symptoms to where am I on the pain scale to what is my official diagnosis, who is my doctor, etc etc. But then came a question that I was never expecting to hear...and it was a good thing I was sitting down. My nurse asks me,
"In the event that your heart stops and/or you stop breathing, do you want me to perform CPR?"
Chris was in the living room where he overheard this, looked up and proceeded to turn green as he ran over stuttering,
"Wha-Uh-Huh-Well-Wha??"
I managed to blink a few times and quickly spat out,
"Um, yes. Of course! I want CPR. I would like to live please."
Chris' color came back, my nurse circled Yes, and onto the next question...
But I could not stop thinking about that question on that form.
Sure, I understand if the patient is dying from terminal cancer and there is very left for the doctors to do and they are in immense pain. I understand it for people with ALS (Lou Gehrig's disease) which is also fatal, painful and increasingly devastating. They fill out a DNR order.
It is not an uncommon thing for terminally ill people, right?
But Multiple Sclerosis is not considered a fatal disease. Incurable, sure, but not fatal. So why is this nurse basically asking me if I want to be considered DNR?
That night as I layed in bed desperately wanting to go to sleep, but writhing in so much pain I was sure every nerve in both legs was dying or lit on fire...I thought, you know, I am dealing with excruciating pain for hopefully only a few days/weeks, and then *hopefully* it will go back to occasional/bearable pain. But what if I was an MS patient with constant excruciating pain? What if I was an MS patient who has lost use of both arms and legs? How much pain and disability would it take for someone to want to be DNR? What about the people that are essentially alone in their fight and don't have the support system I have (or the incredible team of doctors, nurses helping me through this journey)?
It really got me to thinking about something I heard recently: the suicide rate is 7.5 times higher for people living with MS than for the general population. There are many studies about this, and doctors debate whether it is the devastating symptoms of MS that lead people down this path OR if the intense depression often cause by Interferon (the leading treatment for MS) is the culprit OR if the depression is a direct symptom of the MS, caused by dymelination in the brain. It is enough to make anyone dizzy just thinking about it.
Now listen up people: Don't worry- this is NOT a cry for help. I have NO plans to off myself in any way, shape or form. I have so many doctors constantly assessing me for even the least little sign of serious depression. Apparently with Interferon you can be fine one day, then BAM! depression kicks in violently and without reprieve. It is why alot of people cannot tolerate these drugs. Many neurologists recommend adding an anti-depressant as a preventative measure as soon as you start taking Interferon. And on the really bad days when your body is searing with pain and walking around your own house is a great effort, falling into a deep depression might seem like a logical, even comforting choice. But that's just not my style. ;-)
I am pretty strong-willed and I think it would take a whole hell of a lot for me to ever consider something like a DNR order. And when I feel my absolute worst, here is what I do:
- I call friends and family and ask for help, be it taking me to the movies, making dinner, bringing over ice cream or sending Hallmark cards. I let people in to care for me, so I don't feel so alone.
- I get fired up about my MS fundraising. I send emails and thank you notes to supporters and solicit more supporters and I get my team fired up about walking in their red shoes!
- I write on my blog, which has been invaluable as a place to let out my thoughts and feelings, to work through them all and find peace with this crazy disease and this crazy world.
DNR? Hell. No. I've got a LOT of living to do....
Friday, March 21, 2008
I'm Not Drunk...I Have MS!
Well according to the lovely people at Shepherd Spinal Center I am having a "relapse". We did the MRI (will probably get results next week) and started me on a 3 day course of IV Solu-Medrol. Not fun, but necessary if I want to end this relapse as quickly as possible.
So after my IV yesterday I was dying to get out the house. I covered my tubes up with this cool Michael-Jackson-circa-1985 sleeve thing (if only it were silver!) and our friends Steven & Tiffany picked us up to go grab a sandwich and see a movie.
My vertigo and numbness in my feet had gotten significantly worse yesterday so I was being extra careful to hold on to people, walls, etc so as not to take a nasty fall and add to my medical drama! So we are walking into the movie theater, Chris is holding popcorn & twizzlers, Steven is holding drinks and Tiffany is holding me. I was leaning pretty heavily on her and stumbled a few times as we walked towards our seats. We passed this older gentlemen on his way back out for popcorn or something...and then we all heard this quite audible, "Hmmmph". Not only was it loud enough for us to hear, it was quite disapproving. We all quickly came to the same conclusion:
This man thinks I am conpletely drunk.
He thinks I am so drunk I cannot even stand up on my own and my friends are dragging me to the movies in hopes of sobering me up with some popcorn.
And frankly, if I had seen me stumbling to my seat, hanging onto Tiffany for dear life, I probably would have thought I was drunk, too!
So it was this huge realization for me...when in the middle of an ass-kicking relapse where I look fairly intoxicated, I have 3 choices:
1. Rely on my family and friends and literally lean on them to get around places and inevitably have strangers and small children think I am the Town Drunk.
2. Use some sort of mobility assistance device; a cane or walking stick and have strangers and small children realize I am...Disabled.
3. Wear my "I'm not Drunk...I Have MS" tshirt (yes I do own one!) and share the fact the I am disability and sick sense of humor with everyone I meet.
While 3 is possibly my favorite, you have to be in the right mood to pull it off. I wore it to my appt at Shepherd and people went nuts for it, laughing and nodding with approval.
In all honesty I dont particularly care if people think I am drunk...though there were a gaggle of tween girls there last night and I felt as if I was setting a poor example for them.
So if I decide to use a cane or walking stick during these bad days, I will have to do a bit of pride swallowing, but i also am showing the world that it is ok to be "disabled" and need help and I am still every bit just as fabulous and Not drunk!
It will take some experimenting for sure. And hopefully I will be back to my non-vertigo self soon and able to walk straight on my own!
In the meantime, Happy Easter to everyone!
If you have adorable children, I expect pictures to be emailed of easter egg hunts, and kids all dressed up looking precious!
XOXO
So after my IV yesterday I was dying to get out the house. I covered my tubes up with this cool Michael-Jackson-circa-1985 sleeve thing (if only it were silver!) and our friends Steven & Tiffany picked us up to go grab a sandwich and see a movie.
My vertigo and numbness in my feet had gotten significantly worse yesterday so I was being extra careful to hold on to people, walls, etc so as not to take a nasty fall and add to my medical drama! So we are walking into the movie theater, Chris is holding popcorn & twizzlers, Steven is holding drinks and Tiffany is holding me. I was leaning pretty heavily on her and stumbled a few times as we walked towards our seats. We passed this older gentlemen on his way back out for popcorn or something...and then we all heard this quite audible, "Hmmmph". Not only was it loud enough for us to hear, it was quite disapproving. We all quickly came to the same conclusion:
This man thinks I am conpletely drunk.
He thinks I am so drunk I cannot even stand up on my own and my friends are dragging me to the movies in hopes of sobering me up with some popcorn.
And frankly, if I had seen me stumbling to my seat, hanging onto Tiffany for dear life, I probably would have thought I was drunk, too!
So it was this huge realization for me...when in the middle of an ass-kicking relapse where I look fairly intoxicated, I have 3 choices:
1. Rely on my family and friends and literally lean on them to get around places and inevitably have strangers and small children think I am the Town Drunk.
2. Use some sort of mobility assistance device; a cane or walking stick and have strangers and small children realize I am...Disabled.
3. Wear my "I'm not Drunk...I Have MS" tshirt (yes I do own one!) and share the fact the I am disability and sick sense of humor with everyone I meet.
While 3 is possibly my favorite, you have to be in the right mood to pull it off. I wore it to my appt at Shepherd and people went nuts for it, laughing and nodding with approval.
In all honesty I dont particularly care if people think I am drunk...though there were a gaggle of tween girls there last night and I felt as if I was setting a poor example for them.
So if I decide to use a cane or walking stick during these bad days, I will have to do a bit of pride swallowing, but i also am showing the world that it is ok to be "disabled" and need help and I am still every bit just as fabulous and Not drunk!
It will take some experimenting for sure. And hopefully I will be back to my non-vertigo self soon and able to walk straight on my own!
In the meantime, Happy Easter to everyone!
If you have adorable children, I expect pictures to be emailed of easter egg hunts, and kids all dressed up looking precious!
XOXO
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