Saturday, February 26, 2011

Me vs Just Dance 2...

I failed miserably at cutting back on the caffeine and sugar this week.  I did have some moments of victory, but it's been a pretty rough week.  There was no "falling off the wagon", I was pushed, plain and simple.  You know how it plays out...I did one of those, "I'll get focused on it Friday.  (Friday comes and goes)  I'll start Saturday, I won't make a pot of coffee.  (today comes and I make 10 cups and drink half the pot, one cupful after the next)".  So I'll try  Monday.  Yeah.  Monday.

Being that I had 5 cups of coffee in about 30 minutes' time, I had an overabundance of raw energy.  I swirled around the yard, a la Tasmanian Devil, dragging all of the wind blown tree limbs and branches into the woods.  I then attacked the kitchen, making a meal for tomorrow's church fellowship.  'Load of laundry' here, 'shake some Comet around the bathroom and scrub' there...and the game beckoned. 

Today's choice?  Baby Girl - Reggaeton.

Beat my all-time high score on the first try!  Try again, Just Dance 2! 

That head swirl?  I do a lesser version of that without music  :::thank you, ms:::!  I couldn't help but yell out, "UH OOOOOOOH!  NO THEY DIDN'T!" when I got to about :43 in this video, which drew my kids downstairs in curiosity.  Even this old, stiff, hole-filled gal busted out a "PERFECT!" on said move, first time through!  That cracked my kids up and they began to cheer, "GO MOMMY!"...with hands in the air... 

I was losing feeling in my feet and my vision was slightly blurry by the end, but with that high of a score?  Feeling and visual clarity were unimportant!  But I'll tell you...once I cool down a bit, I'm trying again.  Shooting for the 9000's this time!  Hope my husband doesn't walk in from work during my attempt.  He might walk right back out...

Thursday, February 24, 2011

Some Studies Make Me Smile :-)

I found this one posted today:

Warmer Weather Hampers Thinking Skills in People with MS

40 people with MS and 40 people without MS were given tests that measured learning, memory, and the speed at which they processed information. Those people with MS also underwent brain scans. The daily temperature on the days the tests were taken was also recorded.

The study found that people with MS scored 70 percent better on thinking tests during cooler days compared to warmer days of the year. There was no link between thinking test scores and temperature for those without MS. 

FOUL!  I'm calling a foul here... 

Clearly, these folks were unable to escape the room in order to make a Dunkin' run for a vanilla bean/coffee swirl coolatta or caramel iced latte with sugar and whipped cream.  Because had they been able to, they would've eclipsed those "sans ms" folks.  And that is so not fair.  In fact, I find it inhumane!  Of course we won't perform well if you restrict us from employing our coping strategies!  What if I asked the researchers to write their findings, but I didn't allow them the use of a pen?  Or paper?  Same thing.  Take away our body temperature modifiers and we're...:::yawn, is it hot in here?:::we're...(one 'missippi', two 'missippi') wait...what was I saying? 

I believe the researchers were afraid of the ms'ers.  Because they would have had to include the following statement:  "After a trip to Dunkin' Donuts and consumption of assorted iced sugary caffeinated beverages, an uncanny trend became apparent.  The participants with ms outscored those without ms by upwards of 80 percent.  I don't know about you, but when I'm chilled out at my desk with an iced Dunkin' delicacy?  I'm like Watson on Jeopardy.  Maybe just a tad faster. 

I'm sorry, researchers...but who was the biller the clinic provided a dual monitor system to, because her computer wasn't working as quickly as she could?  You're lookin' at her!  Whose trash can was overflowing nightly with empty plastic cups of iced lattes, frappes, coffees, and coolattas?  Guilty as charged.  Watson, baby.  Watson...

Wednesday, February 23, 2011

Hot n Cold

Literally.  I'm fah-reeeeezing!  Well.  Only at night.  Wait.  And first thing in the morning.  During the day at work?  I'm hot.  It was 14 degrees this morning, yet I was unphased on my walk to my car...sans jacket.  Up and down goes my body temperature. 

I typically do have ice block hands and feet.  I use my husband as a warmer, which he frowns upon.  He yells out, "would you go to the doctor!  My goodness, woman!  You have no circulation in your body!"  Oh I know he didn't go and call me "woman".  He may want to be more selective in his noun choice when referring to me, on account of how my temperature isn't the only thing about me that's up and down.  There's my emotions, afterall...which can best be metaphorically represented by the roller coaster, Kingda Ka;-)  Invisible symptoms are closer than they appear in mirror...

I blame ms, but ms says, "what if it's not all about me?"

So I humored ms by spending yet another insomniac night online, reading way too much about my most significant symptoms of fatigue, tremors, body temperature issues, and bladder woes.  And you know what I found?  Stuff like "low blood sugar" and "excess caffeine" and "high sugar intake".  Hmph.  I was dx'd with hypoglycemia waaaay back.  Never thought much of it.

When I say in my profile that I "run on Dunkin'", I'm not kidding.  I measure my sugar by depth, not packet or teaspoonful.  Throughout my day, I'm Dunkin', I'm snacking on dark chocolate, I'm reaching for a Coke and some other sugary thing.  Caffeine and sugar make my mind feel happy.  And then I crash, requiring more.  Enter Kingda Ka...form of:  interchangeable fatigue/energy rush, body temperature ups and downs, emotional highs and lows.  Add to that a head/neck tremor for good measure.

After all that reading and a healthy amount of prayer - because really, I mess everything up when I do it on my own - I was convinced that I should eliminate caffeine and sugar from my diet.  Back in 2006, I made a very sudden and drastic dietary change which resulted in an 80lb weight loss and significant reduction in overall symptoms.  If cutting out caffeine and refined sugar could potentially result in less fatigue, a more level emotional playing field, less trips to the bathroom, and a somewhat normal body temp?  I'm going all in.

I went off of all caffeine and refined sugar - cold turkey.  For 24hrs.  Clearly, I underestimated the power of coffee.  And sugar.

When a dear friend wanted to get together late last night for some conversation, approx 24hrs post coffee and refined sugar, I was reduced to a collection of gelatinous material, uncomfortable in my very skin, feeling as if I was one wooden piece away from systemic Jenga.  We met up at a diner and I ordered a cup of coffee, because I couldn't not.  It was speaking to me, and it was right.  It never tasted so good.  So good, in fact, that I asked my friend, who was mid-sentence, to pause her speech so that I could close my eyes, tap the mug in appreciation with both hands, and enjoy the ride.   

I will eventually eliminate these two staples from my diet and sincerely hope to notice some improvements.  But if significant strides are not made?  I'm so running back to you, coffee...

This is me...respecting the mug!

Saturday, February 19, 2011

Just Dance

My son was invited to a birthday party last night for Pretty/Stylish Friend's son.  Wouldn't you know...they were playing Just Dance 2 on the Wii.  You all may remember what I said about music and how I simply cannot turn down the opportunity to dance.

Pretty/Stylish Friend: "C'mon, know you want to."
Me: "no no...I can't"
PSF: "C'mon"
Me: "nah"
PSF: "ya know ya wanna..."
Me, later: "oh alright."

As I stood, I found that I was unable to bend at the waist, my knees were locked at a 120 degree angle and my eyes were arguing with one another as to which one would focus on the tv screen.  For some reason, they aren't playing well with one another lately.  Lots of ego going on between them.

This was my song of choice...many thanks to youtube for having a video.  Who knew?

Despite stiffness, tremors, and fatigue...I had the high score.  My son ran to me with excitement as I turned the remote over to the next 25yr younger player.  He ran to me, gave me a double high five and said, "HIGH SCORE, MOMMY!  :::pointing at me with both hands::: THAT just happened!"  He's always been my "cheering section of one".  And I'm his.  A word of advice, don't sit next to me at his hockey games.   

I've decided to seek out the cheapest Just Dance game that very little money can buy so that I can make a complete fool of myself in the comfort of my own home.  Then again, if I dance and no one is home to see it...have I made a fool of myself?  It's like the "if a tree falls in the woods" saying.  Wait.  What if I fall and no one's, guess that means I wouldn't make a sound. 

I know I was looking to see what tasks in my life I might cut so as to preserve energy and all?  But I can justify this by calling it exercise!

...I should probably go all in and get myself a matching outfit and sunglasses as well.  Just sayin'.

Friday, February 18, 2011

Get Behind Me, Fatigue...

Blame it on the moon, but I've really been in deep thought lately.  Fatigue.  Exhaustion.  Label it what you wish, it's all the same.  But it's got me thinking...

Things exhaust me now that didn't used to.  I mean...even the thought of certain things exhaust me.  Greater than 10 emails in my inbox exhausts me.  Walking into a messy house exhausts me, as does the prospect of straightening it.  The 800 number of the bill collector du jour that pops up on my phone exhausts me.  The monkey wrench thrown into my plans exhausts me...and in my line of work and household, there is an abundance of monkey wrenches.  See the pattern, here?

I've made some adjustments over the past several months in the hopes that I'd feel more energetic and lively.

I cut my hours back from 50+ per week to 40.  The benefit I've found in it is that I'm able to get to Thursday before I'm completely wiped out, whereas I used to only make it until Wednesday.  See, I give my whole self in my work.  By the time the clock strikes 4pm, I've left it all on the table.  I've always worked like that and wouldn't know how to do it any other way.  When I walk in the house, I don't feel as if I have much left for those I love with my whole heart. 

My kids have only ever known me with ms.  As toddlers, they spent many an afternoon locked safely in my baby-proofed bedroom with me, toys galore to play with, and quietly played or napped alongside me.  They're now 13 and 11.  When they notice me looking more like Raggedy Ann than myself, they'll ask if I need a nap.  I say no.  They ask if I'd like to watch tv with them.  I say yes, but usually end up drifting off to sleep.  Some time later, I wake up with a blanket draped over me.  I apologize to them, they say it's okay.  And it's genuine.  Nowhere in their little hearts do they feel cheated, or disappointed, or saddened, because this is their normal.  My "mom guilt" says they would have to...but they truly do not.  Thank you, Lord, for these kids.  

My household duties are unforgiving.  Dishes cascade out of the sink, attempting to throw themselves onto the floor.  The laundry pile stares me straight in the eye, because that's how high it is...and mocks me.  It dares me to carry it down the stairs in baskets.  Instead, I drag the 5' high stacked basket to the very top of the stairs and give it a shove.  Land where you will, socks, undergarments, and towels.  I really don't care anymore.  You're all getting bleached anyway!  Later, when my husband returns from a hard day's work and sees the leftover carnage of a stray sock or wash cloth, he'll say, "I could've carried that down to the laundry room for you, honey."  In my mind I say, "if you meant that, you would've done it already...honey."  Instinctively, he says something like, "well, I mean I would've done it if you'd have asked me to.  You know I don't do things on my own."  True that.  Thank you, Lord, for this crazy husband.

Just another one of those invisible symptoms, perhaps one of the most difficult to push through without being noticed.  And it's not that I don't pump my Blood Caffeine Level up to a solid's just that coffee only has so much power.  Thank you, Lord, for Dunkin' Donuts.

Admittedly, I'm feeling like fatigue is kicking my tail.  So what I'm going to do is follow the advice of the article in MS Focus by journaling the things I do in a day and using the "drawer system".  I just hope this drawer system isn't like my drawers at home.  They're all empty.  The clean and folded clothes don't usually make it from the baskets to the drawers.  Takes energy, ya know.  And my thing is...if I'm taking it from that basket, wearing it, and tossing it into another basket?  Stacking it in a drawer is just a waste of my time.  Right?  So yeah, the "drawer method".  Let's give that a whirl!  Like dear friend/chiropractor always said..."what could happen???" 

I'll let you know, especially if the drawers fall on top of me.  'Cause that's something that can happen!

Wednesday, February 16, 2011

We've Been Published! Thanks, MS Focus:-)

Friends, we've been published in the Winter 2011 issue of MS  Focus!  Yes, "we"!  You and me and us...our spouses, our caregivers, our families and friends...and I want to celebrate it with you!  Because we're all in this together. 

Prayerfully, someone will be blessed along the way.  Hopefully, someone who recently heard those two, lowercase letters come out of their doctor's mouth, or may have read it in a report bearing their demographics at the top, will see that life can still be lived to the fullest.  Or maybe someone who's come to the point of really having their fill of ms will be uplifted. 

Because that's what you do for me...

I sit here and unload my experiences with ms and you chat back.  I read the writings of others living with ms and learn new ways to combat the facets of the condition that I struggle with on a daily or frequent basis.  My dear friend/chiropractor once told me..."T, it's about 'quality of life'."  She's right, you know.  I hear her words play over and over again in my mind.  Living with ms, for me, is truly a continual process of seeking to improve my quality of life.  Not in a selfish, "it's all about me and I want to feel good all the time" manner...more in an, "I want to be every ounce of the wife and mother and granddaughter and daughter my family deserves for me to be, the friend my friends need me to be, the worker my employers ask me to be, and the servant that God intended me to be" manner.  And you help me along on that road to "be".  So thanks.  Seriously:-)

I do have to sit back and wonder, as I read the published article...the one which I closed with a thought about panty that seriously in a magazine with my name attached to it?  There's some solid proof that I don't write with any ounce of pride or self involved!  Embarrassing?  Highly!  But then again...that's a taste of life with ms!  All we can do is laugh at it.  Or you can laugh at me, 'cause I'm okay with that.  Either way...

Be well, friends:-)

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.

Friday, February 11, 2011

Energy Bank In Overdraft

I remember seeing the term "Energy Bank" in the first ever ms magazine I received.  Though I don't exactly recall the article, seeing as how that was 12yrs ago or so, I do remember how easy they made it all sound.  The theme was...master your energy bank, master your life. 

The majority of ms'ers must be different than I am, because not only does my energy bank fluctuate by the hour of the day, making it about as easy to manage as a nest of yellowjackets...but I've got 3 energy bank "accounts".  A physical account, an emotional account, and a mental account.  And they're all checking, not savings.  You get the point.

My husband and I used to have the "what's more tiring?  Physical work or mental work?" discussion.  I've come to realize that there are times in which all of it is to me.  And it's not just work, as in paycheck earning work.  It's any kind of work.  And by any kind of work, I don't just mean kinesthetics.  I'm talking anything that requires me to move or think.  Act or speak.  Perform or plan.  Anything from working a task through to being everything that people need me to be.   

Because it's "invisible", people cannot understand.  I can't always jump through the hoop with grace.  Sometimes, I just want to kick the hoop.  This week is a "kick the hoop" kind of week.  If only it were so easy. 

What is easy at times is to feel sorry for myself.  I allow myself to think, "why can't I need something for once, instead of always being needed?" or "why do I always have to be the one to do such-and-such?" or "why can't I get some help for once?"  And, if I don't notice the dangerous path of those thoughts, I can get sucked in pretty quickly.  Because once I get sucked in?  I'm way too busy focusing on myself...and that causes me to take my eyes off the Lord.

My energy bank is currently in overdraft, but there is hope.  See, I receive a direct deposit each week called "Saturday".  That's the day I get to have the house to myself with my children to do things like play loud music, cook up some breakfast, talk and laugh, watch the food channel, and attend my son's hockey games with fellow hockey moms/dear friends in the evenings.  I then receive a bonus entitled "Sunday".  Time with my whole family, worship, and enjoying whatever sporting events happen to be on.  That can usually put my 3 accounts into a state of abundance in short order!

Take that, hoop... 

Friday, February 4, 2011

"Enjoy the time you have..."

I got a call today from the Nurse Manager overseeing my grandmother's care.  She was calling to say that my grandmother was resting comfortably and in good spirits after receiving her 4th PIC line in a year's time.  A new infection cropped up.  And because I am who I am, with just enough medical knowledge to give myself an ulcer, I had to ask her a question.  In fact, I ask a question every time she calls me.  Keep in mind, this woman is hysterical and loves to harass me.  The exchange went something like this.

me:  "wait...can I ask a question?"
her:  "ugh...yes, go ahead."
me:  "so will this infection cause the dormant staph to flare back up again?  Because with all she's been through, I don't think she could..."
(((She interrupted me)))
her:  "hey listen, what did I tell you yesterday?  We take this one day at a time.  Right?"
me, looking down at the floor in tears, thankful she couldn't see me:  "yeah"
her:  "Tina, enjoy the time you have with her and don't overthink things.  None of us knows what'll happen tomorrow.  You know all about that.  Worrying is just gonna send you into a flare."

How'd she know that tidbit, you ask?  She also has ms.

We all know she's right.  Because one minute, you're living life.  And the next?  You find yourself in an MRI tube with giant earplugs stuffed into your ears, a needle in your arm, GAD running through your body, a stifling, plastic collar touching your throat (but don't swallow!), and a silly, plastic, hockey mask-looking apparatus over your face.  And if "you" were me, you laid there praying it wasn't something worse than those two, lower case letters. 

MS definitely changed the way I live my life.  Sure, it's slowed me down.  I quickly learned the term "energy bank" and am better learning how to "budget" that.  I wouldn't say I worry about tomorrow, but 20yrs from now?  Eh, occasionally.

Sure, those are the negatives...but it's also taught me some very valuable lessons.  I feel like I appreciate things more now than I used to.  I take less for granted.  I will be late to your party, because I've stopped to photograph a beautiful sky.  I will be late for work or some other obligation, because I've taken the opportunity to talk with a friend I've run into, or someone I've come across in passing who looks like they may need encouragement.  I give praise to God, because I have a family and a boss that fully understand this of me.  I also give praise, because for as crappy as ms is, it does have its way of keeping me close to the Lord.  Without it, I'd be off on my own, thinking I was in full control of my life, making a mess of things.  Okay, so there may be times I still do that...but I'm quickly reminded of the err of my ways!

The more I think about it, it really does simplify life when I focus on her words.  And it's not like I've never heard a similar phrase before, but it hit me differently today for some reason.  Maybe it was because she was playfully yelling at me, or maybe it's because she also has ms and we communicate telepathically?  Either way, it was a good reminder.

Who of you by worrying can add a single hour to his life? - Matthew 6:27

Tuesday, February 1, 2011

Keep It Down!

While I wasn't worried about what ms would throw my way today, the official Day 2 of new flare, I'd be fibbing if I were to say I wasn't just a bit curious. 

I awoke around 5am, performed full ms inventory, and found all systems functioning at nearly 90%.  Just some minor shaking on the right side.  Hmm.  I wondered if ms had decided to take it easy on me today...or if it was hiding behind a piece of furniture, covering it's face, giggling.  Come out come out wherever you are, ms! 

I started a pot of coffee and comfortably situated myself at Headquarters.  Headquarters is my computer desk, complete with stack of unopened bills and at least one cat awaiting my arrival.  Great battles are fought at Headquarters, particularly on Friday mornings (pay day).  The house was dark and quiet.  Still no sign of ms.

My husband awoke and crashed down the stairs.  He flicked on the lights, which made me feel like I was on the 50yd line in a stadium.  He yelled, "GOOD MORNING, HONEY!", poured himself a bowl of extremely crunchy cereal and splashed what sounded like a waterfall of milk over it.  Every bite he took went through my left ear like a wood splitter.  I shot him a look and he was all, "what?"  I responded with, "REALLY???"  He looked back, completely confused.  Ooooooh now I get it.  Extreme noise sensitivity.  My husband hadn't crashed down the stairs, or chose rocks for breakfast, or poured milk into his bowl from the top of the roof afterall.  I woke up bionic.  MS seemingly appeared from behind the sofa..."SURPRISE!"

MS, you spoil me.

I've been more sensitive to noise post diagnosis than pre.  For example, the gym teacher at school has a WHISTLE.  It is fully capitalized, because it is that loud.  Listen, I've played sports at all levels, from childhood to school to college, and never heard a whistle of similar frequency.  I've often wondered if it's custom made.  Because as I'm making my way through the gym area to my classroom and it sounds off?  My legs will actually buckle.  And my mood?  Well, suffice to say it makes me want to rip a cinder block right out of the wall with my bare hands and smash said WHISTLE with it.  So yeah.  Noises.  Not typically every noise, just those with certain frequencies.

Today, it's nearly every noise.  And today, there's an unhealthy serving of nerve pain across that ear, reaching down into my face.  And today, when a shrill noise occurred with repetition (like my husband's two-way work phone?  Chirping and bleeping?), it actually created a sensation of nausea within me.

On this snow day, my beloved husband is off to a neighboring state for work.  I cannot hear him chewing, stomping, or chirping 4 hours away.  My children are listening to peaceful, Christian music as they play their favorite video game.  All of the dogs are sleeping.  And I'm heading back to bed.  Best thing I've found to combat sensory overload flare?  A bunched up blanket, pushed up against sensitive ear.  And sleep.  Lots of sleep.  So this is me...dragging my fleece blanket behind me like Linus, retreating to the land of quiet, hoping that ms quickly tires of its latest trickery. 

That's right, Linus...cover the left ear, sweetie...I understand.