Thursday, December 29, 2011

What A Week... :-)

This week has been one of the best.  Ever.

Entire days with my kids...more time with my husband...Christmas with my cousins and my grandmother...meals out with girlfriends, some of whom I haven't seen in as many as 6 years...plenty of towels in the bathroom closet...homemade meals for my family...desserts baked for my friends:-)

As the week comes to a close, I find myself wishing I could somehow grab hold of time and slow it down just a bit.  I realized, after tripping over my daughter's sneakers, that she has grown.  She'll soon turn 14.  You've got to be kidding me.  As for my son, well...he's just funny.  I took him out this morning to choose a birthday card for a friend.  I had to back into a parking space, due to construction in the lot.  As I put the car in reverse, he said, "oh here we go".  

I'll have you know I only hit the curb once.

See, I am completely fine with driving.  It's parking lots that get me, and do you know why?  Because parking lots are not reality, people.  In any case, we walked through the lot, laughing together about my parking lot shenanigans.  He was nearly hysterical when he said, "remember when you drove right over that concrete parking stop?  Oh my goodness that was funny!"

Yeah yeah...whatever :-)

I can't help but be overwhelmed by the absolute joy and blessing of this week.  What a gift it's been.  What a gift every moment truly is.  While I don't want it to end, I know that I'd miss out on everything the Lord has in store for me...for us...if I did somehow find that 'Father Time' guy and put him into a submission hold.

Relax, kind sir.  You're safe.  While I have thoroughly enjoyed this week, I know that the Lord's best is ahead of me.  And I look forward to that :-)

Tuesday, December 27, 2011

Experiences Are Golden!

I love experiencing life.

Mind you, I'm not the kind of girl you'll find trying to ride a bicycle for distance or run a half marathon.  I don't climb stuff.  I don't ride roller coasters or bungee jump.  Why?  Well, it's not because I wouldn't want's more because those are things I'm simply unable to do.  I'm not a Weeble.  Oh who am I kidding?  I didn't do those things when I did have the ability.

Experiences.  They're important to me.  What do I call an 'experience'?  Seeing the beauty of the sky.  Hearing my kids laugh so hard they snort.  Admiring my husband as he leads our family in prayer.   Cheering for my daughter as she crosses the finish line.  Tearing up as my son scores a goal.  Laughing with friends.  Chasing the basset hound after he's snagged a piece of food from my plate.  Stuff like that.

Admittedly, people find me a little strange for the amount of importance I place on experiences.

For example, I've been shamelessly harassing my mother about taking me to the Flyers/Rangers Alumni game that's fast approaching.  My Dad wondered why I would want to sit outside to watch an ice hockey game, one in which no one cared about winning, between guys who haven't played in forever, some being his age?


I've been busy attempting to schedule breakfasts, dinners, and coffee outings with my girlfriends while I have the week off from school.  I'm positive I sounded desperate when I excitedly said to one of my dearest girlfriends, "let me know if you want to get together this week!"  This, after we had just finished up a fantastic dinner.  I'm sure she wondered why I would be so overly eager.


I earned odd stares from my husband today when I asked him if he wanted to come along with me to the grocery store, since he also had the day off.  He wondered why I wanted his company on an adventure that I typically attack in a solo fashion.


And last but not least, I embarrassed a friend at the mall this week, because I had casually asked her if she'd like an Orange Julius.  When she responded that she'd never had one, I yelled out...


I immediately rushed to the stand and purchased one.  Her life may not have been forever changed by our enjoyment of the Orange Julii, but I'd like to think her evening may have been just a bit brighter.  Mine was, because of the time I was able to spend with her.  As well as the jovial harassment :-)

While I could never be thankful for ms, maybe I am somewhat thankful for the way it has changed my priorities and overall outlook.  I don't mind being thought of as just a little strange.  I don't mind that some people don't quite 'get' me, be it my humor or my willingness to share with them exactly how much I value them.  And if part of that is earned by insisting that a friend try an Orange Julius, then so be it.

Something that ms has taught me over the years's all about experiences:-)

Monday, December 26, 2011

Stay At Home Me

As I sip my coffee and finish this last bite of egg prior to heading into school for a short bit of work with a student, I find myself thinking the following thought:

I could so be a stay-at-home mother.

Um...let me make some valuable disclaimers after such a statement!  I love my work, I love the fact that I'm able to work, I love my students, and I love to feel as if I'm doing the Lord's work in serving them and their families.  I also need a paycheck.

But yeah.  I could so be a stay-at-home mother.

I know this, because of the fact that I work at a school and have 'summers off'.  'Summers off' means that I pick up jobs over the summer with other employers and I take training courses for my school job, but the hours are less than I'm used to working.  There are a few shorter breaks sprinkled along the course of the year, such as this Christmas break.  Christmas break is my favorite:-)

What do I do with my extra time when I'm not working?  Some form of exercise each and every day.  I care for my household.  Socks and underwear for everyone!  I watch Maury and know that none of those guests are the father.  None of them.  I cook meals on a nightly basis.  I spend more time in the Word, which helps me to not fall into the 'depressed, lonely, sad' pit of lies.  Most of all...I give my all to my kids and my husband.  They are my greatest blessings and always will be.  I'm not too tired.  For pretty much anything.  Basically...

I'm focused on the bigger picture.  My spirit feels content.  My mind feels quick and spry.  My legs feel good.

I. Feel. Good.

I could be this lady.  Wait.  Do you think she's watching Maury?  Doesn't her reaction shot look a little like when they've opened the 7th envelope of denial?  It's not just me who sees it, right?

Hi ho, hi's off to work I back to jump (ok, it's more like a thud and bounce) on my peacefully sleeping kids' beds to wake them in about an hour :-)

Be blessed, friends!

Friday, December 23, 2011

Living One Day At A Time

It's so easy for me to become fixated on difficult circumstances.  Financial trials, poor health, etc...whatever life throws my way.  I have a habit of staring my trials in the face, studying them, digesting them, worrying about them, trying to outsmart them, and ultimately, putting all of my effort into attempting to control them.  As much as I say I will 'let go and let God', I find myself standing in the way.

Money dries up?  I obsess over netbanking and look ahead to pay days so that I can over-analyze, over-plan, and over-worry about the next week's budget.  Body fails me?  I look ahead to the next morning so that I might have a shot at feeling better, wonder if there's anything I can do to stop the symptoms, wonder if 'this is just what it's gonna be'.  In the meantime, I miss the blessings.

Hmph.  Maybe this is more of an 'altar call' than I thought;-)

In any case, I woke up the other morning with only one thought running through my typically traffic jammed mind.  That thought?  "Enjoy my blessings one day at a time instead of looking past them to the next 'whatever'".  I've made it a personal quest of sorts to take each day and just...appreciate it.  

Reminds me of the Serenity Prayer.  Live one day at a time, enjoy one moment at a time, trust that He will make all things right.  His 'right', not my 'right'.  They're often two very different versions;-)

It's taken conscious effort to *not* look beyond today.  To calm my mind.  To surrender these trials to the Lord.  In other words, to take a step to the side and get out of His way.  To enjoy the hugs from my kids while they're being given freely (without any begging on my part), to savor my marriage, to appreciate every moment I have with my family members, and to cherish my friendships...

With all that to enjoy, who's got time to stare at the mountain?

"One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering."

Wednesday, December 21, 2011

MS > Flu

I came down with "the flu" yesterday.  'Tis the season, as there are several viruses running through our school community.  My boss warned me that I may be out 2 days, because one of the toughest teachers known to man was out as long with the exact same viral presentation as myself.

Two days?  Pfft!  Maybe to the 'healthy' person...but I've got ms on my side!

Don't get me wrong, this flu put up a great fight. It threw the major headache, nausea, and aches my way.   I shook from chills, covered myself in 2 giant fleece blankets, and slowly sipped powerade.  I was just passing time...waiting for ms to show up.  Once I lost my legs after about 12hrs of shaking and hurting, I knew it was simply a matter of time.  Sorry, flu.  You brought a spork to a gunfight...

MS is the bouncer in charge of this club. If viruses so choose to enter a body that's used to fighting against itself - daily, hourly, minute-ly? Well then, they get what they deserve.

There's just one problem, however. In place of the headache/chills/nausea, I hear a train bearing down on me in my right ear when I turn my head to the left. I have sunburn across both shoulder blades. And my brain is vibrating on a speed of about 2. Clearly, the bouncer is agitated.

Eh, I've come to work feeling worse :-)

Silly, silly flu...

Friday, December 16, 2011

So Not A Weeble

Little girls dream of being Barbie.  Or a princess.  Or something else that wreaks of vanity.

Me?  I wanted to be a Weeble.

I'm so not kidding. 

Come have the capability to wobble, but not fall down?  That's a super power!  My cousin always wanted to be Superman.  He once tied a red 'cape' around his neck and attempted to take flight from the roof of his porch.  I remember his look of determination, his impressive sprint, the spreading of his arms...the widening of his eyes...the THUD...and the gaspings of, "".  Then and there, I couldn't help but consider how vastly different the outcome would've been if he were a Weeble.  You're all seeing it my way, aren't you.  You're welcome.

Alas, my dream lives on.  Honestly, I've never wanted to be a Weeble as much as I have since about 1999, when I first became ill with ms.  Tonight I was reminded yet again.

I thought it would be nice if I took care of an errand for my husband, seeing as how he was going to be out late.  That errand?  Closing in our chickens for the evening.  I threw on his boots and clomped right on outside, armed with a giant Mag-lite.  My last thoughts were, "I got this..."


Straight down on my left side, emphasis on shoulder and hip.  When I finally rose to my feet, which took a few minutes to accomplish, I pointed the flashlight to the ground and noticed a giant divot.  Did I do that???  Yeah.  You know you fell hard when you cause property damage. 

There are 2 things I've found ms to dislike tremendously - viruses and falls.  I have short circuitry bleeping around from elbow to shoulder to neck to face to shoulder to elbow to fingers.  My face is tingling.  I'm sleepy all of the sudden.  Clearly, I'm more Humpty Dumpty than Weeble.

Praise God for cranial sacral sessions with my main man, Greg.  I see an appointment in the very near future.  But for now, coffee and aspirin will have to do.

I'll never give up the dream...

Thursday, December 15, 2011

Rollin' With It...

Allow me to new motto:

If the question is "fight or flight?", I'm fight...every time. 

Except I'm learning that "fight" isn't always best.  I don't mean fighting isn't best in a "suck it up and live my life" sort of situation, because I will always fight under those circumstances.  I mean more in the "fight to change the outcome" circumstances.  I'm learning the hard way that there are times in which I can't control the outcomes.  Lots of times, actually.  I've spent months swingin', kickin', yellin'...but Circumstances (capitalized for effect) treated me like the mean older siblings I never had.  They held my short statured self a giant arm's length away and giggled as I carried on.  I've finally tired myself out.  I got the message ;-)

His yoke is easy, His burden is light.  I may not always be 'happy', but I'm constantly blessed.  Friends and family have rallied around me in numbers.  I am not alone.

I hear You, Lord.  I'm going to be like the guinea pig and take up shop in my little red wagon.  I'm fully and completely at Your mercy, 'cause I can't steer it with my itty bitty guinea pig arms.  I am left to trust.  Fully.  Completely.

As for Circumstances?

They see me rollin'

They hatin'.


Wednesday, December 14, 2011

MS - A Parenting Tool?

I come across many articles on parenting.  It's kind of fun for me to read some of them as a child of the 70's.  Who's with me;-)

Article Du Jour:

By Robert Brooks, Ph.D. and Sam Goldstein, Ph.D.

The following is a brief overview of 10 strategies to help parents foster resilience in their youngsters.  (I'm just going to list 1, which happens to be my favorite)

  • Helping our children experience success by identifying and reinforcing their "islands of competence”. 

Just once I'd like to call my Army Dad to ask his opinion on some of these writings.  Can you see it? 
"Hey Dad, shame you didn't have this article to read back in '75. Says right here you could've helped me experience successes by reinforcing my 'islands of competence'. What say you?"


"Yeah? I gotcher 'islands of competence'.................." (I so love my Dad:-)

Anyway, I've often joked that I could write my own articles. No one would read them, as my thoughts are very old skool and "run around the backseat of the giant Plymouth 'cause there aren't seatbelts" outdated, "jump your bike off ramps w/o a helmet 'cause there weren't any" outdated, "spin around on my Sit n Spin til I puked" outdated. Case in point, I've never heard of 'islands of competence'. But this time, I'm pretty sure I've got these fellas beat.

Whilst I enjoyed their thoughts tremendously, I could summarize their attempts at building a resilient child in one sentence. 
"Have a parent with ms."  
If anyone wants to see what resiliency looks like, they can simply look into the faces of my kids.  Yeah, I'd rather they learn it through 'islands of competence'...but having ms wasn't my choice.  At the end of the day, I think we can all agree I'd really screw up the islands.  Be them of competence, incompetence, continence, incontinence, yada yada...;-)

  (My kids in their "King and Queen of The Mountain" pose...they're such good sports:-)

Sunday, December 11, 2011

Admitting Is The First Step

I think we should create a group called MS Anonymous.  Until that revolutionary idea is widely accepted, I suppose I'll just begin by confessing the accomplishment of my first step.

Step 1:  I admit that I am not able to work the number of hours I used to.

There.  I've said it.  That wasn't so hard, right?

Wrong.  I had to leave the part-time job.  I have a condition called Overtime Intolerance.  The only cure is...not to exceed 40hrs.  Symptoms of O.I. include exhaustion, brain fry, sadness, and explosive bowel movements.  Ok, not the last one.  I just think it's a great side effect of many televised rx drug ads and wanted to somehow incorporate it into a blog post.

Over the past 12yrs, I've mastered the art of "that's not necessarily ms".  The fact that I don't move with the same fluidity I used to?  Easy. "I'm old" and "I have many past sports injuries".  The occasional dribble I may or may not experience while coughing, laughing, or not getting to the bathroom in time?  Simple.  "I've had 2 kids, and one used my bladder as a piece of MMA training equipment".  That boy's always been a fighter:-)

True as those points of contention may be, the cold hard facts about my inability to work the lengthy hours I used to with ease can only be answered with one phrase - "it is what it is".  And what it ms.

As a psychologist once asked me a minimum of 3 times in just one 5 minute session:  "how does that make you feeeeeeeeeeel?"

The real answer?  Worthless...sluggish...lazy...even sad.  I feel as if I should just push through, but I can't, no matter how hard I try.  I just get more sleepy, more fried, more run down.  I feel like I can't expect my husband to do it all by himself.  I feel like it's all my fault.  I don't even know how to properly identify "it", but I just know it's my fault.

I decided to actually speak to my husband about my feelings, which I do not typically do.  Why?  Because he is just supposed to know.  His response went something like, "I'm actually glad you're not working the extra job anymore, because it was killing me.  I felt like it was all my fault that you had to take it.  I hate that none of my jobs are busy right now.  I hate that you have to work at all."

My response, "well that's stupid...knock it off."  (Army Dad emerges at the worst of times)

His response?  "HEY!"

The comic relief was the perfect wake up call for me, however.  I love the phrase, "emotions can lead you astray, but the Word of God stands firm".  Seems like I fell into that familiar pit again.  I wouldn't say I've shaken the feeling of heaviness that adorns my shoulders, but I know how to battle my way out with some very simple truths.  I'm a daughter of the King!  He has a plan for me...and that always makes my heart smile, even though I don't quite know the details:-)  My children look to me as an example of faith, hope, and courage.  They couldn't care less if I'm able to work 50hrs each week or none at all.  They don't mind if I walk into stuff or put the cereal in the fridge and milk in the pantry.  Bottom line?  I'm their Mommy.

I'm their Mommy...I'm his wife...I'm their daughter...I'm His precious child.  These are the things I will focus on and the things I will 'admit' to myself.

Saturday, December 10, 2011

The Glamorous Life - a story about toilet seats

Undoubtedly, some of you saw 'The Glamorous Life' and immediately went to Sheila E. circa 1984.  Yeah, me too.

But this is about toilet seats.

Last night, my husband returned home with a new padded toilet seat.  Right now, ms'ers are tearing up.  Non-ms'ers are wondering if I've lost my mind.  Eh...I've got holes in it, but I wouldn't say it's lost.

My toilet seats must always be padded.  Why?  Because I spend a lot of time resting upon them.  And I'm worth it.  You can keep your 'Leo Diamond' and your 'Lexus just in time for Christmas' (does anyone seriously do that?).  Because last night, when my husband walked in with a brand new, thickly padded toilet seat...for 10.99?   

I gasped and said, "it's beautiful!"

Farewell, previous padded toilet seat with torn up covering that ran completely around the seam.  And thank you, mystery angel who provided us a Christmas blessing.  Without you, I would not currently be living...

The Glamorous Life

Thursday, December 8, 2011

My Week, Summarized by Donna Summer

Worst week ever.

Seeing as how there was a particular week in which I heard, "you have ms"...wouldn't you say that's "sayin' somethin'"?

To summarize...someone left the cake out in the rain.  And I'll never have that recipe again.

If it could go wrong?  It did.  If a situation required someone to blame?  It was me.  Stretched in 18 different directions, I reached the point in which I picked up the phone, called my mother and proclaimed, "I can't be all the things people want me to be right now, Mom.  I feel like Plastic Man in '79."

Dear Plastic Man, 

Was your scalp also tingling and shooting zingers?  Did your legs go weak, causing you to trip up the stairs?  Lastly, did you feel compelled to stick your face directly against the nozzle of a fire extinguisher in the hopes that you could find a good Samaritan to squeeze the handle and not let go...until it was empty?  Because your face felt a lot like a bonfire?  Please accept my most heartfelt apologies.

Tonight was capped off nicely by the black box of doom that stands at the edge of my driveway, staring at me through the window, daring me to come take a look inside.  This week's score is Mailbox 4 - Me 0.  Tonight, there was a letter from a health insurance company I applied for family coverage with, because we're trying to get a little relief from my husband's $187/week payroll deductions.  Here is a snippet of their response:

"Additional requirements are needed.  Please submit copies of Tina's medical records from her primary care physician and neurologist for the past five years.  A decision will follow after review."

What's that, Mr. Rogers?  "Can you say, DENIAL, boys and girls?"

(Plastic Man?  Mr. Rogers?  Donna Summer?  Clearly I've retro'd...)

Here's the good news.  The week is almost over!  More good news?  My brain is currently operating within the late 70s.  Because when I retro, I seem to go to the very same place in time.  Someday, I will incur a neurologist who can fully explain this phenomenon to me.  In the meantime, I must take a moment to thank Donna Summer for providing my retro theme music.  I still recall Mom taking me to the record store to purchase the 45.  Though she despised the song, she always placed my needs above her own.  In turn, I've haunted her with it.  I've called her and played it over the phone.  I've posted the video to her facebook page.  I've even recruited my kids to do the same.  Turnabout is fair play.  She posts pictures of the monkey with cymbals on my page.  Not funny to scare the heck out of someone with ms, Mom... :-)    

I suppose she did have a point.  Why would someone leave the cake out in the rain?

Saturday, December 3, 2011


Perspective is multi-faceted, right? 

You've got the visual perspective - as in how far away from that door knob I think I am, or that curb, or that snow boulder.  Wrong, wrong, and wrong. 

Then, you've got the mental perspective - as in how athletic I mistakenly still believe myself to be.  Like that I can skip down the stairs whilst carrying something and hop off the bottom step in mid turn 'round the corner.  That ends up in direct proportion to the visual, many times.  I end up face planting into the door.  Told you laundry is the most athletic thing I've got left...

I'm usually all about perspective.  My mind is chock full of cliche phrases like, "attitude is everything" and "where there's a will there's a way".  I recite scripture and remind myself of the Lord's promises.  It's really the perfect blend of being a product of an Army Dad, as well as a child of God:-) 

I didn't realize that I'd forgotten all of that when trials are of a different flavor.  The Lord has a funny way of using my kids to remind me of such things.

You know how, as a husband and wife, you have those conversations that are sensitive...but you speak in code so as to spare your children?  Well that's what we were doing.  I had done a masterful job, if I don't say so myself, until I got careless and mentioned something about a task I needed my husband to take care of on a particular weekday morning.  Our son interjected:

him: "isn't Daddy working?"
me, filling in for husband with deer-in-headlights expression:  "no, he's off."
him: "so that means he'll be home when we get home from school?"
me:  "yeah"
him:  "yay!  Wait, are you off, too?"
me:  "yeah"
him  :::hands in air, celebration dance, woo hoo'ing:::

Try as I may, I wasn't able to hold back my tears.  All the stress and worry over circumstances, all the stress and worry over this impending day...and someone was celebrating it in a way I could've never imagined?  Yeah.  I had to get out of the room quickly, so as to go unnoticed.  I'm uncertain why, but I found myself in the kitchen, loading the dishwasher.  That cued my husband to seek me out and ask what was the matter.  Clearly, I'm not the 'do the dishes' kind of wife;-)  I brushed my tears off on ms, saying they were pseudobulbar.  Hey, I don't play the card often, but how could I explain to him that, when I saw the absolute joy in the faces of our kids over the fact that we would both be the same night?  Well, it reminded me.'s all about perspective.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything.  - James 1:2-4

Tuesday, November 29, 2011

Hitting The Wall - Part Deux

Just getting in from night duty and focusing my thoughts on sleep.  Have you ever been too tired to sleep?  That's where I'm at.  I refer to it as "Stupid Tired".  Side effects of Stupid Tired may include drowsiness, insomnia, the dropsies, word salads, and the inability to care about any single one of 'em.  C'mon, Mr. Sandman...I'm not even asking for a dream here.  In fact, just make it a version of sleep that resembles general anesthesia.  Please and thank you.

I don't know about you, but sitting for as long as I've had to lately causes my legs to forget all about the job they have to do.  Fellow ms'ers know the following phrase all to well:  "If you don't use it, you'll lose it!"

Shout out to my paraesthesia peeps!  The pins and needles started around 3pm, then came the pain around the 6pm hour, and finally, the nummmmb.  Personally, numb is my choice...every time.  I'd rather feel nothing than pain.  I'm extreme like that.  By the time I stood up to leave my post at 8:30pm, I was on lower body auto pilot.  Basically, I tossed my feet forward and hoped they landed evenly.  Success! 

I walked in from work, waddled upstairs, changed into something halfway athletic, and warned my dear family that they would certainly want to look away so as not to catch a glimpse of what I would be doing to awaken my legs.  They were also asked to ignore any squealing as I pushed the circulation back through my legs.  That feeling, in my opinion, is a lot like chewing tin foil.

Commence marching!  Not just any marching, the kind that Billy Blanks did back in the Tae Bo days.  My music of choice?  "Only Girl" by Rihanna.  I like to march double time (or attempt to) and sing my own lyrics as an ode to ms.  For example:  "want you to make me I actually feel my legs..." and other stupid, non-rhyming, clusters of semi-related words.  There I was - marching (okay, clomping) in place, singing, squealing, and trying not to visualize the official video that reminds me of the Teletubbies landscape.  My family tried not to look, but you know what they say about train wrecks.  You just have to.  And then I saw it out of the corner of my horsefly-filled husband's face looked like a balloon that was taking on too much air.  He was holding his breath so as not to explode in laughter.

Whatever.  He's just jealous that I can keep a beat regardless of whether or not I'm numb from the waist down.  'Cause I got it like that.

Don't hate, honey...;-)

I've Hit The Wall

Not literally, though I don't rule that out on a day like this.

I started my part-time job about 10 days ago.  I enjoy the work.  It suits my lack of focus, because every call is something different.  I truly love the owner, the people, and the office, itself.  So what's the problem, right?

Problem is, I continue to become more tired and scatterbrained as I go.  I don't have a set shift yet, so I do a few hours of training and am told to come back the next day for another few hours.  Last night, I left my house for work at 7:15am...and didn't get home until 9pm.  I'm supposed to do the same tonight.  The sheer thought is making me sleepy.  Verrrry sleeeeeepy.  I've had enough caffeine to send me into convulsions.  It ain't workin'.  I'm replaying every motivational speech I've ever heard over in my mind.  Again, ain't workin'.  All that's stuck in my head is a visual of Susan Powter, screaming at me to stop the insanity.  I thought of my husband, who has plowed snow on the turnpike before, working upwards of 36hrs straight with nothing more than a few minutes of sleep in between.  Nope, that ain't workin' either.  Poor husband.  Right about now, he'd welcome a 36hr shift.  As he said this morning, "how can I have 3 jobs and none of them are busy?"  I'd like to look at it as the Lord's way of giving that man a break.  Conversely, I'm wondering what His message is to me...

Tingling skin, extreme sensitivity to noises (do people REALLY have to sharpen an entire box of pencils within 10 yards of me?), vertigo, and eye flies the size of horseflies in my left eye.  Not just any horsefly.  The kind that lands on you, opens its monster mouth, and chomps on you.  THAT size horsefly.  Can I tell you how hard it is to read a computer screen with eye horseflies?  Just another super cool ms thing, I suppose.  Super cool like a hang nail...

Hmm.  I just logged into ebanking and saw our balance.  Well, maybe that one will light the fire.

...nope.  Still ain't workin'.

Lord, I praise You in this storm.  And not just the current tingling, sound sensitive, spinny storm.  I mean the financial one.  The health one.  Every single 'one'.  I know Your hand upholds me.  It's the only thing keeping me going, because without it, I'd have face planted by now ;-)

Be well, fellow ms'ers!  Look out for those walls - both literal and that kind that I just hit!  Watch out for those eye horseflies...

Seriously?  This is in my eye?  Thanks, ms!  'Preciate it!

Saturday, November 26, 2011

John's Auto Body

My husband is a man of many trades.  If it breaks, he can typically fix it.  Plumbing, electrical (okay, that one's a little scary), cracks in cement, minor engine repairs, stuff like that.   

And today, John's Auto Body is open.

Personally, I'm wondering if I shouldn't discourage him from pulling this out.  I mean, I think it sends a very clear message.  That message? 

"This lady is not afraid to put this car into places it does not fit"

I've previously shared my challenges with properly judging things that appear to the right of me.  Sometimes, those things are very hard.  I have bruises up and down the right side of my body, and dents and scrapes up and down the right side of my car.  Don't worry...I never drive too close to people, other cars, stuff like that.  I'm overly cautious in those situations, because I know my limitations in all things "to the right".  But curbs, fences, and snow boulders?  As you can decipher from this photo, my car tells the story.  Check out that tire...

I remember informing my husband of this latest "boo boo", which was acquired in a partially plowed parking lot at school after our freakish October snowstorm.  My legs were feeling heavy and I needed a spot as close to the building as possible, but there weren't any.  Well, except for the one that was partially plowed, that is.  I made it, but not without some technical difficulties.

The 'at home' conversation went as follows:

me:  "I really thought I had it.  But it turns out that it was another case of 'objects on right are closer than they appear'."
him...extending hand outward to dent:  "YA THINK???"
me...holding back laughter...
him:  "Did you know you hit the snow?"
me:  "Oh yeah, definitely.  I felt it.  And I heard it crunch."
him:  "...and???"
me:  "I figured I probably already put a dent in it, why quit at that point?"
him:  "Hon, you don't drive a Tahoe anymore.  You don't have steel bumpers on this thing.  You can't just stick this car wherever you want."
me:  "Ooooooh, I beg to differ!"
him...walking away...shaking head...mumbling to himself...

Personally, I think it's probably pretty fun to be married to me.  I'm just sayin'.

Friday, November 25, 2011

This Crazy Mixed Up Place

I'm currently having an allergic reaction to this crazy, mixed up place we live in.

Is it me, or are people becoming more self-constipated?  Yes, "full of self".  Twisting things that are so *not* about them into something  Missing the point of something beautiful, because they've somehow made it about themselves?   

And, on a different level, the inconsideration.  My grandmother recently regained the ability to walk (with a walker).  Her pace is best compared to a snail's, which is truly saying something since we were making funeral arrangements less than a year ago.  The other day, a man decided to take .5 seconds out of his day to hold a door open for her, despite my telling him not to worry about it.  Then, after seeing how long it was taking her to approach the door, sighed and said, "don't hurry".

(oh temper temper)  

Black Friday?  Fahgettaboudit.  I think I've finally found the blessing in having absolutely no money over and above paying for bills and groceries;-)  My thoughts are not plagued by the elusive item that's on sale and whether or not I'll return home bruised after obtaining it.  Instead?  I'm concerned with whether or not I'll be able to continue working this 2nd job.  Praying for the energy to keep on with it.  Praying for mental clarity, which is waxing and waning right now.  Praying for the Lord to continue to provide, and part of that provision I'm praying for is that He remove the short-circuitry that is currently blipping and bleeping around in my brain.  MS has thrown me a cognitive flare for good measure, just when I'm near the end of my training and about to fly solo.  Can't very well work for an answering service, where I'm expected to answer 2-3 calls per minute - yes, per minute - and speak like Porky Pig.  Shame I can't just pick up and say, "HEY!  'SUP?"  That would save me time (and face) on the talking end.  There aren't enough dark berries on the shelves to quiet this one, friends.  I'm fresh out.

...and even all of that is self-constipated.  Because there are so many people who would love to trade places with me.

Just as I was about to type a closing sentence, "Overcome" started playing on my pandora.  I think that's the best conclusion to what may be my most disjointed blog post ever.  There's a verse that goes, "You're sending us out, light in this broken land".  Thank you, cleverly timed pandora song, for reminding me that it's time to get my light on.  Which is not at all like the Kmart blue light special.  Not at all.

Look out, Black Friday maniacs.  Here I come and I'm on a mission for produce!  Don't want to have to take somebody down over a container of blueberries!

(you're a light in the land, Tina...light in the the light...:-)

Friday, November 18, 2011

To Tell or Not To Tell...

I had an interview for a part-time job, yesterday.  (the power of prayer is mighty...thank you, prayer warriors!)

No problem.  I can 'sell' myself fairly easily.  Handshake, eye contact, cheery face, show off the multi-thousand dollar smile (the power of orthodontics and false teeth is mighty...thank you, Mom and Dad, and Care Credit!), speak intelligibly, throw a joke in for good measure, and I'm usually walking out with the job.

That's exactly how it went yesterday.  I walked to my car in a state of bliss, thanking the Lord for His provisions, and attempting to mentally calculate how soon we could be out of the pangs of finance-orexia!  (it'll be awhile, but it's a step in the right direction!)  Then, I heard that little voice yell out, "WAIT!  You forgot about you-know-what!"   HOW did I forget to tell her about you-know-who?

To tell or not to tell, that's never been my question.  Because I've always told.  Has it worked out negatively? You betcha.  But in those situations?  I figured those just weren't the paths God wanted me on.  As much as it's hurt my pride, my feelings, and even my checkbook...He has always had something better for me.  And you know what they say about pride.  It comes before the fall.  So does foot drop.  I'm just sayin'.

me:  "I was having so much fun yesterday that I forgot to tell you something"
her:  "okay?"
me: "anytime I've approached an employment situation over the past 12yrs, I always like to disclose the fact that I have ms.  And what that looks like in the workplace is that I might use the bathroom frequently.  Also, I might look tired, but I provided references from several people who have worked with me and whom I've worked for so that you could......"
her: :::interrupting:::  "I don't care"
me, like a little kid who was just given a giant lollipop:  "really???"
her:  "really"

Thank You, Lord:-)  Her reaction showed me that this is obviously a path He wants me on.

...maybe I should've told her how I walk into things?  Eh, I was about to.  Guess everyone will figure it out when they hear the thud.

(the power of prayer is mighty...)

Wednesday, November 16, 2011

Isolation Island

i·so·la·tion [ ssə láysh'n ]

1.separation from others: the process of separating somebody or something from others, or the fact of being alone and separated from others

2.geographic remoteness: remoteness from other inhabited areas or buildings

Just saying the word quietly to myself gives me a chilled feeling.  Then again, I have the heat turned off in here.  Maybe the chill is legit and I just need to reclaim my snuggie from the basset hound.
Isolation can be something I choose or simply a place I find myself in.  When I choose it, it's because I don't want others to see just how hot of a mess I am at the moment.  And these are some pretty important people.  The family members who just want to know how I'm doing.  The husband who just wants to hold me at night.  The church family that probably wonders just what the heck happened to me.  MS and finance-orexia.  That's what's happening.
I feel like people wouldn't understand.  It's hard enough for them to comprehend what it's like to have ms when they can see a person wearing the symptoms, but how about us 'invisible symptoms' folks?  Though right now, I suppose you could say I'm having 'audible symptoms'.  I whipped out with a word salad yesterday, as I accompanied my daughter to a doctor's appointment, that should've received some sort of award for 'shock value'!  The nurse literally stopped what she was doing, put her pen down and said..."I'm sorry, can you repeat that?"  To which I said, "probably not". 
For those times I simply find myself there?  I'm reminded to deliberately fight my way out.  It's as if my choosing to quarantine is so much more acceptable.  If I end up there without intending on it...well, in the words of The Bugs Bunny, "thems fightin' words!"  Listen, I never proclaimed to make sense.  Maybe my reasoning got lost in one of those holes.
Today - I found myself in isolation.
Today - I'm choosing to drink my coffee from the special mug my friend brought to my house one morning when I had been in isolation for so long that my spirit hit the wall...hard.  I remember like it was yesterday.  I found myself lost in my closet, unable to choose an outfit, to brush my teeth, to stop twitching, to stop crying.  Something in me forced myself to send her a message.  Within the hour, she arrived with her Bible, a bag of coffee, and this mug.  Her presence seemed to melt away the coldness and darkness I had become stuck in.  I always say..."everybody needs a Debbie":-)
Today - I will consciously focus on stepping out of isolation. 
...because nobody puts Baby in a corner... 
Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. – Psalm 139:7-8

Sunday, November 13, 2011

He'll Never Let Me Go (...a God post)

Sometimes I'll write a post and doubt whether or not I should click on that orange 'publish post' button.  This is one of those.  Okay, many of them are 'those'.  Oh well, I guess I'll just type it as it comes and let the cookies crumble how they like;-)

:::rubbing face with both hands::: 

Last night, a friend of my husband's was poking fun at me for my faith. 

Disclaimer:  She was not attempting to be malicious.  She was, more or less, jokingly mocking me.  There's a difference in my book.  One I can attempt to speak to, while the other simply requires a head shake.

I know what it is that gets me through each day.  A God I haven't always known.  A Creator who cared so much for me that He continued to pursue me.  He has given me the miracle of a healed child, and of a restored marriage.  He's shown me that who I thought I was?  Pales in comparison to all that He intends me to be.  The strength I always credited myself with?  Can't hold a candle to the strength He gives me.  He calms me.  Wait.  Let me say that again...

He calms me.

Doctors #1-5:  "If your son survives, the best case scenario is that he'll have at least some form of mental retardation."

(...and that's when I found out just how 'real' God is)

Psychologist #1:  "I don't think you've accepted the fact that your son will never...(insert things parents dream of for their children)

(...circa 2011, son has been and done all the things that guy listed, as well as additional things he may have said, but the steam from my ears rendered me unable to hear.  My son may have the word 'restored' handwritten in black ink within his med chart, achieve distinguished honors in school, play sports, and be actively involved in school gov't, but his biggest victory is his faith and trust in the Lord.)

Psychologist #2:  "I don't think you've accepted the reality, Tina.  You have a chronic, lifelong, debilitating disease"

(Totally get that, but I refuse to cry over it.  It doesn't deserve my tears.)

And last night...

Husband's friend, as hockey team was getting blown out:  "don't you have to go to the bathroom to pray?"

(...what's that catchy, new abbreviation?  'SMH'.  Yeah, that:-)

It's okay.  Not everyone has been brought to a state of emotional weakness that drove them to their knees in a literal fashion, as I have - so prayer might sound silly.  Not everyone has found themselves face down on the floor, sobbing, feeling as if everything was spinning out of control and there was nothing they could do to change it - so faith might seem frivolous.  And if they've never fallen down 10 steps in front of their toddlers, landed in a crumpled heap, knocked the wind out of themselves, and had to communicate through a series of clicks and grunts to obtain a phone to call their mother for help...

Well then...they probably don't have ms;-)

Saturday, November 12, 2011

When MS Is Near The Bottom of My Worry List...

If life was "fair", the folks at Corporate would take a look at my file and say, "you know, ms is certainly a challenging thing to deal with on a daily basis.  Let's avoid giving her anything else."  Alas, this life is anything but.

I typically don't provide my husband with a play-by-play of the goings on within our checkbook, which is suffering from perhaps its worst case of finance-orexia to date.  I keep these stresses close to the vest for no other reason than the fact that he is working as many jobs and hours as possible.  But you know how that goes.  He ends up unknowingly stepping foot into my inner bear trap with a simple statement like, "my workboots are coming apart".  Something like that throws me straight over the edge.  It becomes the single worst financial catastrophe known to man.  Does he seriously expect his entire foot to be covered in a boot?  Diva material right there.  Or, like this morning, "I really need that part for my truck.  It's wanting to shut off."  Right there with ya, busted up Chevy truck. 

I'm considering crafting a 'coffee table book' out of all the collections letters on my desk.  I mean, come on...there are light blues, hot pinks, and even an orange.  Slightly tacky, don't you think?  As if I'll choose whom to pay by the color of their threat.  Although, this orange is actually pretty impressive;-)  At least the mortgage company doesn't insult my intelligence in such a fashion.  Their letters are classic white, corporate letterhead, hand signed, and delivered via courier service.  Clearly, someone has taste.

Alas, ms shows its face in this increasingly intense trial.  I need to get a part-time job, but when I'm already putting in 40hrs/wk and dragging myself through what is commonly known as "Friday", it seems a bit daunting.  And it goes without saying that we ms'ers know how we are NOT to become stressed out.  Am I the only person who recites, "I'm not gettin' stressed out over this" over and over in my mind?

I know that God has a plan.  He promises to carry us through every trial and I've seen it time and time again.  It's not hard to count my blessings, because there are so many.  I fought with myself as to whether or not I should write all of this, but I thought if there was at least one fellow ms'er out there going through the same thing, they could be blessed by it in some way. 

If that's the case, let's join together in keeping an ear to the sky, and trying to be patient enough to allow God to work this out for His good;-)  And if you have additional ideas for how I might decorate with these pretty letters, let me know! 

Be well!

Tuesday, November 8, 2011

List of Things That Make Me Feel Dumb

I've compiled a list of 11 things that make me feel dumb, because 10 is not enough.  And I blame ms. no particular order:
  1. forgetting my grocery list
  2. forgetting the grocery list my husband made for the groceries I didn't get when I forgot the original list
  3. hitting myself in the head with my hair dryer while drying my hair...more mornings than not
  4. spraying hairspray in my eye, face, and/or mouth...more mornings than not
  5. putting the cereal box in the fridge and the milk in the pantry
  6. finding it difficult to operate a purse with more than 2 compartments
  7. hitting things with the passenger's side of my car
  8. unintentionally flinging objects I may be holding in my right hand
  9. walking into a wall
  10. occasionally speaking in "alphabet soup" sentences
  11. chalking that 'bugs crawling on me' feeling up to ms, when it's actually a stink bug's my car's latest bruise, due to "October Freaksnow 2011" (and a slight miscalculation):

TGIP, baby!!!  (Thank God It's Plastic?)

Some may say, "Tina?  Do you really think it's fair to blame ms for all of these things?"  To which I say...absolutely.  I went to high school in the 80's, naysayers.  Imagine the traumatic head injury I'd have caused had I clunked myself in the forehead with the giant hair dryer of old?  All while bent in half to create the giant hair necessary with which to go to the mall?  Also?  I'd have blinded myself with one shot of Aquanet to the eye, or required skin grafting had I sprayed myself in the face.  Ladies of the 80's, I know you hear me;-)

What's a girl to do?  Eh :::shrugging:::, accept the fact that I'll need to go for groceries 2 and 3 times a week.  Steer clear of objects on my right, even when walking.  Always verify the presence of a bug prior to assuming otherwise.  Look in the pantry for milk.  And perhaps most importantly, close my eyes whilst applying hairspray.  Shame they don't tell you all this when they dx you, right?

Saturday, November 5, 2011

Mother Knows Best - Until Her Son Shows Her Otherwise :-)

My son came down with his annual case of 'croupy, coughy, tightness in the chesty' mess last week.  He's been going around this mountain for all of his 12 yrs, so he's really pretty good at it.  Now that he's older, all it seems to require is lots of hot tea, a couple of days home from school - tucked away in blankets, and a few gallons of orange juice.  At night, we slather some Vicks on the bottoms of his feet, put a pair of Daddy's big socks on him, and he sleeps like a rock.  Can't say "like a baby", because no baby of mine ever really slept.

He woke up this morning, Day 7, better but not 100%.  The barking cough was more of a typical cough.  He was very much looking forward to participating in his playoff hockey game tonight.  His mother (ahem), a rather neurotic woman when it comes to his health on account of how many hospitals and doctors' offices she's held him in, automatically dashed his hopes of playing.  What did he do?  He played her like a fiddle.  That's what he did.

How'd he beat me at my own game?  Easily.  He used my own weaponry against me.  That catalog of weapons?  Includes coolness under fire, quiet and patient persistence when there is a strong belief in something, and when the moment calls for it, a passionate plea.

I don't know about other moms out there, but when you're looking (slightly) down at your child and he says stuff like, "Mommy, you don't have to worry about me.  I wouldn't ask if I didn't feel well enough.  I really just want to play is all", it's still pretty easy to say no.

But when you have something like ms and your child says, "it would mean a lot to me"  :::eyes welling up with tears, long pause, slight smile that expresses the utmost of respect:::  "Nobody stops you..." causes you to recall the doctor's advice to stop doing many of the things you love to do, your husband's worry and advice against some of the things you like to do for fun.  You've got 2 big, beautiful hazels staring straight into yours.  What do you do?

:::you hand him his helmet and tell him to kick tail:::

He played perhaps the best game of his entire season.  He was a sliding, diving, goal stopping, tenacious defenseman!  And when he came off the dek in a 5-3 loss, which was much more lopsided in favor of the opposing team than the score reflected, the first thing he said to me was:  "Thanks, Mom!  That was awesome..."

No, buddy.  You are awesome. 

Resilience.  Inner strength.  Character.

When the Lord uses my friends to sharpen me, I'm so very thankful.  But when He uses my children in such a way?  I'm completely, fully, and totally...humbled:-)

Tuesday, November 1, 2011

Reflecting On Yesteryear, Finding The Joy In Today:-)

A very dear high school student stopped by my classroom to see if I'd mind serving as a "supervisor" for her, and a small group of her friends, who wanted to conduct a preseason workout in the weight room.  Preseason?  Like as in sports?  As if I'd ever say no to helping out with that!

While the girls conducted their workout and socialized, I sat there with my feet-of-thorns propped up on a weight bench...reflecting.  I remembered being a teenager.  I remembered how the majority of my friends couldn't wait to hear that last school bell ring on a Friday afternoon, because that meant they'd soon be out on the town until the wee hours of the morning.  Me?  I couldn't wait to hear that bell, because it meant I'd be practicing whatever sport was in season, or I'd be in the weight room with a few friends, laughing and chatting about life...just as these gals were.  Because come on, I wasn't allowed out past 10pm.  Army Dad;-)

Athletics were my life.  They were how I defined myself.  The newspaper articles, the travel teams, the championships, the trophies, the tryouts, and the "atta girl"s.  On the less glamorous side of the coin, there were also the injuries, the hurts-so-bad-it-feels-good pain, and the 2 false teeth I have from a home plate collision.  But I was safe.  As if you had to ask...

Most of all?  I remember the fun! playing goalie in my senior year for a coach who openly admitted to peeing when she jumped up and down.  She'd say, "you give me a heart attack when you charge out of your net at the forward, but when you make the save, I jump up and down...and pee a little!"  Who knew I'd grow up to be just a bit like her?  Almost like that thing your mother does to you when she wishes your kids to act just like you?  Not fair. how much I loved playing softball.  And how I played since I was just an itty bitty.  And how my life, as well as my parents' lives, revolved around my practices, games, tryouts, tournaments, travels up and down the entire east coast, yada yada.  If I were them, I'd demand a refund.

But stuff happens.  Stuff like ms.  Now, the most athletic thing I'm capable of?  Is grocery shopping. 

Well, I do try to exercise.  Sadly, I haven't yet mastered the point at which I'm supposed to cease activity.  Obviously, I'm a slow learner after 12yrs of living with ms.  When I exert myself, I become dizzy, my vision blurs, and my legs morph into cement blocks that twitch.  I tell myself to push through it, just as I did my entire athletic life.  I was always the sturdy girl who could run miles that skinny girls struggled with.  Why?  Because I have just a little bit o' crazy in me!  Too crazy to stop, too stubborn to quit.  Maybe that's a good mindset to have with ms?

The other athletic thing I can do?  Is clip the plastic chips off the shoes of people who run for people like me.  Sure, I may have gotten dizzy with the standing up and leaning over.  Yes, my hand may have begun to cramp and twitch.  Certainly, I may have had to relinquish my clippers to another volunteer when I could no longer see whether I was cutting the chip or the person's shoelaces, but...

...that's okay, because I sure did have fun!  And I'll do it again this year. 

Yesteryear can sometimes feel like a lifetime ago.  While it sometimes can feel as if I was able to do much more than I am today, it doesn't take me long to realize that I'm so blessed to be able to do abundantly more.  I'm thankful to be "redefined".  Here are a few of my favorite things of present:

I get to experience the joy in cheering for my kids:-)

I get to volunteer in a camp kitchen.  And when I do, I raise the roof.


But perhaps the most fulfilling and, arguably, most important thing I can do?  I can throw one foot on top of another, bask in the sun, and teach my kids to notice God in every last detail...

...thank You for my every blessing, Lord:-)))

Thursday, October 27, 2011

Exactly Where'd This Come From Anyway?

I can't help but notice all of the recent chit chat that revolves around the question of how?  How did did we...end up with these 2 little letters on our med charts? 

Funny as it may seem, I never really gave it too much thought.  Certain family members of mine, on the other hand, continue to question it some 8yrs post dx and 12yrs post initial flare.  When I say things such as, "I'll bet it was those red chewable tablets they gave us in elementary school that showed the plaque on our teeth!" or "maybe it was because we lived in a 10mi radius of a nuclear power plant, a landfill, and a chemical facility!" or "well, I did drink from the garden hose when I was a kid, remember?" - they are not amused.  Seriously?  Those tablets lied.  I'm just sayin'.

We've heard an awful lot about the Epstein-Barr correlation, right?  The vitamin D deficiency is also a hot topic, as is smoking.  Sure, I have EBV in my bloodstream...but so does 95% of the population.  Granted, 95% of the population didn't come down with a most wicked case of mono when they were 17yrs old, such that they had to miss an entire half of their softball season due to the fact that their spleen was the size of a watermelon - with seeds - but who's counting?  Vitamin D is and always has been quite abundant within me, 'cause a girl's gotta get her tan on!  I did smoke for a few months, but (follow this logic) quit when I found a cigarette I truly enjoyed the taste of.  I didn't want to become addicted, so I stopped.  Hey, I never said I could be accused of making any sense back then, but I'm nothing if not honest;-)

I've come across a new topic in the self-titled "World of How's", which has been reported by our fearless leader, Ms. Lisa Emrich.  (I so love Lisa, and I so love her writings:-)

This writing discusses sleep deprivation and working teens, as well as the Circadian Rhythm.  Let's take a look at that, shall we? 


Um?  Let me tell you, my Circadian Rhythm would look a whole lot different if someone were to graph it out.  There would be built in coffee intervals, numerous partial bladder emptyings, a few mid-afternoon stumblings, and if I'm not "fastest reaction time" occurs in the middle of the night, as I'm rushing to the bathroom, highstepping the family cats and putting spin moves on the door knobs that separate me from my promised land (aka toilet with padded seat) with the athleticism of a Heisman Trophy nominee.  That 2am "deepest sleep" they list is comical.  That's right about when I wake up for my first installment of "partial bladder emptying".  IF...and that's a capital "IF"...I'm even asleep by then.  I'd be fibbing if I were to say that I'm not envious of this chart.  I'd be further fibbing if I were to say I wasn't going to read more about it to see if I could somehow wrangle mine into something that more resembles this.  Finally, an interesting topic with which to occupy my insomniac hours! 

All of it is very interesting food for thought.  EBV, several shots of Rhogam with my pregnancies, rhythms my body doesn't have?  I don't know, I'm still leaning toward the chewable tablet/garden hose drinking theory...

Sunday, October 23, 2011

To Zumba...Or Not To Zumba

Zumba is the latest thing, right?  Ugh.  It's always somethin'.

When I was a kid, it was Richard Simmons with his headband.  I remember eating Twinkies and bopping my head to the music.  What was next...Denise Austin?  That may have been my Ring Ding phase.  Of course there was Susan Powter, shouting at me to "stop the insanity!" when I was in college.  I still recall watching her in the dorm's tv lounge with a group of friends.  I had a plateful of those english muffin pizzas we always made.  She said something about her thighs no longer rubbing together when she walked.  I was dumbfounded.  I threw my hands up and said, "you mean they're NOT supposed to do that?  You gotta be kiddin' me!"...which drew the laughter of all. 

:::For some reason, when folks are exercising on tv - it makes me hungry:::

Zumba.  I've avoided it all this time, but they're bringing it to my school and there is a certain measure of peer pressure.  It's like being in high school all over again. 

  • "Everybody's gonna be doing it!" - Nice try, but I never did follow the crowd. 
  • "I heard it's good for people with ms!" - Really?  Because I like light exercise and cheesecake.  I think that's great and I've got ms! 
  • "It's just dancing to music!  You like to dance, don't you?" - Just dancing, eh?  Yep, I like to dance.  Every 5 years at a class reunion, and only when they play "Jump On It", because who can deny themselves the thrill of the rotating lasso swinging dance?  Not I.  Problem is, I'm not too old to remember how I used to dance.  Ya know, pre-ms?  Back in the club days...when my body didn't spasm and jerk and stiffen randomly.  Because for the past 12yrs, it's looked pretty much like this:  

Zumba class starts tomorrow after work.  Maybe I'll just watch the first one to get an idea for it.  With a PSL w/wc (pumpkin spice latte with whipped cream) in hand.  I like to walk for exercise.  At least then, when a foot kicks out, it typically lands in front of me.  The only music playing is that which is in my head.  In other words, no one can tell how truly out of rhythm I actually am ;-)

As always, ms'er opinions are encouraged.  For example, if you've jerked and spasmed your way through Zumba, let me know how you've felt afterwards.  And if you think I should go with the cappuccino in lieu of the latte, I'm all ears!

Saturday, October 22, 2011

Tina - 1 What If Game - 0 (or at least for today)

I beat the What If Game today.

You see, it was Grandparents Day today at school.  Why do I love GPD?  Because at the old age of 39, I'm blessed to say I still have my grandmother.  And I am her only grandchild.  Yes.  I am spoiled. 

About 2.5 years ago, my larger-than-life grandmother fell ill with osteomyelitis.  It's left her to battle sepsis not once, not twice, but three times.  It took her mobility.  It took up shop in her spinal cord.  It cost her 23 transfers between hospitals and skilled nursing facilities.  She's had 4 transfusions and been near death 3x, only to come out of a comatose state - hungry for spaghetti.  Obviously, God wasn't ready for her yet.  Nor was the kitchen staff at that particular hospital at like...8pm.  To say it's been a long and grueling 2.5yrs for her would be an understatement.  We've basically gone from making "arrangements" to discussing the possibility of her "discharge home" date.  She's learned to walk again, albeit slowwww and with a walker.  She's not ready to come home yet, but she may be.  Soon.

Enter the What If Game.  Today's categories were "You Have MS" for 1000 and "She Isn't Independent" for 5000.  For example, the What Ifs expressed by others in relation to my desire to bring her to GPD were, "What If she falls?", "What If she has to use the bathroom and doesn't make it in time?", and lots of other "What If"s. 

I understood the concerns.  But when you live with the What If Game looming over your head on a daily basis?  When I knew full well that any of those well-intentioned, lovingly spoken "what ifs" could happen to me just as easily as her?  All I could think of was...

What if it doesn't?

If it doesn't, she'll get to enjoy another day that this life has to offer...because the last 2.5yrs haven't been very kind to her.  If it doesn't, my kids will get to have breakfast with their great-grandmother.  And, "only child speaking", so will I.  What was the worst thing that could happen?  We both fall, we both pee, and everyone stands in horror as we laugh about it. 


Know what I figured out today?  That maybe we can beat the What If Game with a dose of its own medicine.  When it says, "What If (insert unfavorable ms-related thing)" we can say, "but what if it doesn't?" 

As long as I can remind myself of that;-)

But for today, victory was ours... 

Saturday, October 15, 2011

What My Job Means To Me

I love my job.

On paper, I am classified as an "Educational Therapist".  Basically, I have some fancy training that says I can work with kids who have "learning differences".  For the sake of imagery, picture me making quote fingers wherever you see the quotation marks. 

In reality, I'm just a woman (with some fancy training) who believes that kids who "learn differently" are no different than any of the rest of us.  We all have gifts, talents, strengths, and things we could improve on.  My students?  Are referred to at school as...mine.  Oh don't worry, their parents are not only completely fine with it, they wouldn't have it any other way:-)  And let me tell you, they are brilliant.  Some can do mental math that others would need a calculator to complete.  Others can draw pictures so vivid you'd think you were looking at a photograph.  I have kids who can whip around on the computer with the speed of a gazelle, and others who could earn full athletic scholarships to college.  Some can write beautiful poems, others can sing like nobody's business.  My job?  Is to remind them of just how awesome they are.  That, and to help them overcome the things that maybe don't come quite so easily. 

To pass by them in the hallway, you'd never imagine the challenges they tackle on a daily basis.  I know a little something about that.  We have a lot in common, my kids and I.  I get them.  I understand that, behind that smile?  Could be a big ball of anxiety.  Behind that gaze?  Could be a heavy traffic jam on the highway of their mind.  Depending on the subject of that lesson, the traffic may be bumper to bumper.  Sure, there are those occasional times in which they don't wish to listen, but the great thing about them is...they're nothing if not honest.  They'll just come right out and tell me;-)  Again, can any of us say we can't identify?  I've been in more than one business meeting over the course of my career where I was present in the room, but somewhere a lot more pleasant in my mind - like the beach!  All I was missing was the tan to show for it!

When I reflect on what I do, the kids whose lives I get to be a small part of, the families of the kids whose lives I get to be a small part is the most humbling thing.  Ever.  What an indescribable feeling it is to be in the midst of working with a student and see that 'lightbulb moment' happen....the moment that something clicks and they've GOT it.  Wide eyed gazes that scream "WHOA!", followed by a shout of, "I GET IT!" or a simple question of, "was it really that easy?" or sometimes, the words don't come.  At all.  They just sit with it for a bit, smiling in amazement:-)  Those are the times I choke back my tears, sit waaay back in my chair, maybe even throw my feet up on my desk (because that makes them laugh), smile, point at them and say, "that just happened...and you are awesome!" 

I've read Psalm 139 many times, but this week, after numerous 'lightbulb moments', I read certain portions of it with a new perspective:

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well... All the days ordained for me were written in your book before one of them came to be.  How precious to me are your thoughts, O God! How vast is the sum of them!  Were I to count them, they would outnumber the grains of sand."

It hit me.  If all the days of these students are written in His book, since they spend parts of their days at this particular time in their lives with me, then that must mean I am a tiny part of God's plan for them.  WHAT?  Whoa.  My response to this? 

**let's just say that I totally know what it's like to have the silent lightbulb moment**

For as long as the Lord wills, I'll do His work with these amazing kids.  What a blessing it is to serve them and their families.  What a joy it is to witness their victories.  What a gift it all is...every bit of it:-)


Tuesday, October 11, 2011

Who's It Harder On?

I've been thinking a lot lately about it.  Who's ms harder or my loved ones? 

I'm so deep. 

My personal opinion, and that's all this is, is that it's harder on them.  Not really my kids, because they've only ever known me with ms.  But my husband, my mother, my grandmother, and friends who "knew me when"?  I believe it's more difficult for them.

This has come out recently in several comments my husband has made in the midst of unrelated conversations.  For example, he expressed a feeling of urgency to get our "financial house" in order.  I thought he was saying that, because he was tiring from working all the part-time jobs.  Nope.  Turns out, he'd like to have the flexibility of moving into a home sans stairs.  What kind of challenge is that?  A house without stairs?  Come on!  Carrying a laundry basket upstairs is about the only athletic event I've got left.  Oh, lest I forget our recent purchase of a new refrigerator.  He chose a french door style fridge that was twice the price of the traditional one I chose.  Why?  He didn't want me to have to lean over to pull out the gallons.  I won that battle by countering with a fine "our financial house won't get in order if we take on debt" speech.  Obviously, our "financial house" has spiral staircases.  That oscillate.  And he's recently become overly careful of me.  His typical bear hugs are more like squirrel hugs.  When I asked why he's treating me like glass, he reminds me that I recently mentioned I'd been in pain.  Oh.  Yeah.  But I didn't mean...oh nevermind.

Telling my husband that neither of us are in control of what ms may do - is not of comfort to him.
Telling my husband that, if I get to the point where I can't make it up and down the stairs in our home, we could get one of those cool chair lift things - is not of comfort to him.  
Telling my husband that I need his hugs, just don't kiss me on the top of my head on account of how it feels like sharp objects stabbing me in the scalp - is not of comfort to him.

So what does he do?  He organizes the new refrigerator in an OCD-esque flavor.  My kids took me aside the morning after he did this and said, in all seriousness...pointing at the carefully aligned array of items:

kids: "Mom?  Dad said this refrigerator needs to stay just like this, okay?"
me:  "I'm sorry, I thought you said, 'Dad said this refrigerator needs to stay just like this'."
kids:  "yeah"
me  :::laughing, grabbing jelly out, spreading on toast, placing back on top shelf of main fridge:::
me:  "what's the proper order?"
son:  "jellies here, Daddy's jam there, condiments and such here, all the dressings go down there"
me:  "oh reeeeeeeeally..." 
son:  "Mommy, please.  Please don't do it."
me:  "we both know I have to, buddy.  We both know I have to..."

In place of my blackberry jelly?  The giant bottle of mustard.  The basset thought it was a great idea, too.  If I go down, I'm takin' him with me.  Proof's in the picture...bottom right;-)

MS, look what you've done to my refrigerator for the sake of all things good!  A special place for "Daddy's jam"?  (Refer to "jelly or jam" blog post of yestermonth)  This is precisely why I don't often share how I'm feeling with him.  I cannot adhere to such stringent refrigerator regulations.

Therefore...I shan't.


Monday, October 10, 2011

Mothering Through MS

Part of our In Service today at work was the study of the book "Shepherding A Child's Heart".  It basically tells parents how to lead their children in a "Godward direction", seeking to know the condition of their heart and pointing them in the right way.  It also speaks to what all that would look like for the Christian educator, which was the purpose of our study. 

As the discussions carried on, I couldn't help but feel like I couldn't fully relate to certain parts of the book or to what my coworkers were sharing.  What they were sharing...what the book was speaking to...were typical, every day examples of kids being kids.  Acting out, not wanting to contribute around the house, participating in a multitude of activities to the point of exhaustion, showing indifference to their surroundings, avoiding their work, yada yada. 

My kids? 

  • Have been helping around the house since they were about 5 and 4.  Why?  Kindly refer to the title of this blog.
  • Carefully choose extracurricular activities according to how many days/nights per week they would require.  Why?  Blog title.
  • Read people like a book.  If you're sad or don't feel well and want to go unnoticed?  Don't interact with either of my kids.  They'll know.  They don't have subscriptions to the psychic friends network...they just know.  I dislike that, because I can't pull one over on 'em;-)  How do they do it?  Again, blog title.

I'm not owning their compassion as the work of my husband and I.  Sure, we purposefully parent them and do our best to teach them how to live a life that glorifies God.  But honestly, they've always just sort of "had" it.  I mean, I remember growing up under the assumption that my parents were perfect.  Whatever they said was it.  They could do no wrong.  Ever.

My kids?  Learned early on how imperfect their mother was.  Between the headers I took down the stairs, the scene I caused at my son's kindergarten classmate's birthday party (really, shouldn't an ambulance be on stand by at a roller rink for just such an occasion?), the time I spent flat on my back in my failure of Avonex, the family vacations I spent asleep in the hotel room, the locking myself in a room when pseudobulbar moments struck, the field trips I spent in the ladies' room with a finicky bladder, the wreckage I caused whilst mowing grass on neurontin...need I continue? 

These were just a few of the things I considered as I sat and halfway listened to the typical, everyday household challenges that others shared.

My mind drifted to consider the way I'm greeted when I arrive home from work.  My son rushes to my car door, opens it, and asks if there is anything to be carried in.  My daughter has already put the dishes away and folded the laundry.  When I ask my son if he wants us to sign him up in an additional hockey or soccer league, he respectfully declines and says, "nah, that would be too much".  And the one that gets me every time...when they're feeling under the weather and drag themselves out of bed, shuffle downstairs for breakfast, and attempt to get past me and on the bus - which they don't succeed in - they say, "you do this every day, Mom.  Can't let a (cold, stomach ache, cough) keep me from school."  I tell them what I want someone to tell me.  "Go back to bed!"   

I can see that God is working something as ugly as ms out for good on some level.  It has taught my kids compassion, perseverance, and determination.  It's also taught them to look to the Lord for comfort and strength.  I'm almost compelled to write to the author and tell him his book is great and all, and that I love how he's trying to tell us to teach children to have this "Godward direction"...but that ms kinda beat him to it.  Because it's snarky like that ;-)

Friends, stay well:-)))

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. - Romans 8:18

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. - Romans 8:28

Saturday, October 8, 2011

Taking MS To A Ladies' Retreat

MS and I just got home from a lovely ladies' retreat at a local camp.  If you've never been to a retreat and it sounds like something really wacky, let me interject to's really not.  There are typically a couple of speakers who deliver a message, then you sing a couple of hymns, give some personal insights on a scripture here and there, eat food, drink coffee, stay up too late, rinse and repeat.

I've always attended this particular retreat but never stayed overnight.  I now understand why that was.  Guess who else comes along?  You betcha.  MS.

Over the past 12yrs of living with ms, my body has become comfortably accustomed to the 10 approximate feet that separates my bed from our toilet.  I'm blessed to say that my brain and bladder have formed an excellent partnership.  My bladder senses urgency and reports to my brain the following message:  "Wake her up.  Now.  Please and thank you."  My brain then advises my legs to swing to the side of the bed, where feet are told to shuffle and hands are advised to activate their Wondertwin powers...form of...curb finders!  I stumble through the dark and, instinctively, thud myself upon my padded toilet seat.  The flood gates automatically open, my bladder releases what it darn well pleases, and I make my way back to bed until the next communication.  It's become a well-oiled machine, really.

Until you're in a cabin.  50yds from the bathroom.  In 48 degree weather.  And have cabinmates.  Do I have to finish this part of the story?  If you have ms, you inferred that I wasn't quite making it to the bathroom in time.  Also, if you have ms and are sensitive to cold, you inferred that my bladder went into survival mode...increasing its typical "once an hour" emptying to "once every 20 mins".  My entire neck started to vibrate.  My right hand wouldn't stop shaking.  And that walk to the bathroom became longer and longer.  I decided to grab my suitcase and head to the car.  It was the only way to settle my CNS, to not pee all over my favorite sweatpants, and to ensure that my dear friends/cabinmates would get a decent night's sleep.

By the time I reached my car, I felt like the Terminator when he was short-circuiting?  Nothing was computing.  I put my heater on "MELT" and stuck my hands and face directly into the path of the vents.  It was 1:30am and I was dressed in pajamas (aka my husband's sweatpants, long sleeve t-shirt, short sleeve t-shirt over top, and fuzzy red socks).  I took a moment to pray to God for 3 specific things.  Please, Lord.  Don't let me be hit by a drunk, don't let a deer run out in front of me, and don't let me be pulled over.  I will never be able to explain this outfit.  He heard and answered. 

I made it back to camp in time for the first speaker, and thank God for that.  She took the stage and began her testimony of how her life has been "interrupted" (that was the theme, "Life Interrupted") and how God has brought her through it.  With strength and poise, she informed her audience that she was diagnosed with ms.  All that could be heard immediately following?  Were the cascades of gasps.

Geez.  That's not very comforting, right?  Kinda like when someone thinks they have it, so they come to me to say, "did you feel like this?  And that?  And did this happen?"...then, (praise God) they have clean scans and report back by saying, "I don't have ms!  I was hoping for anything but that!  That would be the worst thing ever!"  Once I was even told, "I'm so thankful!  I'm not ready for my life to be over!"  It was everything I could do to refrain from informing this excited gal that my life, the one I'm living with the very disease she was terrified of having, may be different...but it's far from over. 

Anyway, back to this fabulous speaker.  Several of her statements hit me right in the gut.  Things I experienced in the first several years of coming to terms with this condition.  Things I didn't wish to remember.  I identified with her every word, completely.  Common circumstances, similar symptoms, identical faith.  As much as I hate that she has much as I hate that anyone has much as I hate that I have it?  Is as comforting as it was to see such determination and perseverance in another ms'er, sitting upon a stage, speaking to 250 tearful women who collectively gasped at the sound of those 2 lower case letters.  I overheard a whisper of, "How does she do it?"  I knew the answer to that one:    Through He Who strengthens her. 

What an awesome way to spend my weekend.  My spirit is recharged!  I cherish the time I was able to spend with my friends!  And I have a new appreciation for my padded toilet seat!  I really do live a blessed life in so many regards.  It's funny how I can forget that sometimes.  It's equally funny that ms reminds me.  But what's not funny?  Is peeing in your sweatpants.  Okay.  Maybe that's just a little funny.  Because they're my husband's sweatpants.  If they were mine - totally not funny.

Be well, friends!