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 I...how 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:-)

http://www.healthcentral.com/multiple-sclerosis/c/19065/145685/nights/2

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 mistaken...my "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...

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!

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. 

:::shrugging:::

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... 

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 of...it 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:-)



 

Who's It Harder On?

I've been thinking a lot lately about it.  Who's ms harder on...me 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.

:-)

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

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 say...it'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 ms...as much as I hate that anyone has it...as 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!   

Pool Area Etiquette

I encountered this sign some time ago, but was reminded of it while contemplating the benefits of joining our local indoor pool so that I could exercise without risk of tripping and falling into traffic: 

Note to self:  If it hadn't happened...they wouldn't have needed to write it on a sign.

Clearly, "Do not run" and "No diving" have been superseded by "Do not swallow the pool water" and "Change diapers in a bathroom and not poolside".

Again.  If it hadn't happened, they wouldn't have needed to...well...you get the rest.

Mmmyeah.  I think I may stick with oncoming traffic.