Friday, August 27, 2010

Happy Anniversary, MS!

As the clock strikes midnight and the date changes at the bottom of my computer screen, I'm reminded.  8/27.  That was the date I heard the great news.  

On the morning of 8/27/2003, I clearly recall sitting in my car in the parking lot of the scanning center, trying to get myself together.  I was flicking the paper script back and forth with my fingers, staring at the writing.  Shaking.  And nauseous.  It all came down to that day.  Four years of avoiding the doctor's office until I could no longer ignore the fact that something was very wrong had culminated in prescribed MRIs of the brain, cervical spine, and thoracic spine.  Flick, flick, flick...

Inside the building was an open MRI machine that closely resembled a ginormous version of my Betty Crocker Easy Bake Oven from childhood.  I remember thinking that, then recalling how Mom threw it away.  Her reasoning?  "Do you know how long it takes to bake a cake with a freakin' LIGHTBULB???"  What I think really happened there was that I was trying to bake a creation, made a mess, Mom was in one of her phases where she was trying to quit smoking, and the Easy Bake was collateral damage.  That's my assessment. 

So once the scans were over, I was given copies for my doctor.  I got back to my car and immediately dug them out of their enormous envelopes.  I held my brain scan up to the sunlight and thought, "is this what brilliance looks like?  Ha ha ha...oh come on, this is no time for joking.  Whoa, the brain looks a lot like those things that used to fall out of the trees onto the road, those green ball-lookin' things that my cousin used to throw!  Hey.  What's that big black spot?  And that one?  And that, maybe they're supposed to be there.  Put these away.  You don't even know what you're looking at.  Aside from brilliance, perhaps.  Oh behave."  No seriously, these are the ridiculous conversations I have with myself.  I self-entertain.  That's okay, right?  Don't answer that, really.

Well, of course those black spots weren't supposed to be there, but boy did they help fill in the blanks.  While it was devastating to some degree to hear that ms was the verdict, there was also a sense of great relief.  Relief in finally knowing.  Because I have a way of creating all sorts of scenarios that are simply horrible.  Surely if I was walking into walls, falling, and forgetting passwords I had for years, I was dying.  Or I had a tumor, something like that.  So hearing those two little initials, which hit me as two HUGE initials at that moment, was awful-yet-not. 

I think of ms as something I'm having to learn to live with.  Like a bad roommate or something.  One that doesn't let you sleep, makes you pee a lot.........purposely unplugs your refrigerator so your food goes bad, throws her dirty clothes on your bed, smokes in the room all day when you're allergic to it, until you snap and throw her belongings out of the 2nd floor window, get thrown out of the...wait.  I've gone off topic.  Only consider the non-sleep and the peeing.  Don't pay attention to the rest... 

So Happy 7th Anniversary to you, ms!  Love ya like a heart attack! 

And a special thank you to my family and friends for supporting me in this journey.  God really does give us all we need, and the way He cares for me is often through each of you.  I am truly, greatly, and abundantly blessed. 

Surely goodness and love will follow me
all the days of my life...(from Psalm 23)

Thursday, August 26, 2010

Talking MS...

I should really have this ms thing down pat by now.  I mean come on, it's been 11 years.  I used to think I was pretty good at this chronic, lifelong disease thing?  Yeah, no.  I still can't balance it all out.

What I mean is...what to share, when, how much, etc.  Writing these posts is very therapeutic, which is a great thing!  And I hope that, along the way, others have been blessed by something they've read.  I've usually got myself well grounded...but then?  Something happens and bang!  I feel disrespected or not considered, "temper temper" kicks in.  And I say things like, "this is what sucks about invisible symptoms!" and other, countless stupidities.  I instantly forget how blessed I felt during that day's "morning inventory".  How good it felt to hear my alarm, see the clock clearly, swing my legs over, feel the floor with my feet, and rise up from the bed, balanced on my own 2 legs.  And from there, being able to walk to the bathroom without slamming my arm into the door knob.  Because all those things aren't always in alignment.  Forgive me, Lord, for my ungratefulness.  And selfish attitude.

See, only I know how I'm feeling.  In my day to day life, I really don't make a habit of sharing.  I drag myself out of bed - after full inventory - I load up with coffee, and I get myself to work.  I pass my coworkers in the hall and exchange pleasantries.  "How are you, today?"..."Great!  And you?"  Because come on, I don't want to be "that" person.  You ask how they are as a formality, and end up getting a whole lot more than you bargained for?  Everybody's got stuff.  Everybody.     

I can't wear a special sign on my shirt that says, "today is a bad ms day, please be nice to me.  Please carry heavy things for me.  Please don't make me walk up or down any stairs.  Please don't stand to my left, because I see 2 of you, and 1 of you is really okay".  That's simply too much to wear on a t-shirt.  Plus, I wouldn't want the attention of kind folks being all, "omg...I am so sorry you're having a bad ms day.  I will carry your things, bring your car around, and stand to your right".  I wouldn't want anyone to do anything special for me, because I wouldn't want to put them out.  But sometimes I secretly wish people would do things for me.  But then I don't.  And then I do.  See the problem, here?  The problem is me. 

So while I don't want people to think of ms when they think of me, I seem to expect them to be Miss Cleo and have a psychic sense of my capabilities, which change by the day.  Sometimes, I wake up ready to take on the world and do it all to the glory of God!  Other days, I want to pull the covers up to my nose, close my eyes, and pretend the last 11 years were just a lengthy nightmare.

It's a hard balance, this "talking ms" deal.  Because I trust my boss, I've regretfully shared with her how I might feel on any given day.  In turn, she made certain to give me a dedicated workspace where I'd only have one small flight of stairs to travel up and down, rather than sticking me on the 3rd floor of a building clear across the campus.  And let me tell you, that felt incredibly...good:-)  Had I never told her, how could she have known?  I'd be on the 3rd floor, tripping up and falling down the stairs, exhausting myself with navigating my workplace and not having anything left in my tank to invest in actual work.  With only myself to blame.  It's a tricky balancing act.  I hope to master it someday. 

Maybe there is some validity to the t-shirt idea.  Because who doesn't enjoy reading those, right?  It wouldn't seem like I was complaining or being whiney, because it's like...hey, it's just a t-shirt!  Hmmm, it just may work:-)

Tuesday, August 24, 2010

Is It Fall Yet?

This break in the weather has induced some sort of elation, euphoria, or otherwise intense feeling of happiness.  I really can't wait for fall.  I love fall.

Windows open, dehumidifiers running, puffy clouds, and's not 90+ degrees!  Football is back.  Wondertwin powers active, form of hockey mom!  I'm looking ahead to fall foliage.  Hayrides.  I attach the little trailer to the mower, throw leaves in it, hop in, and make my husband drive me around the yard.  He has that familiar wrinkle to his mustache throughout the whole drive until he finally asks, "are you done yet?"  One more time around, sweetie...just one more time.  And pumpkins.  I really like pumpkins.  Because what can't the pumpkin be?  A decoration, a pie, a candle, a spice in my coffee, a cheesecake, a jack-o-lantern?  Man.  I love fall...

Another plus to fall?  MS goes into hibernation.  Not a full out hibernation.  Maybe it's more like a restless sleep.  All the same symptoms are present, but the annoyance factor is much lower.  I sleep a little better, I feel a little better, I see a little better, I walk a little's really the best time of year:-)

I love throwing on a pair of old comfy jeans, ones from when I was a lot heavier, because they have extra room in them. I have a few favorite sweatshirts, the kind I get lost in.  I change my hair color from summer's honey brown to fall's highlight/lowlight mocha, honey, and chocolate brown.  That looks natural, right?  And there's no pressure of feeling as if I must shave my legs 2x/day...

Aside from all those wonderful things, my absolute favorite?  The sights.  I find the changing colors of the leaves against the blue/gray skies indescribably beautiful.  I soak in every color and imagine heaven being all of that x 1000.  In fact, sights are always a priority for me.  Just yesterday, the skies were nothing but clouds.  Puffy white, shady gray, billowing bluish clouds.  My kids think I'm nuts, because I'll just stand and stare, taking in every beautiful shape, color, and scene.  "Mommy, we're going to be late."  Yeah.  We are.  And praise God they don't know why I'm gazing so carelessly and intently.   I pray on a daily basis that they never do.

Cinderella says you don't know what you got 'til it's gone.  Hair metal Cinderella, not the fairy tale chick.  And that's very true.  I've been made to realize that my eyesight is a gift.  There are times my field of vision contains black floaters, some quite large.  At one point, I lost the ability to see color in the bottom half of my field of vision.  I've had squigglies in my periphery, blurries, double vision, etc.  The blessing is that it's always resolved in its own timing.  As scary as that can sometimes be, I'm thankful for those experiences.  They've helped me to appreciate all of the beauty around me in a more complete and comprehensive manner.  In fact, ms has allowed me to appreciate lots of things in a more complete and comprehensive manner.  My family, my friendships, my abilities, even my un-abilities.  Some say I'm "intense", and they're right.  I intensely appreciate and enjoy my surroundings.  Each day.

From the highest of heights to the depths of the sea, Creation's revealing Your majesty. From the colors of Fall to the fragrance of Spring, Every creature unique in the song that it sings.

Sunday, August 22, 2010

A New Symptom? This Is So Not The Time...

I haven't had a "new" symptom in a very long while.  And this is so not the time.  Then again, there really is no convenient time for ms to throw a tantrum. 

For the past few days, I've noticed that a flare may be a brewin'.  Here's the recipe:

  • 1c. electric shocks in the right side.  Head, shoulder, face and thigh...face and thigh! 
  • Add 1/4c. significant tremors in right hand. 
  • Generously sprinkle increased bladder malfunction (it's not disfunction, in my opinion, when it beckons me and then fails to deliver...that's obvious malfunction). 
  • Shake vigorously and pour over "Emotional Bungee Jumping" (EBJ).  That's my own terminology, do you like it? 

EBJ is not like "emotional lability", which is where I'd laugh at a completely inappropriate moment, or cry for no reason at all.  This self-titled phenomenon can best be described as emotions which start up high, then plunge down low...come up high...back down low...little less high...little less low...repeat...'til you're on level ground.  Where am I at present?  I've just jumped.

God has blessed me, however, where my struggles with EBJ are concerned.  The people who surround me are quite amazing in their own, unique ways.  'Cause hey, I'm not Staples and it ain't "easy".  There are times my theme song could be "Hand In My Pocket".  You know, "I'm sad but I'm laughin', I'm sane but I'm overwhelmed, I'm lost but I'm hopeful baby!" (not so much in that order)  My husband and closest friends know this all too well.  I really do try to make deliberate, purposeful attempts at being completely in touch with my inner Staples, but don't always succeed.  And one thing I never want to be is an annoyance or burden.   

As I was processing all of that, a new, invisible symptom dropped in. Hugely unfortunate surprise.  It's one that I'd heard and read about frequently, but was always thankful to have not experienced over the last 11 years.  Darn.

So what's a girl to do?  Well, I'm not completely sure.  I do have a great book to read to redirect my thoughts, courtesy of my friend whom I went away with this weekend.  It's about loving and serving others as God commands.  Guess I can't be doing that if I'm all kinds of bummed out over a new symptom.  Even if it's one I always hoped wouldn't come.  Like totally hoped it wouldn't come.  Totally.  Gag me with a spoon.  Like... 

Oh look!  Here comes my old pal, Insomnia!  Another plus to my fancy new book...I've got a "light" to keep me busy in the darkness.  And to keep my mind off wondering whether or not this new symptom will stick around.  'Cause it's like Joyce Meyer can't sit around thinkin' about your sickness.  You'll just be sick!  I'll hang my pink Phillies hat on that.

"Everything's gonna be fine, fine, fine"...

Saturday, August 21, 2010

Here In My Stall...

I thought of this song today as I spent approximately 20 minutes in a public restroom, staring at the floor, counting the tiles, listening to all the grumbling ladies whine and moan about having to wait for an open stall.  There were probably 30 stalls, so I'm never overly concerned in that sort of setting.  Not as if it would help anyway.

I began to snicker in my stall, because come on. Exactly what are they gonna do about it? Nuthin'. Because I'm in my stall.  And then it hit me.  I heard the uncanny organ music in my head.  I began to craft my own lyrics.  My bladder enjoyed the song so much?  It worked!  It went something like this...

Here in my stall, I feel safest of all, I can lock my tall door, it's the only way to stalls (ba da, ba da ba da...clap)

Here in my stall, I am trying to pee, and I know you're wait-ing, but this might take a good stalls (ba da, ba da ba da...clap)

:::musical bridge:::

Here in my stall, my bladder finally works, and I smile ear to ear, because I'll soon geeeeeet out...of stalls (ba da, ba da ba da...clap)

Here in my stall, I stand to button my jeans, what's that sensation I feel, come on I gotta stalls (ba da, ba da ba da...clap)

:::musical bridge:::

:::lots of organ and clapping:::

Thursday, August 19, 2010

My Mommom Is Cooler Than...

I remember saying that so often in elementary school.  "My Mommom is cooler than..." insert cool thing.  She was so cool that she would only be called "Mommom".  She always said, "I'm too young to be a grandmother, a grammy, and nobody better ever call me nana or nanny."  Duly noted, Mommom...duly noted.

She never takes crap.  Ever.  Back in her younger days, she put her stiletto shoe to the head of an ornery customer who just wouldn't get the hint.  She won several "best bartender" awards.  She held down 3 jobs in fine dining bartending to support a family consisting of her, my mother, and my aunt (God rest her soul).  She was also a clothing model.  She always has cool cars.  When I was little, she drove a white Vette with t-tops.  My elementary school classmates would be in awe to see a woman calling out, "Tina!  Over here, honey!"...I would yell out, "MOMMOM!"...nearly dropping my books to the ground.  It was always a pleasant surprise.  Tops out, off to McDonalds for after school milkshakes.  We went to all the Corvette shows.  She bought me a t-shirt to wear that said "Wrap Your @$$ In Fiberglass".  I think I was 10?  Yeah, about 10 or so...

Then there was the time a man was following her too closely and happened to be pulling into our same parking lot.  She advised me to stay in the car, she'd be right back.  She said something to him, he gave her an attitude, and she tore off after him yelling, "I will slap the $^!# out of you!"  That was the first time I saw a man run from a woman. 

Going anywhere with Mommom was an adventure.  We used to have season tix to Eagles games.  She once removed the hat of a Redskins fan and threw it over the balcony of the 2nd level.  Remember hearing about the snowball game vs Dallas?  We were there and yes, Mommom threw a snowball.  Beach travels were hysterical.  We approached one of those circle intersections?  She didn't know what to do, so she put her hands over her face, screamed, and went...straight across.  My Mom was trying to steer from the passenger's seat.  One night in Atlantic City, we noticed a few brisk walking security guards heading to a particular area of the floor.  I looked over at Mom, who had a very familiar look about her.  The thing with Mom is...when Mommom's acting up, she gets real quiet and her eyes get real large?  I asked what was going on.  She said, "Mom is over there."  'Nuff said.

My dating days were interesting.  Mommom was loaded with wisdom.  Don't date this type, they cheat.  Don't date that type, they start out nice but always end up nasty.  I then recall a very painful break up with a particular boyfriend.  One of those things where it was simply the end of the world as you know it?  I talked to her about it and she said, "I never wanted to tell you this, but I always thought he was too stupid to be with you.  You're smart.  They make t-shirts that say 'I'm with Stupid'.  You don't want to have to wear that.  Plus, he's built funny.  He's not going to look very nice when he's a grown man."  To which I said, "you've said all that before, Mommom."  To which she said, "I did, didn't I..."  

When I was in college, her husband purchased a bar.  It wasn't a nice bar.  In fact, it defined "dive".  You walked downstairs from the sidewalk level?  Yeah.  And certain things occurred there that shouldn't be discussed.  It wasn't her choice in locations, but what did she do?  Brought a pressure washer in, rolled up her sleeves, and scrubbed the place top to bottom.  She tore up the zebra print tile floor and carried it out for trash.  The neighborhood drunks came by to take pieces of it home as souvenirs.  It became somewhat of an upscale establishment in a short time.  We served the best chili in town and were more known for her incredible recipes than what was served from behind the bar.  I was in charge of choosing the beer flavors, and I had better get it right:-)   

Watching my kids with her is perhaps the most joyous thing ever.  They still aren't quite used to expecting the unexpected with her, be it actions or words.  But once they realize that yes, she really just said that, they crack up laughing just as I always did.

All this to've got to get better, Mommom.  There are literally hundreds of people praying you through.  Rest in the Lord and know how much you are loved.  But this time when you come home, because I know you will, we're grabbing that Mexican dinner we talked about.  Don't worry, I won't go without you...

Sunday, August 15, 2010

The True Meaning of The Song "Automatic"

My old friend, Insomnia, and I are up late again.  Oh what to do, what to do?  Make a cup of Constant Comment tea, hop on facebook, and listen to some good ol' fashioned 80's dance music! 

I was never a fan of "freestyle", which is what most of the 80's dance music was comprised of.  It gave me palpitations.  But just as I was ready to switch stations, I heard the familiar beat of the synsonic drums.  I can name that tune in 2 thuds, Jim!  "Automatic" by the Pointer Sisters!  YAY ME!

I am SO knowing every word...singing to myself (and my dogs and my cats) and it hits me.  This song is not at all about what I thought it was back in my junior high days.  Back then, I thought it was about some "it" guy.  Go back with me on this.  He sported the parachute pants, thick shoe laces in checkerboard style, and shell-top Adidas.  He was an avid break dancer.  Throw a box on the floor and watch him go!  Of course he had a Members Only jacket, maybe more than one.  Not that I knew anyone like that, I'm just guessing.  Totally guessing.  Of course that's what the song meant, right?  Wrong.  This song is!

Here are the lyrics:

Look what you're doing to me

I'm utterly at your whim
All of my defenses down


Your camera looks through me
With its X-ray vision
And all systems run aground

CT scans and've got my attention...

All I can manage to push from my lips
Is a stream of absurdities
Every word I intended to speak
Wind up locked in the circuitry

OMG YES!  And sometimes I even stutter!  Others, I try not to say anything at all!

No way to control it
It's totally automatic
Whenever you're around
I'm walking blindfolded
Completely automatic
All of my systems are down
Down down down

Clearly they're referring to ms.  There is no way to control it.  I'm not so much blindfolded as I am looking through black floaters.  But yeah, I'll respectfully differ.  They're the Pointer Sisters!  Who am I!  And sometimes walking is automatic, because I can't feel my legs or feet.  If I guess wrong as to where that foot is or goes?  Down, down, down...

What is this madness
That makes my motor run
And my legs too weak to stand

It's called L'Hermittes Sign and paresthesia!  And thankfully someone is acknowledging the vibrations.  I thought I was the only one with a motor running! 

I go from sadness
To exhilaration
Like a robot at your command

Can I get an amen?  Thank you, Pointer Sisters, for your excellent description of emotional lability.  I'm one of the only people I know who will bust out laughing at VERY inappropriate times.  Very...

My hands perspire and shake like a leaf
Up and down goes my temperature

I'm not sure how much of this is ms and how much is pre-menopause.  Both of which I'm working with.  Again, who am I to question?

I summon doctors to get some relief
But they tell me there is no cure
They tell me  (BA DUM DUM)  Oh come on, I'm not the only one who hears those drums immediately following that line...

I recall summoning many doctors, even those at the Cleveland Clinic.  They all said the same thing.  "You've got ms.  There is no cure."  BA DUM DUM!  Well thankfully none of those fancy docs ever said, "ms has you"!  That woulda been really bad...

Souuuuuuuuuuuuuuuuuuuuuul TRAIN!

Friday, August 13, 2010

Ah Yesteryear...

Once in awhile, pleasant reminders of yesteryear will come to mind.  Could be sparked by a song, a random reference to the 80's, my case...a phlebotomist that cares for me at the hospital.  And I don't know why I remembered this all of the sudden, or why I'm choosing to post it, but I'm gonna.

The morning of my hospital stay, I woke to, "good morning!  I'm here to take your blood!"  I seriously love nurse humor.  I opened my eyes and thought...heeeeeeeeey, I know this guy.  This is Chris, my junior-high-boyfriend-turned-high-school-and-college-BFF!  I sat up like a shot!  I then realized?  My gown!  Totally open.  Cover it up, sister!  I haven't seen Chris in nearly 20 years.  This is NOT the way to reunite.  Stickies and wires and "business", oh my!

I couldn't stop staring at his face.  I think it made the accompanying nurse slightly uncomfortable, because she said something about how the female patients often swoon over him, saying that "he's the guy who comes in the night with the shaggy hair..."  No no, honey...I'm not checking him out.  I'm retro'ing!  I'm heading to a place without lesions or abnormal EKGs!  And you're in my memory.  Step.

I thought about our long talks over the years and how we kept in touch despite my changing schools twice.  We "cruised" in our cars.  I loved to drag race any and everybody.  Be it a tubbed out Camaro or K car, I didn't care.  He'd yell for me to slow down and I'd ask exactly how he thought I'd win if I did something stupid like that?  He reminded me that my father had "eyes" all over town and I'd get caught.  Yep.  That happened.  He gave me my first motorcycle ride.  I was terrified and screamed at him to SLOW DOWN!  He informed me that he was doing 30mph and would end up laying the bike down if he went any slower.  Going fast was great if I was driving.  Always a control freak.   

My mind then took me to senior week at the shore.  I was there with a really fun group of girls, but ended up finding Chris out on the boardwalk.  We decided to pull an all-nighter, sit out on the beach, and watch the sun come up.  I had never experienced a sunrise and he said it was something I just had to see.  So we passed the time laughing and talking, contemplating life and where it would lead us.  We agreed it was scary growing up.  He was going to Temple to be a pharmacist.  I didn't know what I wanted to be and was split between 4 colleges, depending upon which would give me the most money to play sports.  See?  No focus or attention span in this girl. 

We talked about the relationships we were in at the time.  You know what it's like, you're 18 and so sure you're in love with that person.  But not?  We openly debated what love was if it had to be all o' that!  I remember sharing a deep, dark secret.  I was kind of intrigued by this guy I had recently met.  He was shy, very sweet, and had the kindest eyes.  Met him at the custom wheel shop.  He held the door for me.  I wasn't used to chivalry unless it came from Chris.  I felt kinda like...cherished?  Chris said something about how I shouldn't write that possibility off.  I said something to the effect of...let's not get carried away.  We wrote our names in the sand as the sun came up.  He was right.  It was truly a beautiful sight, seeing that sun come up over the water.  Nothing else mattered.  No fears, no pressures of college, just experiencing the beauty. 

And here we were, 20yrs later.  Him as a phlebotomist, me as a...patient.  Blood draw was over, his name tag became visible.  "Chris".  Omg omg omg...what do I say?  Lest I forget the unfortunate exposure just a few moments prior?  Ugh, go for it.

me:  "can I ask?  I...I think I know you."
Chris:  "oh no!" - insert nervous laughter on his part - "go ahead!"
me:  "are you Chris (last name)"
Chris:  "nope, I'm Chris (different last name)!"
me:  "really?  And you're sure about that?"
Chris:  "ha ha!  Yes, sorry!"

Oh, don't be:-)  It sure did feel nice to escape that hospital bed if for just a few minutes in my own mind.  I haven't been to the beach yet this year, so it was nice to find myself there, though circa 1990, freezing to death in the nighttime sea breeze, wearing one of those burlap-esque pullovers that were ridiculously uncomfortable.  Underneath, a thermal shirt that changed colors when you put your hand on it.  A pair of Oakleys flipped up on top of my head, because they were accessories by night, functional by day.  Laying in the sand, staring at the sky, talking all night with my BFF, before the term became popular.

I was so hoping he was "the" Chris.  I wanted to tell him that the guy I had met at the custom wheel shop?  Shy, very sweet, kind eyes?  I totally got carried away.  I married him:-)

Wednesday, August 11, 2010

Jillian Michaels

I used to like Jillian Michaels when I watched Biggest Loser.  She has the kind of personality that I relate to.  Funny thing about that show is that I quickly realized watching it...makes me want to eat.  No seriously, I would sit down and have a bowl of something in my hands within 10-15 minutes.  Maybe my subconscious was convincing me that these poor sturdy folks were running on empty, sweating half to death, and if I ate a bowl of Frosted Flakes, I was somehow helping them succeed?

Anyway, I needed an alternative to walking a couple of miles each day.  This summer's been pretty brutal with heat.  Yeah I know...duh, it's summer, it's hot.  But ms doesn't enjoy heat and takes it out on it's equally bull headed partner, moi.  So I sat down and checked out some "on demand" workouts that our cable company offers. 

I no longer like Jillian. 

I got to the 3rd exercise and began to ease up, because my legs were cramping?  And she got on my case.  "You can't rest, this is a 20 minute workout!"  So I listened, reluctantly, pushing through the pain.  Another exercise down and she comes at me with jumping jacks.  With cramping legs?  She's nuts.  I stopped and decided to sort of jog in place.  Again, right on cue, she got on my case.  "You have to stay with this, you can't expect your body to change if you rest!"  To which I yelled, literally...

"OH COME ON, JILLIAN!  My legs are cramping up, give me a BREAK!"  I was so frustrated that I was ready to turn off the tv.  Oh temper temper.  And then she said something about how she cares...about me.  Oh I get it.  Push me to the breaking point and tell me you love me?  Come on, Jillian.  I know that game and how it ends.  You don't know me.

Guess what?  I acknowledge your multi-level black belt and fitness guru-ism.  But this is me.  With the remote.  Who's in charge now?  :::click:::

See you tomorrow?  Well...alright.

Jillian says if I do this workout for 30 days, I'll notice "a change".  She never said what the change would be, but I'm up for an adventure.  I have a 20yr reunion coming up in October.  I will rest in the fact that my former classmates will approach me that night to say, "I don't know what it is about you, Tina?  I can't help but notice...a change!"

Tuesday, August 10, 2010

My Kids and MS

I remember how one of the first things that went through my mind when I was given the diagnosis kids.  The "omg" was threefold.  1) Would they get it.  2) Would it change my definition of "mother".  And 3) Would I be a burden to them.  Thankfully, at that moment, I was being held tightly by dear friend/chiropractor.  And she was saying, "this doesn't change the mother you will be, and your kids aren't going to get this".  Hmm.  A subscription to Psychic Friends Network?  Great instincts?  Or a deep knowledge of who I am and, therefore, what my greatest fears would be?  I'm going with the latter.  She's good, what can I say...

That was 7 years ago, nearly to the day.  And I'm not even someone to remember dates of things, but I remember that one.  I will forever be grateful for the compassionate manner in which she delivered that news.

So my kids.  They're 12 and 11 now, and have never known me outside of "living with ms".  I began with symptoms immediately following my son's birth.  Because I was brought up in a family that avoids doctors like the plague, I battled symptoms until I could no longer ignore them.  But when walking for exercise turned into falling in ditches and losing full feeling from the waist down, it was pretty much time to face the facts.  Four years later, it occurred to me that somethin' was up.  August 2003.

I got to thinking about what my kids have seen over the past 11 years.  Early on, they saw me sleep...fall...sleep...trip...sleep...hurt...and sleep.  Then, while on the medicine for 6 months, they saw me sleep...fall...sleep...spew...sleep...hurt...spew...and spew.  Present day, they see me a pee.  I'd rather pee than sleep, pee than spew, and work than pee.  So I guess I'm doing alright by my own standards?

My daughter and I were having a deep convo the other night.  Earlier in the day, I had the opportunity to help someone in the grocery store who was living with ms...very visible symptoms...and my kids happened to be along with me.  My daughter asked if I would "get like that".  Without carefully thinking out my response, I laughed, shrugged my shoulders, and said, "heck if I know!"  Emotional lability?  Maybe, and very poor timing.  This is the first time she's ever opened up to me about HER fears, and I gave her the equivalent response of a hot air balloon...ablaze.  Her face dropped and she looked about 2" from tears.  Dummy.

I regrouped.  I didn't have to grow up with a "sick" mom.  Mine?  Was flawless.  Sure, she had things going on, but I never knew about those until I grew up and wondered how in the heck she kept that all in check.  In my head, I asked the Spirit to do the talking.  Obviously, I blew it a moment prior.  So here's what came out of my mouth...

Only God knows what's to come of any of us.  If we spend our time worrying about what will be, we aren't going to be effective for Him.  If we focus on our circumstances, we can't focus on Christ.  We can't be like Peter, walking toward Jesus in faith, but then being fearful and looking down at the water.  We'll sink.  We can't shine a light if we sink!  Pretty good stuff, right?  Yep.  I could see the worry leave her beautiful face.  But then I spoke on my own.  "And besides, if I ever do have a problem with mobility?  I'm getting a Hoveround, and I'm going to get Daddy to do something to it to make it really fast, because one thing I have always loved?  Goin' fast!"  Dummy.   

So all I can pray for is the right words.  I find that most of my journey with this unwelcome partner is making others be alright with it, rather than making myself be alright with it.  And I guess that's the blessing.  When I'm focused on others, I can't focus on myself.

Sunday, August 8, 2010

Getting Called Out

I had a "moment" while preparing to undergo a test in the hospital.  The moment was the equivalent of an adult temper tantrum.  And I was quite satisfied with my tantrum, until...I got called out.  Here's what happened.

I was happily resting in my hospital bed, watching the daily morning Joyce Meyer program, when an overly tall woman appeared at my door with a wheelchair.  "It's time for your stress test".  So I asked for a minute to get my sneaks and lady undergarment on and I'd be right there.  When you're built like me, you don't do anything physical sans lady undergarment.  "Bring those along, we have to get you down there so they can get the injection going."  Do what now?  A nuclear stress test?  Nope.  Not going.

"Ma'am, they're waiting"..."not going"..."ma'am please"..."nope"..."please just let me take you downstairs and they can answer your concerns"..."nope, if I go down there, they're gonna make me do it and I'm not doing it.  I'm allergic to everything, see my bracelet?  They're not putting radioactive crap in me.  What if it gives me cancer?  I already have ms, I don't want cancer on top of that"..."ma'am, you are not going to get cancer from a test" walks the girl to take my blood pressure...176/110..."your bp is very high, please try to calm down"..."I'll be calm when that wheelchair goes away!" (pointing firmly)  My chest went from chest discomfort to chest pain instantly.  Lots of pain, radiating into my jaw and left arm.  Eventually, a doctor came and talked me into getting in the wheelchair. 

I arrive to the treadmill room, shaking and with very little feeling in my left arm and hand.  "I'm not doing that test".  Control freak.  Temper temper.  The tech entered the room to explain, at great length, how not harmful this test would be.  I told her I needed to use the bathroom, needed to pray, and needed calm down.  That's when I got called out.

"Do you live your whole life in fear?" 

My response?  Crickets chirping...

It turned into this huge conversation.  She said...we've all been through stuff.  The lady who was administering the test?  Two time cancer survivor.  My 40yr old roommate I had just left a moment prior?  Stroke.  I had just been talking to her about God and blessings and provisions previous to the arrival of the tall lady w/wheelchair.  There's that compartmentalization again.  I was, in a sense, ministering and comforting on one hand, confident in my understanding that God is in control...but instantly transformed into a weenie at the sight of the tall wheelchair bearing lady.  Maybe it at least gave her a good laugh? 

If you read the last post, you know I went ahead with the test.  And toward the end of my very brisk walk, I received a humorous word of support from the tech.  "You're a big girl now, Tina!"  That brought a literal LOL from me, the doctor, and the administering lady:-) 

Reminded me of the times Mom would say things like that to me when I was a little girl, and any opportunity to retro is welcomed.  First time on my tricycle.  First time on a skateboard, albeit seated.  First time on my big girl bike.  First time on my K-Tel skis.  First time I whacked the wiffle ball over the fence and into the neighbor's pool with my fat bat.  How does that seem like yesterday? 

We really do go through stuff, don't we?  I remember when my biggest concern was forgetting my spelling book in elementary school, if that pimple would clear up before jr high school pictures, or if he thought I was cute in high school.  Today's concerns seem so much bigger.  But as my grandmother has shared, they only seem big.  When I get to be her age, I'll wonder why I wasted my time worrying.  Keep in mind, she's one of the biggest worriers I've ever met.  To which she says, "yes, that's what I'm saying..."  Mmmmyeah, I don't know either.  Maybe compartmentalizing is genetic?

Just goes to show that I'm such a work in progress.  I've never proclaimed to be anything more than that.  Nowhere near where I need to be, but a whole lot farther than where I started.  Now if I can only focus more on the journey than on the circumstances?  I might actually be gettin' somewhere!


Saturday, August 7, 2010

Taking MS To The ER

I took ms to the ER on Thursday night.  It was glad to come along, 'cause the visit had nothing to do with it and everything to do with chest discomfort and a migraine.  Little known fact about ms?  It's quite jealous and, therefore, has to be noticed.

When I get a migraine, the first thing I lose is my ability to walk normally.  My legs turn to not-quite-done jello.  I must be deliberate with each step.  I shiver uncontrollably.  I hold the side of my head that is splitting apart, I shield my eyes with the other, and I pray, sometimes aloud.  Thursday night, I didn't so much go to the ER for the headache as I did the jackhammer guy in my chest and the heart rate that was more in synch with techno music than the usual neo-soul. 


I stood and nearly sat back down.  Come on, legs...all you gotta do is get from this chair to a bed, and all will be well.  "Are you alright?  Do you need a wheelchair?"  The right answer was "no" and "yes".  Instead?  I said "yes" and "no".  I explained that, when I have migraines, my legs are the first to go.  That way, the nurse would know I wasn't drunk.  'Cause it looks a lot like The Drunk Walk.  Swaying, overly thought out steps, and holding onto whatever's near.  Well, and a lot of laughing.  But I wasn't laughing. 

Nurse:  "so you're here with chest pain?"
Me:  "not pain, discomfort"
Nurse: "do you have pain radiating to your jaw, left arm?"
Me:  "I have pins and needles there, yes"
Nurse: "do you have numbness and tingling anywhere?"
Me:  "yes, in my arms and legs, hands and feet.  But I also have ms, so I never know what's what"
Nurse: "you're probably staying, you know that, right?"
Me:  "I'm not stayin'"

In came the EKG cart.  Bring it on, Sticker Fest!  I kick the crap out of those every time.  Lay nice and still, blink eyes twice, paper prints out, and out I go.  So sticker me up, sister.  I'll just need to know that the chest discomfort is no biggie, take a little somethin' for the migraine, and back to my kids I'll happily go. 

But I couldn't just go and, in fact, everyone in the ER seemingly forgot about my migraine, including me, when the doctor came in the room to advise me that there was an abnormality in my EKG.  Crap.  Looks like I'm stayin'.

My first reaction, after I got over the initial shock, was to ask my Mom to hand me my phone.  I have a small team of prayer warriors that I needed pronto.  It was way too late at night to call them, so a text had to do.  Mom was trying to process what was just relayed, while I wrapped up my text, confidently closed my phone, handed it back and said, "there.  Everything's going to be fine now."  I truly believed that when I said it.

I was instantly transformed into Jaime Sommers between the wires and equipment and constant care.  I slept approximately 5 minutes throughout the night.  Wasn't allowed to eat or drink, due to a stress test scheduled in the morning.  Oh that's not good.  MS likes to be nourished, or it takes it out legs.  Again with the legs.  Need my legs to do the test!

I stood to board the treadmill, which is quite a step up for a shorty like me.  Legs were shaking and feeling very weak.  I knew I'd better start praying, so I lowered my head and asked God to walk that treadmill for me, 'cause I couldn't do it.  "Okay, go ahead and start walking, Tina."  Mmmmkay...

3 minutes later, it elevates and speeds up.  And my legs got...stronger?  Another 3 minutes, more elevation and speed, legs still strong.  3 more minutes and I'm nearly running!  It felt...GREAT!  I had been joking with the cardiologist previous to the test, so we were BFFs by this time.  He stood there relaying the info to me, "look at that!  No arrythmia, what a healthy heart you have there!"  All the better to love you with, my pretty...

Thankfully, I went home with the fancy "label" I arrived with.  MS.  I'll keep it as my one and only.  There really wasn't a dx for the jackhammer guy.  He may return, he may not.  But I'm not going to sit around and wait.  I was never that girl... 

Praise God for His healing touch.  Thanks for prayer warriors, family, and friends who love and care for me so very much.  Thanks for an excellent team of medical professionals who provided compassionate and fantastic care.  And thanks for the best Mom ever.  Ever.  Even though she lied to the doctor when she said there was no family history of stroke, and she had one just a few years ago.  I waited 'til he left the room and said, "I like how you lied about your stroke, Mom."  We both had a good laugh over that...

Thank you also to Pretty/Stylish Friend, who brought me a vanilla bean/coffee coolatta.  And who hopefully looked away as the nurse was removing my stickies from my chest and side, lifting my gown, exposing too much information.  But the way I see it, we'll be dear friends til our days here run out.  It's only a matter of time 'til one has to see the worst parts of the other.  Congrats, PS Friend.  Your time has passed.  You're welcome.

So while I don't feel 100%, I at least know what it's not.  I can live with not knowing the cause.  The only thing left to be concerned with to cover the bill that should arrive in about 30 days.  Oy vey.

Tuesday, August 3, 2010


While the title of my blog is "MS Keeps Life Interesting", that's not all.  The following events occurred from approximately 8pm-8am.  Like "24", but not nearly as predictable.  Let's call it..."12"

8pm - just getting back from my 2mi walk and, this time, have lost feeling in fingers rather than legs.  Thanks for keepin' it spicy, ms!
8:01pm - son tells husband that his dog has a tick on her ear.
8:05pm - son tells husband that his dog has a tick on her ear.
8:06pm - I ask son if Daddy ever addressed tick on dog's ear.  Son says no.
8:06:03pm - husband is missing.
8:07pm - husband is spotted in backyard with starter fluid
8:07:02pm - I ask husband what he is doing?  "Underground bees nest"
8:08pm - I contemplate if we currently have the $150 in our checking account to cover an ER copay.
8:20pm - husband hurries into house with 5 beestings.  No, 6.
8:21pm - stray bee surprises the household occupants by flying out of husband's shirt.
8:21:02pm - 4 cats and 3 of 4 dogs spring into action in the attempts to catch bee.  I begin yelling, "get it before it stings Fred!"...because the Basset is anaphylactically allergic to bees.
8:30pm - husband obliterates bee with bear paw-esque hands.  In the process, nearly destroying lamp.
8:32pm - husband goes to bed.

6:37am - let dogs out.
6:50am - son's dog cries out and comes flying toward the sliding glass door.  I get it open in time.  She jumps on sofa, yelping.
6:50:22am - I notice bee stuck in between fold of rear leg.  I approach dog, dog pees all over sofa.
6:50:57am - I get dog back outside and flick bee with power flick.  Bee laughs.  I heard it.
6:52am - after repeated flicks, bee gives up and flies away.
6:53am - I call husband to advise that Pyromania 2010 was a failure.
7:00am - dog's face is swelling.  I jump in car and break land speed record to store for Benadryl.
7:07am - home with Benadryl, tuck one in a donut, give to dog.
7:08am - discover tick that husband "couldn't find".  Remove tick.  Happily light it ablaze.  I love the smell of...burnt tick in the morning...
7:47am - reheat coffee, put on Jack Johnson, and try to relax before the work day begins.
8:00am - realize that I will be late for work, because I've over-relaxed.

Jealous much?

Monday, August 2, 2010

Things I've Learned...

I've learned a few things in my summer job.  I feel obligated to share: 

  • Krazy Glue is not a substitute for stitches/staples.  Seriously.
  • Hot dogs should be chewed at least minimally.  Because what doesn't go all the way down...must come up.
  • Your leg is not to be used as a carpenter's workbench, ie. do not steady a branch across the leg and proceed to cut with chainsaw.
  • One should not attempt to exterminate groundhogs with a pistol.
  • Insecticide is not a drink.
  • Insecticide is not tanning oil.
  • Insecticide is not bug spray.
  • Put down the insecticide.  It's just too risky.
  • Your roof is not a high dive.  Even though I do recall a time when...
  • Sprinting into the side of a stopped car is not the answer.  Ever.
  • Yes, you can use propellant and a lighter to light your cigarette.  No, you shouldn't.  Just because it may have worked 99x, there's always that 100th.
  • It's okay to take a moment to tie your loose shoe string.  It is not okay to do so in the middle of the street.
  • In coordination with the aforementioned, it's not advised to lay down in the middle of the street and tell officers that you are resting.
  • Bats are not housepets, ie. you are discouraged from attempting to pet them.
  • Also discouraged is walking up to a random home at 11:47pm, opening the front door and yelling, "GOOD NIGHT!"  They may have 4 large breed dogs.  You may be slightly surprised by the outcome.  For the rest of you?  Lock your doors...

And something special for my friends with ms.  If you try the P90X that's all the rage, you may wish to consult your doctor.  Or at least consult ms first.  Two reps of the ab workout may cause intense hand tremors and, when you continue to push through, because you're stubborn?  Loss of hearing.  But just in one ear.  We've got 2 for a reason, right?  Right!  Time to go rest.  But not in the middle of the road...

This is yet another public service announcement.'re welcome.

Sunday, August 1, 2010

Great Facebook Stati...

A Facebook friend of mine posts the most thought-provoking stati.  Tonight's?

"What is your spiritual act of worship?"

Psht.  Easy!  (Yeeeeeaah, I had no idea what it meant at first.  Had to look it up.  I really do read that book called "The Bible", but man do I seem to miss a lot.)

Romans 12:1 Therefore, I urge you, brothers, in view of God's mercy, to offer your bodies as living sacrifices, holy and pleasing to God—this is your spiritual act of worship.

THIS body?  Tremors and spasms and black floaters and stiffness and relaxed bladder?  How about the faithful monthly migraines?  That's right, I just redefined "hot mess".  This body sure ain't what it used to be about 15-20yrs ago.  Back then, it could do so much more.  2-a-day sports practices?  You betcha!  Fit into stonewash jeans closer to my shoe size than my age?  Yep.  Even if I had to lay flat on the bed to button 'em.  I now refer to that phase as "denial".  I could barely breathe and was thankful that whatever GAP and Guess used to sew those buttons in was NASA grade.  But currently?  There are days that this body is, as we used to say back in high school, "toe up from the flo up".

But I read further into the "spiritual sacrifice" application and what that's all supposed to mean has nothing to do with physical bodies and their aptitude to turn a double play or squeeze into a pair of ill-fitting pants.  It means living life in such a way that brings glory to God.  Including my daily choices, the way I complete my work, the way I reach out to others, and my overall attitude.  Those common, everyday thoughts and actions are either worship of God or worship of self.


Well I'll be honest.  The actions are usually a whole lot more in check than the thoughts.  Though I can't say actions were totally in check last week, either.  I blew it on both accounts.    

I got to thinking how blessed I am that God saw something in me that could be spit shined and used for His glory.  The old way was very empty, even the parts I thought were joyful at the time.  I had developed attitude and ego.  I did it on my own, straight up, sans rocks.  As if to say, "nobody puts me in the corner, and I ain't your Baby"...

But I'm most thankful that each day is new.  Even when I fall flat on my face, sometimes literally, He raises me up to give me a new chance to bring Him glory.  I could absolutely not get through this without Him. 

I'll stand for Him.  And if standing isn't my strong suit at any given time, I know it's not a literal thing, kinda how my physical body...the one that gravity and lesions have been unkind to over the not what's required.  That really takes the pressure off.