Wednesday, September 29, 2010

Thankfully, This Is All Just Temporary...

I went to the gynecologist yesterday.  Sorry, men.  It's what we do. 

Well, let me be clear.  I went there to talk.  You see, I've been trying to understand what's behind the new and all too fun monthly migraines, which have morphed into monthly wake-up-from-sound-sleep-feeling-as-if-I'm-having-a-heart-attack episodes.  Let's follow the soul train of doctor visits...

I started with my neurologist over a year ago for the migraines.  She told me I was most likely entering pre-menopause (YAY!!!), thus the monthly occurrences.  She gave me a pill that made me feel as if I was Linda Blair, thrown around the room, up against ceiling, slammed to floor.  I traded up for a more mild and civilized pill that my primary care physician gave me.  That one just makes me feel like I'm on the magic carpet ride.  Not long ago, the heart attack thing started on a monthly basis, so I sought the advice local ER!  After countless tests, the cardiologist deemed me healthy.  The cardiologist then recommended I see my gynecologist.  So not the doctor I would've thought to see with episodes of tachycardia and left sided numbness, but who am I to argue?  Those who know me will so laugh at that.

Fast forward to gyn visit.  Let me begin by saying...neatest lady ever.  I see the Nurse Practitioner, because NP's are right up my alley.  They take the time to listen to me, thus making me feel like the copay was worth it, explain things thoroughly, and send me on my way a little smarter than I came in.  Anyway, she comes in and is all, "Tina, girl!  I haven't seen you in...let me see here (opens chart to check last note)...3 years!  How ya been!"  Love her.  So I explained how I wanted her opinion on this monthly migraine/heart attack combo.  We begin the "talk it out" phase and go back and forth...can't give you this pill, it's been known to make migraines worse.  Can't give you that pill, it can do this and that.  So we delve more into how the heart thing happens.  I wake up from a sound sleep, feeling as if I'm dying.  Got anything for that?  Hmmm...

CRNP: "could be panic attacks"
me:  "yeah I thought about that, but this is monthly."
CRNP: "do you snore?  Could be an apneic episode."
me: "nope."
CRNP:  "could it have anything to do with ms?"
MS:  "oh please.  Just stop it.  Not everything is my fault, alright?"
me: "eh, who knows"
CRNP: "I think you should have a sleep study done to rule out apnea.  Otherwise, since there's nothing I can really give you...."
me, with familiar smile: "I understand."

Story of my life. 

Slooooowly walked back to car, $50 lighter in the checkbook, no real solution to yet more health wonders.  It was pouring down rain.  I didn't care.  Well, until my eyes began to sting from the hairspray running into them.  Then I picked up the pace a little.

I sat in my car, dripping, and got all like...overwhelmed by sadness.  What!  Where'd that come from???  I'll tell you where.  I was sick of it, all of it.  Sick of being allergic and intolerant to medicines that help most other folks.  Sick of new health stuff.  Sick of not being able to see right out of this stupid left eye, and sick of wondering when my sight will be back to 100%.  Or if.  Sick of being  And why is it that every time I decide to sit down to create a blog post, my cat perches next to my chair and proceeds to stare at me without blinking?  That freaks me out.  She totally throws me off my groove as I'm trying to write.  Ugh.

Seriously?  What IS that!?!  For an this.  Unphased by camera.
But anyway, mind freak cats aside, the point of my post was to remind myself that ms, and migraines, and wacky heart symptoms, and every other affliction and sadness and hurt...are just temporary.  That came to me on my drive home, wipers on "holy crap" speed, eye playing tricks on me.  Also temporary?  Visits to the gynecologist.  But I digress.  As weird as that all may sound, because I even felt weird thinking it, is as comforting as it is to know.  

"When The Healing Comes" - Lisa Bevill
And when the healing comes
Whether here and now, or in the clouds
I’ll be loving you and my faith will stay
Right here and I’ll hold on
Can’t nobody move me
I’ll be first in line, when the healing comes

Sunday, September 26, 2010

Drawing Strength

The answer to the question, "how are you?" can be bullet pointed as follows: 

  • Alternating blurred vision in both eyes, though thankfully, not blurred at the same time.  Thus the "alternating". 
  • Nerve pain in lower right jaw, similar to a all 3 back teeth.
  • Nerve pain across left side of back of head, neck, and face.
  • Legs weighing in at 500 imaginary pounds.  Each. 
  • Tremor in left hand.  No biggie.
I ran through daily morning physical inventory, realized what the day would look like, and thumped myself back into bed.  After using the bathroom, of course...and banging into the door on the way back.  Make that "thing #6 on physical inventory list".  Inability to judge self in space.  Nice. 

I was supposed to be up at at 'em this morning, because I was to help prepare and cook a large meal for a local Christian camp.  It wasn't just any meal, this was their Booster Dinner.  And I was invited to work in the kitchen, despite playing a large part in creating The Meatloaf of 2009, aka the most horrific meat ever prepared and served to others, last summer.  It was so tragic that I exhausted myself just by mixing it.  A picture's worth 1,000 words...

So anyway.  There I was, laying in bed, staring at the ceiling, tears in blurry eyes.  And goodness gracious would you look at the size of that eye spot!!!  Oh wait...just a stink bug in my periphery.  Whew.  My body said, "you just stay right here in this bed.  If you try to get me up, I'm going to hurt worse than I do right now.  I'm already exhausted from one bathroom trip.  No way you're going to be able to help prep and cook for 180 people.  Pull the covers up and call it a day."

It then occurred to me that today was the MS City To Shore biking event.  As I was laying there, I thought of the thousands of people who were sacrificing their weekends to ride.  I thought of friends from high school who have teams.  My name is on their websites.  I considered how I may be one of the folks they think of on mile 85, when they're exhausted and wanting to quit...yet they keep going.  I thought of my friends who also have ms.  A guidance counselor, 2 EMTs, a nurse, an administrative assistant.  They don't let people down just because they're having a rough ms day.  The answer became quite simple.  Get...up.  Right now.  Yes, it will hurt. Yes, the scenery will be blurry.  Do it anyway. 

So I slid out of bed, literally.  I put on a pot of coffee and checked my emails.  In the array was a photograph of a woman who had written my name on her leg for the City To Shore.  I've never met her.  A friend of mine, also a friend of hers, shared my story...and she thought of me.  Wow.  Just wow.  


I sat here did I get so blessed?  People all over the world, ones I know and ones I don't, are thinking of and praying for me.  Just as I think of and pray for them, whether I know them personally or not.  God has a way of making the world very tiny, right?  I'm glad He did it that way, but most glad He made it temporary.  It's a pleasant reminder on "bad ms days", or "migraine days", or "chest pain days", or "negative bank account days", or "I'm sorry we're out of vanilla bean flavoring for your coolatta days".  You get the idea. 

Thank you, guys.  Seriously.  Thank you for your thoughts and prayers, because they help to give me strength.  Without that, I wouldn't have been able to fulfill an obligation...and in the process, create a new signature dish.  Extreme Salt Green Beans of 2010!  They weren't Meatloaf of 2009, but really, that should never repeat itself.  Think of the children...

Monday, September 20, 2010

All I Need:-)

It's Day7 of Eye Flare 2010...a frightful flare that seems as if it's wanting to get worse before it considers improving.  Have I called the neuro yet?  No.  Why?  'Cause I know what she'll say.  "I can give you a course of prednisone, which I will gladly do, but I also know how sick you got last time."  Yeah me too.  Allow me to introduce myself.  I'm the person who experienced all of the "rare side effects" so that they could be included in the drug pamphlet and commercial.  You're welcome.

I was determined not to let a little thing like Eye Flare 2010 stop me from enjoying my weekend, so I took my kids out to a town event.  I should explain this eyesight thing.  I have a hard time seeing colors and things like writing/font (ie. the bold font, all the better to see you with, my pretty).  Driving down the road is fine.  I don't need to read speed limit signs.  I don't pay attention to them anyway.

At the event, don't I run into a circa 1993 boyfriend?  How uncomfortable is that, right?  Especially when it's the one you complimented on being a great boyfriend, super sweet and kind, couldn't have treated you better...but you like this other guy.  And now that other guy is your husband, and has been for 16yrs.  I thought to myself...maybe he won't recognize me.  Maybe I can hide behind something, not.  Maybe I can pretend I'm sleeping?  Or maybe, if he does see me and we get to talking, I'll open with, "omg, previous boyfriend!  It's so good to see you after all these years!  Oh hey, about how you thought we might be together forever?  I have ms.  Aren't you glad that fell through! (insert emotional lability)  HA HA HA HA!" 

Well, he knew it was me.  And no, I didn't pretend I was asleep, or hide.  Actually, we had a very nice conversation, sharing different facets of what life has brought over the years.  The whole time I was talking, squinting at various signs at the event that were being pointed out, I felt like ms was saying, "what about me!  I'm something that's happened over the past 17yrs!"  But I didn't.  It just wasn't important, despite him sharing different physical ailments he's experienced.  I gave a courteous, "oh I hear sucks gettin' old!", to which he said, "you're younger than me!  You don't know about gettin' old!"  At that point, ms was screaming, "OMG!  Me me me!"  It does that, you know.  Screams things.  Ok, maybe that's another condition not yet dx'd.

When my husband came home that day from his 80th+ hour of work, I just kinda...stared at him.  He did that very slow "what did I do" walk as he made his way through the house.  I thought to myself how God really did give me everything I need to get through this crazy life.  My family, my friends...and this kind soul:-) 

He's seen a lot over the years.  A frightening moment of emotional lability that surely made him wonder when he married Linda Blair.  It was the night I lost my bread winning income as a self-employed medical biller - where I intermittently laughed hysterically/cried hysterically for about 30 straight minutes.  He sat on the sofa in fear, asking if he should call an ambulance.  My response?  Don't.  Can't afford it!  I then recalled how, in the early ms days, he carried an 80lb heavier me after I gave myself an errant shot of Avonex...hit an artery...and collapsed on the bathroom floor out of fear and sight of mucho blood-o.  He's also endured my bent wheels, tire scuffs, dents, and plowing of lawn tractor into car door with grace.  He's stopped getting so upset over my stumbles and falls.  Hasn't yet been able to laugh at them as I do, but maybe in time, right?  And he's stopped yelling at me about not getting to bed at a decent hour.  He understands that you can't shame insomnia away.  It just doesn't work like that.

I'm thankful that God worked it all out just as it was supposed to be.  I've got these 2 amazing kids, whom I couldn't possibly love more:-)  My family is incredible.  My friends are so supportive.  And my husband?  He's the right guy for this job.  Strong enough to pick me up off the floor, but sensible enough to keep back 500ft from the crazy lady.  And what do I contribute to the marriage?  Oh that's easy.  Come on, how much fun am I!?!  I'll bet not many husbands can say they've woken to find their wife...asleep on the toilet!  That's the stuff only the healthiest marriages are made of, right? 

Saturday, September 18, 2010

Some Things Should Just Be Off Limits

On Monday, I became overheated at work.  Not crazily so, but sweating nonetheless.  I was leading a "brain gym" program, dressed in professional garb, rather than ventilated exercise wear.  About halfway through, I noticed things looking a bit askew, so I did the eye test.  You know, close one...look through...good!  Close the other...look through...ding ding ding!  Blurry and loss of ability to see full color.  Left eye, why do you hate me so?  But I thought to myself, "it's okay.  When an eye symptom comes about from overheating myself, it goes away by morning."

No one has told my eye, nor ms, that it's morning alright...Saturday morning.  When I close my right eye and look at my computer screen, the page is nearly all white.  The font disappears.  It's as if there are thousands of tiny white holes in the colors I see through that eye.  Also, if I try to focus on something distant, it takes me awhile.  It's pretty blurry out yonder.  And my right eye?  Lots of black floaters.  That was new in this morning's inventory.  By all accounts, it's worse 5 days later.  And now something's going on with both.   

Am I scared?  Sure.  I'm always scared when my eyes are the target.  I've spent the entire morning wondering if my eyesight would get worse than it is right now.  And if it gets worse and more blurry, could I even drive?  I'm to take my kids out to pick apples, then to a car show, and to hockey tonight.  My thoughts then went long-term.  What if it goes away altogether?  Enter tears.  Lots and lots of tears.  Big ones. 

I haven't cried this hard over ms in a very long time, because I've not been this scared of it.  Vibrations and sensations and shocks and pains and leg weakness don't frighten me, nor do frequent bathroom trips.  Personally, I think eyesight should be off limits, but ms says otherwise. 

I really just couldn't get control of my emotions and my cry hit plaid.  I wanted to drown out my sniffling and the odd sounds I tend to make like, "mwhal!", because my kids were still sleeping, so I quickly put on some music.  I covered my face with my hands, nearly suffocating myself, you know, to try to muffle the sniffling.  And in my head, I started to pray for strength.  Obviously I was reduced to an emotional dishrag.  One that cannot see so well.  There's no worse kind of dishrag.  I then became a praying, emotional, sight impaired dishrag.  My prayer was something like, "Lord, I know You love me.  Please give me the strength to get through this, 'cause I can't without You."

A couple of songs later, once the music was audible over my sniffles and sounds, I heard the guy say, "He knows my name...He knows my every thought...He sees each tear that falls...and hears me when I call."  Oh wow.  And what song is this?  'Cause I never heard it before, and it's hitting the spot like a vanilla bean/coffee coolatta:-)  "He Knows My Name" - Geoff Moore. 

The What If Game is so damaging.  It can take an extraordinarily beautiful Saturday morning and turn it into one of fear and worry.  If I let it, ms will ruin this day with my kids.  Wait.  If I let it, ms will ruin every day.

Be well, my fellow ms'ers.  Don't let it ruin your day, and I promise not to let it ruin mine.  Deal?

He Knows My Name
I have a Maker
He formed my heart
Before even time began
My life was in His hands
I have a Father
He calls me His own
He’ll never leave me
No matter where I go
He knows my name
He knows my every thought
He sees each tear that falls
And hears me when I call

Thursday, September 16, 2010

Good Mom/Bad Mom

Feeling like a little bit of both tonight. 

I've mentioned my son's story of battling eosinophilic gastroenteritis and autism in much earlier posts, so I won't go there.  Suffice to say...he is a walking testimony of healing.  He is also the one and only thing (hate to call him a "thing") that brought me running to God.  There was something about staring into my 5 week old son's face, fearful that I was about to lose him to disease, that turned my whole world upside down.  For the first time in my then 27 years, I called out to God, begging Him to reveal Himself if He was, like...real.  And boy did He answer.

The only remnant of my son's personal struggle against both conditions, and praise God in the highest for it, is his diet.  He's not yet been able to pass a food challenge of items containing gluten or dairy, so he remains GFCF. 

I remember when we had to commit to this diet.  It meant much more labor for me, as far as having to cook all of these foods ahead of time.  Packing a lunch for my son isn't as easy as tossing a Lunchable in a bag or swinging by McDonalds.  It's baking the chicken, cooking the burger, frying the eggs in his vegetable spread, and creating recipes from varied ingredients.  Many a time I felt so tired that I thought I'd fall on top of the stove.  But it's not about me, or the fatigue that ms lavishes upon me.  There is no choice in the matter.  Either find the energy to make the boy's food, or he doesn't eat.  It's that simple.

Well, he and my husband just returned from a camping trip with school.  One of us must attend any trips on which food must accompany him, so that we can reheat the meals I've cooked the night prior.  He became saddened by the fact that all his foods are completely different from everyone else's.  The other kids were talking about it a little too much for his taste.  And so he got teary eyed.  My dear husband was informing me, because I'm so nurturing and compassionate.  Surely I'd make it all better.  Surely.

Keep in mind, when I summoned for my son to join me in the kitchen for a private moment, I had all intentions of being Good Mom.  I said to him, "Daddy said you had a hard time over the food thing on the trip?"  And he said, "yeah.  It gets hard when I can't eat what everyone else eats."

It touched my heart.  I wanted to hold him and do that Mom apology thing.  But as I looked into that perfect little incredibly sweet, God loving, amazingly tender child...I morphed into my father.  I said, "I know it stinks that you've had to eat like this for all these years, but at least you're eating food.  Do you know how many kids with EG go to school with feeding tubes every day?  I know it really stinks, but you have to realize how blessed you are, because there are tons of kids who would love to trade places with you."

My son looked almost ashamed, told me he was sorry, and retreated.  Ugh...face shot to Mom...

I meant to be soft and gentle, I really did.  But I know how far I get when I throw an internal pity party.  I begin to focus more on the illness than on what I'm doing through and with the illness.  I forget how blessed I am.  I become self-centered and depressed...and I begin to think even worse things.  I know I need to sit down again with him and just get really real.  I want to tell him that there are plenty of days I'm quite sick of ms.  I don't remember what it's like to feel completely healthy.  And sometimes?  I'm scared feces-less.  That'll come up on spell check, for sure.  What do you think it was about crap that someone said, "let's call it feces".  I really like "crap", though I've never understood why it was thrown against a fan to signify the end of the line.

Thoughts like these really bring me down.  About ms, not crap.  They don't help me enjoy my life any better, don't help me do a better job at work, and don't put a smile on my face.  I think it's totally fine to allow myself to feel...dare I say it...feelings.  But like PS Friend says, "everything in balance".  I want my son to see the blessings through the circumstances, to know that life isn't going to be easy, but that God's totally got it.  And to trust in that, fully.  When all else fails, even when his mother hugely disappoints him...I need him to know that God's got it.  Now I just have to find the right way to say all of that.

I should probably wait until tomorrow to articulate.  Still nursing what's most likely a mild concussion from falling into the wall last night on my 3rd bathroom trip.  How does one fall into a wall, you ask?  I dunno...should've asked me prior to falling into it:-)  I might not have a good answer 'til the cobwebs clear! 

Monday, September 13, 2010


Last night, insomnia came to visit.  Guess I finally went to sleep somewhere around 2am, waking at 2:37am with what felt like a bladder the size of a watermelon.  I stumbled to the bathroom and found that the contents of my bladder wouldn't have filled a Dixie cup.  Which is good, because come on, people use those for rinsing their mouths out after brushing.  Plus, I don't think they've ever been properly tested.  I stumbled back to bed, whacking my leg on something I've still not identified.  Whatever it was?  Was pointy.  I have a very defined bruise on my inner thigh.  That's attractive.  Matches the bruise on my left forearm.  Necklace and earring set?  Wrong girl.  I accessorize with matching bruises!

I then proceeded to wake again around 3:02am to pee another thimble, then again at 3:48am.  I was at least able to get rid of a respectable amount in that visit.  Ah yes, finally off to slumber, where I dreamt I was on the toilet.  I was woken from my dream by the sounds of Styx singing "Renegade".  I was in and out of the dream, wondering in my subconscious if I was back in college?  Because what college party DIDN'T play this song, as well as Brown Eyed Girl, Hotel California, and...wait.  I'm totally off track.  Anyway, I began to hum to Renegade, still in and out of the dream.  I woke up when the music stopped, sort of like a game of Hot Potato.  I heard footsteps coming closer...closer...and...darn if I wasn't really on the toilet.  My poor husband.  All he wanted to do was wake up for work, walk past the bathroom, and not see his lovely wife...asleep on the toilet.  Isn't that what every man wants? 

And THAT, my dear rock bottom.

Like Styx says, "The jig is up, the news is out - They finally found me"  :::asleep on the toilet:::

And if you loved that song like I always did...

Sunday, September 12, 2010

MS Is A Bed Of Roses

Today, I was asked about ms.  To be exact, it went a little something like this. 

Person:  "So you have ms?"
Me:  "I do."
Person:  "what's it like?"
Me:  "'s a bed of roses."

Super long stem.  Extra thorns.  I mean that literally, not as some cheesy literary reference, or worse yet, shameless Bon Jovi reflection.  I feel like they're stuck in my face, back, foot, etc.  Sure, the first 5 years or so of that drove me crazy.  But now?  Pssht.  It's old hat.

Let's go deeper to uncover more, shall we? 

MS is the child tugging at my shirt saying, "mom? mom? mom?" until I snap and create a scene.  Rather than tugging at my shirt, it tugs on my bladder.  The 7th trip to the restroom in the same hour can result in me publicly yelling out, "REALLY???"  I've missed the better parts of school field trips, sporting events, family visits, church services, Bible studies, ladies' retreats, and conferences...because of the countless trips to the bathroom.  I am, however, very well versed in public restrooms.  If this job thing doesn't work out?  I could be a fierce restroom critic. 

MS is like that Price Is Right shell game, hiding my words, swirling them around, and revealing them in a random order.  SURPRISE!  And sometimes it even hides tangible objects.  Car keys.  Deodorant.  My left shoe.  Okay, wear different shoes.  Can't find the match to that one either.  Screw it.  Sneakers.  Change pants to shorts.  Change dressy top to t-shirt.  Done!  Where were those keys?  In my hand.  Where's my pink Phillies hat?  On my head.  Ugh.

MS is the tin foil you chew in your back teeth.  Random shocks in my face and nose.  So like, as I'm trying to carry on a highly intelligent conversation with a doctor on behalf of my grandmother?  I'm getting a shock to the cheek.  I feel the "bzzt" and touch at my face...(bzzt)...touch at face...(bzzzzzt)...touch.(bzt)at.(bzzzzzzzzzzzt!)FACE....temper temper...(bzzzzzzzzzzzzzzt to side of nose) SMACK AT FACE!  I'm left to wonder if slapping the bejeezes out of myself in the midst of a serious conversation somehow diminishes my street cred? 

MS is the 100lb dog laying on me when I'm trying to wake up in the morning.  Getting out of bed is never simple.  I've often wished for a Wondertwin Power like..."form of...LIQUID!", because then I could ooze out of bed.  Feels like I ooze out of bed anyway.  I've not felt up to exercising in awhile.  Why?  Sadness.  Why?  I don't get to see Pretty/Stylish Friend.  Collective "awwww".  We now work about an hour away from one another and have conflicting evening schedules, so our daily lunches, walks, and monthly cheesecake nights are no more.  And yes, I'm 38 and sad over it.  In the meantime, I've become gelatinous.  Sad and gelatinous.  Despite the visual, it's really not an attractive feature.  PS Friend has always advised that one should look in the mirror every morning and say to oneself, "I make this look good".  Hmm.  Full set of eye luggage from insomnia and Jello jeans?  I'm rockin' that look, and RuPaul would be proud!

Currently, ms is the catalyst behind the nerve pain I have across my shoulders, back, and spare tire.  Makes sitting in this chair a very noticeable experience.  Lean forward...leeeeean forward...ouch...

"That's what ms is to me."  :::blank stare from Inquiring Mind:::

Were they not ready for that jelly?  Like Beyonce says, "By the looks I got you shook up and scared of me...hook up your seatbelt, it's time for takeoff...I don't think you're ready for this jelly."  I think how much fun I missed by this song coming out some 20 years after my club days.

In all honesty, as much as I've joked about these presentations of ms is as much as I'm seeing the blessings through it.  These symptoms are nothing more than annoyances.  Even on the really bad days, they're just major annoyances.  It keeps me humble and fully reliant on God.  It doesn't stop me from working, at least not most of the time.  Migraines and the recent heart symptoms - sure, but ms is fairly innocent in that regard.  It doesn't change the mother or wife that I am, nor the friend that I am.  And I know what a true blessing it is to be able to say that.  I'm not sure I'll always be able to say it doesn't keep me from working and living life as I do today?  But I'll cross that bridge if I reach it.  What I do know is...God will have built that bridge.  And He'll give it ample weight limit.  You know, for the jelly and all.  (now that's just funny!)

Friday, September 10, 2010

Comparing Apples to Lesions

It's 7pm on a beautiful Friday night.  The view outside my picture window is amazing.  Colorful trees against a gray/blue cloudy sky.  There's so much to appreciate.  But I'm ready for bed.  When did this happen?  By "this", I mean...when did I stop being cool?  I've got to get to the bottom of this.

Tonight in 1989 would've looked a lot like this:
  • Rush home from sports practice, assure Mom schoolwork was in check, begin to call friends to organize night out.  On a landline.  'Cause none of us had cell phones. 
  • Pick up friends, go to dinner at Coco's, order ginormous virgin strawberry daiquiri (come on, I was 17), eat tortilla chips and salsa, no meal.  I worked at Bavarian Pretzel making $3.65/hr.  A meal wasn't in the cards.  But I knew what was most important.  Daiquiri and tortilla chips!
  • What came next would either be:  Dancing, pool shooting, and/or driving around town acting the fool.  Whatever I could fit in up until 11pm, because that's when Vietnam Vet Sgt. Dad said to be in.  And I quote, "there is nothing you can do at 11pm that you can't do at 6pm.  Oh silly Dad!  That was so not true!  Which is exactly why my kids will be in at 10pm:-)

Tonight in 1990-1993 cannot be discussed.  I was in college.  'Nuff said...

Tonight, present day, is as follows:
  • Drag in from work, throw briefcase on table, refresh with glass of water.
  • Strategically place empty glass so as to remain in the nightly game of Dish Jenga.  
  • Watch husband carelessly approach sink with his glass.  Smile upon hearing random dish hit floor...husband loses AGAIN!  Loser loads the dirty dishes in the dishwasher.  I just hate that job.
  • Decide whether or not 3 bath towels in the closet are enough to get us through until tomorrow, or if laundry tonight is required.
  • Consider pros and cons of going until morning without eating.  I don't feel like heating up a leftover.
  • Let the dogs out, in, out, and in.  How can 4 dogs be on 4 different bladder schedules?  I mean, shouldn't at least 2 of them match up?
  • Listen to husband cough incessantly.
  • Yell at husband for coughing incessantly, demand he take double the dosage of Mucinex.
  • Husband goes to bed in frustration, because I'm complaining about his coughing and am completely insensitive to his illness, which he wants sympathy for.  I cannot muster it, because it is a cold.

Of course I'd prefer to blame ms for this drastic change in my social life, because I don't want to believe I'm aging.  It then becomes the dx of convenience.  But comparing 1989 to 2010 is like apples to lesions.  Worlds apart.  While I miss the fun and excitement of yesteryear, I'm quite content here in my quaint little life.  I'm nearly undefeated in Dish Jenga.  No one can stretch a load of whites like I can.  And hey, there's a little food left in the fridge for the family.  Not too shabby!  Besides, I don't think I'd want to be a 38 yr old out driving around, acting the fool.  Or spend an hour trying to stuff myself into a red leather skirt to go out dancing.  Or chompin' on tortilla chips and drinking virgin frozen daiquiris in glasses the size of small fountains.  Wait...

Just Fine

I have to come clean and say that I began a post where I was complaining, listing every current symptom, throwing a slammin' pity party for myself over the fact that I have a UTI, which has exacerbated ms.  I was the life of said pity party.  I imagined myself donning a cone hat, blowing into one of those stupid things that make noise and come flying out at people.  I'd write "sucks" on it, with "MS" at the top.  So it would say "MS", and when you blow into it, "sucks" would be revealed.  Because it does.   

So I was angry typing when I heard one of my favorite songs playing.  Mary J. Blige - "Just Fine".  I recalled the video, where she's got the fiery electric all around her legs, arms, and hands?  Uh huh!  That's some of what I feel!  Yet despite limbs o' fire, she's "Just Fine".  See?

I got to I not just fine?  Yeah, I've got lots and lots of symptoms right now.  I could create a list of the Top 5 Most Sucktastic Symptoms Du Jour.  But the more I focus on that list, the more I feel every last one.  Like the 7 alarm fire in my body.  Yet my temperature is barely 97 degrees.  I considered slathering up with Gold Bond, but it's not that easy.  My neurological system is in the middle of throwing a huge fit.  It demands to know who UTI thinks it is, because the CNS says, "I'm MS, fool!  You come up in here with your urinary frequency and retention?  Pssht!  I'll kick this party up a notch with some limb fire, tremors, electric shocks to the skin, and eye stuff!  Say my name!"

But back to Mary J. being Just Fine.  Could this song not be a mantra of sorts for those of us living with chronic disease?  

No time for moping around, are you kidding?
And no time for negative vibes, cause I’m winning
Gonna live my life, feels so good to get it right
I aint gonna let you {MS} kill it
You see I wouldn’t change my life, my life’s just…..
Fine, fine, fine, fine, fine, fine, ooooh
I think what I need to do is the very same dance that MJB does in her video, because there's such a transformation from limbs o' fire to excellence.  And I want that.  The natural progression is...fiery limbs change to - double vision, which changes to - multiple personality disorder (that's like emotional lability!), which changes to - double vision again, which changes to - doves now amazingly shooting out of her hands, symbolizing the Holy Spirit, which changes to - a Chaka Khan high note, because there's no better singer than Chaka, which changes to - MJB totally bustin' a move, owning the moment!  That's where I wanna be!  Bustin' a move, not letting this flare get me down!  Must be careful, however.  I don't want to end up on the floor, unable to move.  Calling out from work is not an option.  "Yeah, I can't come in today?  Um.  I was dancing.  Mmm hmm.  Yeah, it turns out I'm not the 19 yr old in the club anymore.  No no, don't worry...I'm just fine:-)  {fine, fine, fine, fine, fine, oooooh!} 

Monday, September 6, 2010

MS Simulation Products

There are products that simulate pregnancy, like the weighted vest.  With breasts.  Attractive, don't you think?  Personally, I think they skimped on the breasts.  Just sayin'.

Do you think he sat in the corner for 2hrs, crying and spewing into a bucket? And when she came home from work and found him in that state, do you think she dared to ask what was the matter?  And do you think he said, "do you still find me attractive?  Do you still love me?  I mean, HOW could you love me like thissssssbllllllllaaaaaaaaaaaaargh"?  Maybe that was just my pregnancy.

I'd like to create my own brand of MS Simulation products.  These would be me-specific, because I could never pretend to speak for the majority of my ms brethren.  But here's what I'd like to develop:

Wobbly Walker 2010
This year's model is smartly equipped with a rubber stopper to add that authentic tripping feature as you wobble about.  Works best descending stairs.  The accompanying pom pom...just because.

L'Hermittes Sign/Paresthesia Simulator
28 additional leads are included in the packaging of the L'Hermittes/Paresthesia 2010.  Place on face, leg, hand, until every last one is applied.  Turn dial to 8 for the "real feel" dynamic.  For greater enjoyment, have a partner turn the dial from 0 to 20 intermittently...and attempt to carry on a conversation without letting on that something is happening.  But for the love of God, leave the cat alone.

MS Hug Simulator
An essential part of the MS Sensitivity Package, the MS Hug Simulator boasts a 60psi rating.  Sleek new design easily hides under clothing so as to give the illusion that...nothing is wrong.  As you rub your hands across your ribs and sides, passers by will stare.  You're welcome.

Vibration Simulator
This realistic vibrating belt can and should be applied to the waist, the thigh, the upper arm, or the foot.  Or other places.  Whichever.  For best results, put on prior to bed and...try to sleep.  Don't bother seeking the setting dial.  It's either off or HIGH.

Picker Socks
Picker socks are the "must have" for those movers and shakers, especially those who enjoy walking for exercise.  Put on a pair of picker socks, tie your shoes tightly, and experience what it feels like to exercise with MS.  If walking with a friend, you are encouraged to again, attempt to carry a conversation, pretending as if everything is fine.

Floater Goggles

Floater Goggles are lightweight and sporty for 2010.  Pictured above is a beautiful daytime sky.  Floater goggles will challenge you to find the beauty through the moving black spots.  In the words of Tony can doooooooooo it! 

Emotional Lability Carousel
The Emotional Lability Carousel requires user input.  Each time your horse moves upward, you are to laugh.  Each time it moves downward, you are to cry.  Laugh...cry...laugh...cry.  Also to properly experience EL, you are encouraged to laugh at a friend delivering bad news, laugh at illness, and laugh at a funeral. 

Numbing Tourniquet
Sold in pairs.  A fantastic accessory to Picker Socks when exercising.  The Numbing Tourniquets provide a realistic feeling, or loss thereof, of sensation in the legs and feet.  Don't worry, you've been walking with your feet and legs for many shouldn't be a problem at all to concentrate through it.

Faux Weight Simulator
The Faux Weight Simulator adds that 30-40lbs of pressure that one with MS may feel as he or she attempts to get out of bed, to stand from a chair, or to move about during the workday. 

And last but not least, this one's for us................

The Toilet of The Working MS'er

Oh trust me...if I could, I would.

What do you think!?!  Should I get an investor?  Or two?

Sunday, September 5, 2010

MS and Marriage...Or At Least Mine

I often wondered what it was like to be married to me.  I mean, I see the outward presentation and all, but I decided to "interview" my husband.  Keep in mind, he thinks I'm innocently sitting over here...blogging.  But no no, I'm recording his every word.

Me:  Honey, what's it like to be married to me?
Honey:  (long, odd stare...)  A dream come true.  (after further thought)  What's it like to be married to you...I don't know!  (blows nose, he has an upper respiratory infection, which I've not been sympathetic of.  'Cause I have ms.  And a UTI.  Everyone knows UTI is the straight flush and ms is the royal flush.  He's got a pair of kings at best.)
Me:  What I mean is, what's it like to be married to me with ms and all?
Honey:  (laughs)  I DON'T KNOW!  What are you typing?


I'd like to think that being married to me is like a fairy tale for my husband.  That's how he used to make me feel when we were dating.  "I loved you as soon as I saw you" is what he told me many times.  Personally, I think it was the catholic school uniform he loved, but he won't admit it.   

What's the reality, though?  Being married to me could best be re-enacted by tossing a red sock into a front end washer full of whites.  It slowly sloshes a bit to one side, then to the other as the water comes in.  You feel a sense of peace as you watch it through the door.  Oh what a nice little red sock, see how it carelessly moves about.  Then you see the soap and bleach come sliding down the inner part of the door and realize...uh oh.  That stuff's going to suck the color right out of that poor little red sock!  The whites will absorb every ounce of the what the red sock once was!  But the door is locked and you can't save it now.  You can only watch in horror as the cycle enters "drain and spin", the washer barrel spins at 150mph, and the red/pink/white sock has been fully overcome.  I often my husband the red sock?  I think he just might be.

I wasn't always like this.  "This" has morphed over the years from the overactive, work-a-holic, fun-loving, life-of-the-party, movin' and shakin' the God loving, family tending, ms battling, hard working woman.  I put "ms battling" ahead of "hard working", because ms has to be wrestled with just to get on with my work.  But it's okay, because it keeps me grounded.  It's my constant reminder that I'm fully and completely reliant upon God.  I consider it my thorn, like in 2 Cornithians 12:7-10.  Without it, I might get to thinking too highly of my own abilities, might get a little cocky, might stop appreciating things with the same intensity.  That's right where I was at about 12-20yrs ago, and if I hadn't changed drastically?  I hate to think what life would be like.  I suppose I should take this moment to thank ms, but I won't.  Instead, I will praise the Lord:-)

Since my husband won't answer, I'll do my best to summarize...

Being married to me means never knowing what any given day will look like.  I may come in from work and collapse into bed, not resurfacing until it's time to pee...or until the next morning.  It means never having a hot meal cooked the same night, because I cook everything on the weekend...when I have the most energy...and store it in the fridge as leftovers.  It means never cleaning the house from top to bottom, because my energy is spent on work.  It means facing emotional lability straight on with nowhere to run.  It means that, if I have to carry laundry baskets around, you might get yelled at.  It means that, if you try to carry a laundry basket for me, you might get yelled at...because I GOT IT!  But he keeps coming home.  He keeps kissing me "hello", "good morning", "good bye", and "good night"...sometimes twice.  He cares for me in the ways he knows how.  And he works. Very. Hard.  Recently, he had the chance to work a little less hard, but it involved a big decision...and that big decision centered around me.  For the first time ever, when I asked for his advice, he didn't say "I don't know".  Instead, he said he knew where my heart was, and that I should follow it.  He said God will provide, and that he still has plenty in the tank to keep working in his 2 part-time jobs...on top of his full-time job. 

We're fast approaching our 16th wedding anniversary. That makes about 17.5yrs together, and 22yrs of knowing one another. Yeah, we've had our unfair share of drama years ago, but we've come through it stronger.  And at some point, we'd like to renew our vows.  I've asked him if he wanted to take out the part that goes, "in sickness and in health".  He said, "only if you want to take out 'for richer or for poorer'."  Nah.  I'll keep him, for richer or poorer.  'Cause he keeps sickness.

Happy Anniversary, Honey!  Love you so much:-)

Saturday, September 4, 2010


Okay, seriously?  Let me be very real and say...I've been having a pretty rough time of things for a few months now.  Emotional stuff, everyday life stuff, a pretty consistent pile of...stuff.  Stress and ms go together like Aqua Net and open flame, like a grease fire and water, like Coke and Sweet N Low.   

The summer?  Can best be summed up by the following:  Revolving ball of stress, very long and hard work, constant roller coaster ride in family employment and finances, as well as personal and family health matters, including my grandmother's tenacious battle for her life.  The conversations that she and I have had throughout this battle are discussions no one should have to have with a loved one, especially their grandmother whom they grew up so very close with.  Or maybe that's exactly why those conversations happened, because of that closeness.  If we weren't so similar, if we didn't "get" each other like we always have, we couldn't have them.  Eh, so maybe I'll take that back.

I ran to the grocery store for a couple of things and, upon entering the lobby, heard the familiar sound of clicking.  A child was acquiring one of those .25 cent toys from the little red box on pedestal.  I stopped in my tracks to stare at it.  Couldn't tell you what was in it, because all I saw was 1975.  I remember Mom letting me catch the change that came sliding down the tray at the cash register.  I first had to count it aloud (ya know, to develop my mad math skillz), then could go get a little football helmet, or a gumball, or a jawbreaker.  Just then, my utopian daydream was interrupted by an aggravated voice stating, "EX-CA-USE ME...damn!"  In her defense, she very well may have excused herself 5x or more.  I was so engrossed that I wouldn't have noticed.

I took a wrong turn as I exited the parking lot.  Keep in mind, I've lived in this town for over 30 years, yet I make wrong turns in times such as these.  The same kinds of wrong turns...always back toward the home I grew up in.  I indulged myself and decided to drive to it.

As I continued on those familiar streets, names of which I still can't fully list (because I just knew how to get everywhere I needed to go) I was hit with memories of riding our bikes around town, walking to school through neighborhood yards, playing kick the can, stickball, and frisbee football.  I arrived at my old house and drove by slowly.  I instantly recalled Mom and I laying on the floor, on our bellies, coloring opposing pages.  She never made me adhere to a color scheme.  I could make green people if I wanted, purple grass, etc.  I couldn't color in the lines if you paid me.  Mom was patient, always trying to show me how to darken the borders, color in all one direction...but try as I may, I just couldn't.  In fact, you would've thought I colored it with my feet.      

I then envisioned sitting at the kitchen table with Mom and Dad, coloring Shrinky Dinks with those tiny pencils, then watching them bake through the window of the avocado green oven door.  Flash to baking with the Easy Bake, making a colossal mess...and the oven going "missing".  I now know what happened to it all these years later, Mom.  Fool me once...

Retro'ing always makes me smile, but this time?  I felt my eyes welling up with tears.  Sometimes, I want to be that kid again.  I want my biggest worries to be "did Mom pack tuna fish or lebanon bologna today?"  I want the worst thing to hear in a doctor's office to be, "looks like she's got tonsillitis again".  I want to walk out of my elementary school and hear my grandmother call my name as she awaits me in her rumbling Corvette. 

As I was in full out sobbing cry, barely able to see the road, I was reminded that God has not left my side.  It's not like I'm enduring these really hard things on my own.  He's got it all under control, even when I'm spinning.  And that it's a blessing to have so many wonderful memories to be psychotically thrown back to when the stress level reaches "Plaid". 

My thoughts turned to my kids...the absolute loves of my life.  My loving husband, whom I'll soon be celebrating an anniversary with.  My Dad, my hero.  My Mom, the greatest friend I'll ever, ever, ever have.  And my Mommom:-)  Because she's just that funny, even in the midst of what all's going on.  Finally, I remembered...I had that 2 for $5 Breyers ice cream in the car. 

Crap.  Anyone for milkshakes? 

Friday, September 3, 2010

MS Is The Embarrassing Relative

Embarrassing relatives.  We all have them, right?  In my family, that's me.  Because seriously, as I sit here running through each 1st, 2nd, such-and-such removed cousin, aunt, and uncle on my Mom's side...then Dad's side...I can't think of anyone who embarrasses me.  So since every family has one, it must be me.  That leaves ms to be my token embarrassing relative. 

What would be the most embarrassing thing to you if you were...oh I dunno...38 years old, confident, hard working, professionally respected, outgoing, friendly, and other self-proclaimed, positive adjectives of choice?  Would it maybe involve a bladder?  And its contents?  Yep, that's at the top of my list.

Allow me tell you about my bladder, because I think it's time to really get to know me.  The real me.  Can we honestly say we know someone...I mean really know someone...if we know not the bladder of that person?  The truth is, we cannot.  And since this post is just going to be between you and I, and any random internet surfer who googles "bladder" and "embarrassing", which is scary in and of itself, I feel as if I can share.  No.  I feel as if I must. 

I've come to realize that my bladder does not have the Word of God.  Yes, that's a bold claim, but I'm not afraid to say it.  The fruits of the Spirit are love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control.  My bladder stopped loving me about a year ago.  It is not joyful nor peaceful, kind nor good.  It is faithful in the fact that it gets all dramatic-like when it's an absolute worst moment for me to be stuck in a stall.  Ya know, like at the Joyce Meyer conference?  Yeah.  I spent about 20mins in just one trip, then had to go over and over again.  Or how about when I was invited to accompany my grandmother in the ambulance during an emergency transport to the city hospital?  "Do we have 2 seconds?  I can't hold it."  Sorry, Mommom.  You know you're close to rock bottom when an entire ambulance crew is waiting outside for you.  My bladder is not gentle, but rather brazen.  And self-control?  Okay, so I had an instance where that wasn't in check.  Thus the title of the post.  "Embarrassing" doesn't quite capture it.  Whatever "embarrassing" is x10 is where I was at not long ago.

My own mother threatened me.  We were to go to the hospital to visit my grandmother and I had to use the bathroom before we left, but nothing was working.  After about 25mins, she yelled, "you got 5mins and then I'm puttin' a diaper on you!"  To which I said, "thanks a lot, Mom!  Make fun of the girl with ms!  Nice!"  To which she said, "shut up and pee already!  We're going to hit traffic!"  My grandmother understands me, thankfully.  Though she suggested I get a Foley catheter because, and I quote, "these things are fabulous!"  Ugh...

Also embarrassing?  Busting out in uncontrollable laughter at inappropriate times.  That happened just today, as a matter of fact.  Serious work meeting, someone said something that should not have been laughed at, and I scream laughed, complete with tears streaming down my face.  I would have excused myself from the meeting to get my laughter out in a more discreet location, but when I laugh that hard?  My bladder says, "move and I let go!"  It's got a hair trigger attitude.  So I did what any professional would do.  Sat there, laughing hysterically, crossing legs with 8 ton force, praying to God that I wouldn't laugh AND pee.  What a staff meeting that would be! 

Also embarrassing?  Dropping my bottle of water (thank you, spontaneous hand tremor), nearly falling while trying to pick it up from the floor, then accidentally kicking it with my foot.  And people see the whole thing.  I should be wrapped in Charmin.

Yet another example?  Walking from the kitchen to my computer desk, banging into everything in my path, making one heckuva noise, causing my son to break into hysterical laughter.  I asked what was so funny, ya know, once I got myself safely seated and all?  "I mean, how many things can you bump into, Mommy?  Ha ha ha!"

Embarrassing.  Inconvenient.  Energy sucking, vision tricking, memory fogging, word stealing, moderately  That's how I could look at it.  And yes, it's all those things and more.  But it's also kind of humorous, certain times more than others.  There are two trains of thought here.  I can choose to be the pigeon or the statue.  Though I feel a whole lot like the statue many days, I will soar like the pigeon.  And I'll do my best to laugh at the orange tag on my leg that bears the initials "ms".