Friday, December 31, 2010

A Class Re-Reunion

See, I attended 3 different schools.  The reunion I went to a short while ago was for the school I attended from K-8th.  This one was for my graduating class.  They've already celebrated the formal reunion, which I missed out on.  But!  They set up a re-reunion.  I was all about it:-)

I mean it when I say I completely adored my 11th/12th grade years.  I attended a small private school where there really wasn't much of the traditional, clique-ish atmosphere.  It was a family of sorts.  Dysfunctional?  Sure, at times.  But a family nonetheless.  They needed a shortstop for the team and I needed a change in surroundings.  I had no idea the depth of the lifelong relationships I'd form as a result.  All I gotta say is...praise God they needed a shortstop.

If I were to sum up my class in a few words?  I'd go with "insane", "silly", and "covertly intelligent".  Covertly intelligent in that our teachers knew we were smart, but no one else would've guessed it.  Okay, that was probably just me.  I shouldn't throw my friends into the path of that bus.  There was very little we took seriously, with the exception of our athletic teams.  We were larger than life and living it in fast forward fashion.  I still recall how us girls would have sleepovers where we'd often spend as much time chatting with our friend's parents as we would with one another.  Again, like a family...

Most of us held jobs at the local mall.  Some of us were fortunate enough to work across the hallway from one another.  After closing time, or during a snowstorm that left the mall quite empty, us girls rolled thawed pretzel dough from our employ at Bavarian Pretzel and threw it across the hall at our classmate boys working at Kinney Shoes.  The boys at Kinney Shoes would blare the store radio so that we could sing and dance in our respective stores.  We made about $3.65/hr.  It was to be expected.

Facebook reunited us after too many years apart.  In the random stati that have been posted, we've learned that we continue to have things in common...even as grown up spouses, parents, and now mature, responsible employees.

We rescue animals, we have similar home lives, and some of us even have ms.  My friend, Brian, who was one of the Kinney Shoes boys and the epitome of silliness, happens to be the President of Team Inspire.  That's a team of people who ride an insane number of miles on behalf of folks like me...and his dear wife...who have ms.  I wish that his wife and I didn't have so much in common. 

This year, Team Inspire was honored by the Nat'l MS Society for being a top fundraiser.  They've raised hundreds of thousands of dollars to fight ms.  And I'm blessed to be one of the people they take into account when they're riding...and riding...and riding. 

My classmates and I are still very much a family:-)  They offered to park my car for me.  They met me on the sidewalk and walked with me to the establishment.  Every door was held on my behalf.  Those seated at the end of the table all stood up for me when I entered so that I had a choice of way too many seats.  They offered to walk with me to the restroom.  At the end of the night, I was delivered to my car, reverse valet style.  I was truly humbled by their thoughtfulness and careful consideration...invisible symptoms or not. 

This is Brian, delivering a classic photobomb on me.  This is me, cracking up over it.  Any questions... 

This used to be the girl gunning pretzel dough...and the boy across the mall hallway, dancing to blaring music. 

My apologies, ms.  You're not on our level.  I mean...just look at us!  MS hasn't stolen our smiles, nor our joy, nor our relationships.  It can't steal our faith, nor our determination, nor our will.  That goes for each and every one of us, everywhere.  We > ms.

I am thankful to have the loving thoughts, prayers, and consideration from my high school family-esque friends.  Thank you, graduating Class of 1990.  I am truly blessed by your friendship:-)

Sunday, December 26, 2010

Going To The Grocery Store - Before Snowstorm

They're calling for a major snowstorm and what did I need to do this morning?  Yep.  Go to the grocery store.  Excellent.

I arrived to a parking lot scene that looked a lot like Black Friday mall parking.  Are you kidding me?  And why is it I haven't gotten a handicap placard yet for "lead leg" days like this?  Stupid.

As I crept through the lot, I saw reverse lights!  Beautiful!  Flicked my signal on and waited patiently.  The person was backing out and what's that I saw?  Little green Honda lady whipped around the corner, looked straight at me and my blinking signal, and took the space.  Oh temper temper.  It was alright, because another car backed out just 2 spaces from the front.  I took a moment to give a little celebratory cabbage patch dance in the driver's seat as I rejoiced in sweet justice.  How ya like me now, little green Honda lady?  Sorry, Lord...someday I will mature.  Hopefully.

I walked into the store and it was sheer pandemonium.  Thankfully, I just needed a few things...things that I felt I had to explain to those standing much too close to me in the applicable aisles.  I'd say things like, "I was seriously out of eggs, I'm not just here 'cause of the storm" and "I really just need this bread, because my husband plows and he needs to take a bunch of sandwiches along with him" and further disclaimer-like dialogue.  But because everyone was so busy elbowing one another for the last pancake syrup, hip checking one another for the last Entenmann's cake, and pie facing one another for the last gallon of milk...they paid me no mind.

Forget about trying to find a moving line at the registers, so I went to the self checkout.  Because my fine motor capabilities aren't quite with me right now, I dropped my shopping card on the floor.  Bent down to pick it up, attempted to put it back in my purse, and knocked it off the counter.  It was unzipped, so everything fell out.  I was kneeling down, trying to pick up all of my coins and cough drops and chapstick and such off the floor...tried to stand up too quickly and nearly face planted when I was tripped up from my old friend, Vertigo.  She's a feisty one, that Vertigo!  By that point, the line behind me was building...and shifting impatiently from left to right (unless it just looked like that on account of Vertigo and all), and people were giving me an extra helping of "stink eye".  Again...invisible symptoms = misunderstanding.

I finally got myself situated, successfully fished my cash through the machine, made it to the know, the one MUCH closer to the store than little green Honda...and eventually entered the solace of my driveway.  Right on cue, my front door opened and the most handsome little guy, dressed in pajamas, his Daddy's sneakers on his feet, appeared:-)  Just as he has for about 6 years now...he bopped down the front walk, opened my driver's door, extended his hand and said, with a smile, "hi Mommy!  I got the bags!"

He's pretty awesome, right?  Yeah.  I think so too.  He'll make a wonderful husband someday, though I don't see the future wife agreeing with his carefully thought out plan of building a room onto his house and moving me in.  I'll be cool with her and long as she doesn't take my parking space.

Tuesday, December 21, 2010

Wifely Guilt = Baked Goods

I'll be honest...I go through moments of feeling like a crappy wife.  Can I get an amen? 

I'm well aware of what I'm not.  Like...I'm not a whirlwind around the house.  I've shared before how I cook a bunch of meals on Sunday evenings, when I seem to have the greatest amount of energy, and reheat them throughout the week.  I don't load the dishwasher unless I lose the game of Dish Jenga we seem to play around here, and that doesn't happen often.  I'm not prompted to do laundry until we're down to the last towel, the last pair of dress pants, the last pair of undergarments.  I'm just trying to get through my work week, you know?  I don't pay attention to things like...baking.

So my husband and I were having a nice little conversation when he casually mentioned to me that a woman he knows told him how she found these tiny Reese's peanut butter cups at the store.  She was going to make chocolate chip cookies and experiment by putting the tiny RPBCs in the cookies.  Hold on.  I know she didn't just talk RPBCs with my man!  (lol!)  Anyway, continuing on.  She said she was going to make them this weekend and would give some to him.  My reply?

"Aw!  That's really sweet of her!  Tiny RPBCs, eh?  Creative." 

Oh hello, Guilt!  Haven't seen you in a little while, how ya been?  Nice of you to stop by over something so trivial as...cookies.  I'm sorry, Guilt.  But as Rose Royce's song said when I was little, love don't live here anymore for you.  You'll have to move on.  I won't jump through your hoops, especially not over cookies.  Life is simply too short.

But then I did what I do.  I went to the store in search of tiny RPBCs.  Spotted the "Baking Needs" aisle...yep, that must be the spot.  Think again.  Wait..."Candy"!  Surely that's the correct aisle?  Nope.  You've got to be kidding me.  Just regular RPBC, not these fairy tale tiny ones.  I began to doubt the existence of such a delicacy.  I did find the bite sized RPBCs, but those were much too large to place in the sort of chocolate chip cookie I was picturing.  Again, I did what I do.  I got frustrated and threw the bag of bite sized RPBCs at the shelf in annoyance, but I missed and it hit the floor face down.  As I picked it up, I noticed a recipe on the back.  Bite sized RPBC in a...cookie?  Could this be the one time my temper gets me what I want? 

I don't know, but judging by the picture immediately below?  I'd say I just BROUGHT IT, baby!

THAT just happened!  So what if I didn't read the directions properly.  No matter that I didn't fill the little cups with quite enough cookie dough, resulting in the RPBC sticking up and out of it, rather than being properly flush with the top.  I don't care, because it wouldn't be something I baked if there wasn't something slightly askew with the finished product!  And what my husband likes most:-) 

Healthy wives, you can keep your fresh cooked meals, perfectly baked desserts, neatly stacked dresser drawers, and empty sinks.  This is how I roll with holes...

Enjoy the recipe, friends!

Sunday, December 19, 2010

Is This Stuff Contagious?

I'm thinking it may be.  Or at least the symptoms.  Do you think one can just catch the symptoms?  Allow me to explain.

Early last week, my husband left for work...late.  He had been up 2 hours earlier, but just couldn't seem to get out of the house (eeek!) and he does NOT have the excuse of "I had to style my hair", because he's pretty bald and what's not scalp is cut with a #1 attachment.  He was just late and couldn't explain it.  My husband?  Is never late.  Ever.  I?  Am always late.  Always.  I really don't mean to be.  Really.

But it's not just that.  About 10 minutes later, I heard the roar of his truck coming up the driveway.  He rushed into the house, explaining...with a look of utter shock on his face...that he forgot his cell phones.  You don't understand.  My husband would leave his glasses behind, rendering him legally blind, before he would leave his phones!  He looked at me in a very boyish manner and said, "I really don't know how that happened..."  Mmm hmm.

On Friday morning, I made my way downstairs to prepare my pot of coffee and...what was that on the counter?  My husband's thermos?  Full of coffee?  Okay, hold up.  His phones and glasses would be left behind before that thermos!  A little while later, I heard the text message alert on my phone.  It was my husband.  "U can hav my coffee.  Dont say a word."  Mmm hmm.

This morning, he was a busy little worker bee in the kitchen.  Next to the stove, he had a carton of eggs out...loaf of bread...some frozen hash brown patties...frozen sausage links...and full pot of coffee.  Each Sunday morning, he morphs into Emeril and whips up huge family breakfasts, then proceeds to hound the kids and I until we're ready and in the truck for church.  Remember, he lives in the "House of Late".  If he doesn't hound, we aren't getting anywhere on time!  So as I'm pouring my coffee and having simple conversation with him, he grabs ahold of the electric burner coil of the stove and yells out, "OW!  STUPID $%@..."   

He said he wanted to "level" the burner coil, because it looked a little crooked.  But forgot he turned it on.  Um?

I've done a lot of things, but not that.  I've forgotten to put deodorant on, and forgot to rinse the shampoo from my hair before I shut off the shower water.  Oh, and I've grabbed ahold of a hot cookie tray without a mit (and didn't feel the pain, because my hand was hot/cold dead).  But walking out without my coffee?  Never.

I guess it could be a "sympathy flare".  Or pseudo flare.  Whichever.  When I was terribly ill during my pregnancy with our daughter, he was also ill.  When I went through nearly 2 years of monthly migraines, he had low grade headaches.  But this is too much.  Yesterday, I slipped down the stairs (again) and he was there to see it.  I could see that he was upset by it.  I'm sure this stuff scares him at times.  I'm sure he goes through moments of playing his own version of the What If Game.  But geez...he doesn't have to go and grab a burner coil over it.  One of us has to exhibit a certain level of safety around here!

And there he is..."HONEY!  It's 9:04!  You still have to get a shower.  We're going to be LATE!"  Mmm hmm...

Monday, December 13, 2010

Needle Nostalgia - A Story of Failure

I became slightly desperate for spring water tonight, so I went downstairs to the "guinea fridge".  I didn't find the water, but did find 2 boxes of unopened Avonex!  This is an indication of 2 things. 

1) That I have been well trained by my husband not to go into the garage.
2) That I'm perfectly justified in having my husband committed for treatment of OCD.  I stopped using Avonex in 2006.  :::crickets chirp:::

If anyone's wondering about the term "guinea fridge", it's the refrigerator we have out in the garage that houses my husband's water bottles and the occasional 5 year old frozen Hungry Man tv dinner.  In case of freezer door to access Salisbury Steak.  I didn't coin the phrase.  Urban dictionary did. 

Seeing the Avonex brought back the memories of the 6 months I fumbled, stumbled, and bumbled my way through taking it.  Yes, I received an instructional video.  Yes, I was offered training by a real nurse.  Did I take the help?  No way.  Not my style.  I'm not the "read the directions" kind of gal!  I'm the "I got this" gal!  And I didn't "got this" when it came to injecting myself.  But I have memories I can share.  We can laugh together, right?

I remember how dramatic it was to sit and watch the video.  And the diagrammed areas in which I could inject.  I chose thighs over stomach and ruled out buttocks after I failed to reach around properly.  I mean, I nailed myself with the needle and all?  I just couldn't figure out how to push the little plunger.  Awkward...

My husband was not willing to help me and don't mistake this sentence for me coming down on him...I'm not.  Some of us are cut out for things like this and some of us aren't.  I was thankful for his honesty.  Part of it was that he knew of my aversion/phobia of needles.  During my pregnancies, my negative blood type earned me rhogam shots.  And tests.  Shots.  Labs.  You know how it goes when you're expecting.  Pin cushion time.  When it was time for my c-section, the nurse was trying her heart out to anchor the IV.  She tried the typical spot...crease of arm.  No luck.  Wrist?  No.  Hand?  Fail.  Other hand?  Nope.  Other wrist?  Eh eh.  By that time, I was sweating profusely and...swearing profusely and...I said, "I think this would be less painful if you used a BUTTER KNIFE!!!  GET SOMEBODY ELSE IN HERE!"  In came the pinch nurse, who nailed the opposite arm in .02 seconds flat.  Time for the epidural block for surgery.  6 tries later, as I was nearly vomiting from the pain, I told my husband I refused to have our baby.  Get them all away from me.  On the 7th needle shove, by golly, the guy got it.  Hate needles.  Hate.

On my 1st neuro appointment, my doctor said, "you're young, you have 2 small children, you need to do this (take Avonex) for them."   So I did.  I'll do anything you want me to when it comes to my kids.  I iced my thigh beforehand.  First shot down, what I thought was a lifetime to go.  Felt like a sledgehammer hit me in the thigh for the next day or two, and my body felt as if it was hit by a large automobile.  Icing was so not the right thing to do!  By a month or so into the meds, I was feeling the side effects throughout the week, not just a day or two.  The large automobile morphed into a semi.  But I was doing it for my kids.  Literally.

I used to take their Christmas picture to the bathroom with me.  I'd stare at it in a "this one's for you" manner...tears running down my face as I jammed the needle into the thigh du jour.  Or however you say "of the week".  Du week.  Tried as many different methods of injecting as I could think of, but all I felt was stinging pain...and a full week's worth of feeling completely and utterly horrendous.  On one occasion, I hit an artery and blood came squirting out of my thigh.  I collapsed in fear, afraid I'd just killed myself.  My neuro chuckled when I called her cell and said, "oh my God!  I just tried to give myself a shot and I'm bleeding out!  Should I get myself to the hospital?"  This woman should get a medal for enduring me.  Seriously.  But she wasn't giggling for long, once it became apparent that my condition was worsening slowly but surely.

Six month check...I didn't do so well with the usual tests.  My sight was worse, my reflexes were off, and I had a great deal of pain all over.  She prescribed an MRI that showed new lesions, and they were active buggers.  A blood test liver didn't appreciate Avonex.  A big ol' "D/C" went on my chart in red.  Discontinue, baby.  Discontinue. 

"Only about 2% of the MS population reacts negatively to Avonex, Tina..."

Let me introduce myself.  I'm 2%.

The decision was then mine.  I chose "change diet drastically, stop doing things I shouldn't be doing, do my best to live life in the highest quality, and above all else...pray fervently".

Part of me wants another MRI.  The most recent one I've got is a brain scan that was done about 6 months after the one that showed Avonex kickin' my tail.  It showed a reduction in lesion load, and my largest lesion (4mm) was barely visible on that scan.  Another part of me doesn't want the scan, because I just want to keep on keepin' on.  I still have ms, that I'm sure of.  And I'm a failure when it comes to traditional treatments, so it's not as if it would lead me to another option.  I even failed natural supplements.  Maybe it was the fact that I was taking approximately 32 pills a day?  Nah!  Couldn't be!

So this is me.  2%.  A medicinal failure.  A supplement failure.  I am God's hands.  God and a gluten-free diet.  And a lot of coffee.  Cheesecake, too.  I think cheesecake has healing properties...

"The Lord is with me; I will not be afraid...The Lord is with me; He is my helper." Psalms 118:6-7

Saturday, December 11, 2010

Stuck In Circumstances...

Last night, I was driving home from my friend's house with tears in my eyes.  These were not pseudobulbar tears, they were the real deal.  We had just come from watching a beautiful Christmas production at her elementary school. 

I haven't been in the Christmas spirit lately.  Not that I don't love the Lord, because I do.  Not that I don't celebrate Jesus on a daily basis, because I do.  I dislike the "let's buy stuff" theme.  I really, really do.

I haven't been very steady lately.  While I'm sturdy in build, I'm unsteady in gait.  But!  I must be pulling it off, because no one has noticed.  Except for me.  Yesterday, for some reason, people kept bumping into me.  It took a great deal of energy to steady myself after each encounter.  In the evening, we went to a Christmas show (excellent show, by the way) and it was crowded both before and after.  I was bumped into a minimum of 10x.  On one occasion, a man banged into me with a pretty good amount of force as we were in a cattle chute-esque line...and I subsequently bumped into a woman, who was NOT thrilled with me despite my apology.  Silly woman.  Clearly, she did not realize that she could've been critically injured had I completely lost my legs and flattened her.  Again, invisible symptoms.  Next time, I'm so taking a cane along.  Then maybe the man would've apologized to me, or at least been more careful of me.  And maybe the woman would've at least understood.  Or not.

I haven't been very smiley lately, at least not for long.  I see my grandmother slipping away.  It hurts.  A lot.  My assigned role has transitioned from "medical decision maker" to "protector".  She's made it quite clear that I'm to essentially "keep them away" from her.  "Them" equals the doctors and surgeons.  Because they feel she's not mentally competent to make sound decisions regarding her care, which she totally is, she has asked me to do everything in my power in this regard.  My power?  I don't feel very powerful.  Wait.  She literally just called.  She wants a coffee coolatta from Dunkin' Donuts, and says, "I'm not allowed to have it, so pretend it's yours.  Don't let them take it away from you."  I'm now Protector of Grandmother/Dunkin' Donuts Product.  I'm coming off the elevator with a Heisman Trophy stance...coolatta tucked firmly in my right arm, left arm extended in a "pie face" formation.  They shall NOT take the coolatta!

So that's why I was tearing up on my drive home.  And then it hit me.  I'm a hypocrite. 

I had just told a student earlier in the day that my prayer for him was to not focus on the one negative thing that may happen in his day, but to appreciate the 10 positives that came before and after it. 

Hypocrite.  Completely.

It's SO easy to get caught up in my circumstances.  I don't remember what it's like to feel 100% healthy.  I barely remember what it's like to have enough money to do things like pay our bills AND take vacations, or have overnight trips, and provide Christmas gifts for not just our kids, but for others.  I sorta remember what it's like to not have to pee on a 20 minute schedule.  I definitely remember what it's like to stand firm when I'm bumped into...and to successfully put out a 70-80hr work week...and to spend happier times with my grandmother.  Circumstances.

So today, I will make a conscious effort to count my blessings.  But before I do that, I will accept the challenge of my recently woken daughter, who wishes to race me in Mario Kart.  Oh hey!  Blessing daughter.  #2...Mario Kart, because it's perfectly acceptable to scrape your car into things in Mario World.  Sometimes, I wish I lived in Mario World.  That may be my next blog.

Be well, friends!

Thursday, December 9, 2010

I'm A Nyquil Commercial

Sniffling, sneezing, coughing, aching, stuffy head, fever, I can't rest...

Keep in mind, I'm germophobic.  I use my shirt sleeve to open a door.  I use a napkin to pick up and use a salt shaker at a restaurant.  I also use one to handle tongs at a salad bar.  I use my own whiteboard marker at school, because while I love the children with every fiber of my being...they've typically just wiped their forearms across their running noses or sneezed a handful of "love" into their hands and then want to use my marker or hand me my water bottle.  Love you, sweetie...but you're a 4' bundle of germs.  Unarguably adorable, made in the image of God, but germy nonetheless.  Why am I like this?  I don't want to get sick.  Scratch that...I can't get sick.  Why?  Because "sick" gets ms in an uproar and it nails me with a "pseudo-flare".  Pseudo?  Let me tell you, it feels quite real to me!  Because right now?  I am sick.  And ms is being quite dramatic over it all.

So for example, the only thing I can imagine doing is sleeping.  My eyes are burning.  I feel like that handful of goo I used to throw against the wall as a child...where it would ooze down into a heap on the floor.  Pick it up, toss it again...WHAP...oooooooze.  Yes.  That's me. 

I feel a little sorry when people get colds and they don't have an underlying neurological disease.  I mean, all they get is the sniffling, know the rest.  But me?  I also get leg weakness, eye blurries, slide-down-the-wall-fatigue, muscle spasms, and peeing upon coughing, which is a pretty cool trick.  How boring their lives are.  Truly.  Jealous much, otherwise healthy folks?  Mmm hmm.  I thought so.

And everyone wants to help, God bless them.  "Why don't you take an immune booster?"  Well, my immune system is already quite moody...I'm not sure I want to "boost" what's already in combat against itself.  Or as one dear hearted friend suggested...I could drink this funky stuff from the health food store.  A whole thing of it, not the equivalent of a shot glass.  Know what?  I'd rather cough up both lungs and a spleen.  But it's the thought that counts.  Thanks for trying to help me, but just leave me be the ooze on the wall, that slides down into a pile on the floor...look away...look away...

Wonder if the makers of Nyquil are in the works of a medicine that goes like this:

Sniffling, sneezing, coughing, aching, stuffy head, fever, leg weakness, blurry eyed, oozing, stiffness, dribbling, so I can stay awake long enough to drink my coffee...........medicine.

Oh.  And make that all possible in a shot glass-sized package.  Deal? 

Sunday, December 5, 2010

I'm Not Drunk...I Have MS

I've talked before about making up t-shirts that say things like: 

"I Have MS, Be Nice To Me"
"Today I Am Weak, Be Nice To Me"
"Today I Am In Pain, Be Nice To Me"
"Today I Don't See Well, Be Nice To Me"
"Today I Am Angry, Stay Back 500ft"

I'm considering adding to that...

"I'm Not Drunk, I Have MS"

The thought came to me on Friday night, when I had been treated to late night "breakfast" by a dear friend.  Previous to breakfast, I had a very stressful incident that woke ms from slumber and it decided to weaken my legs for good measure.  So in I walked, somewhat shaky legged.  No one noticed a thing, because it was about 10pm.  But hours later, at approximately 2am, I had a hard time standing from the booth and walked very gingerly to the cash register.  Everyone in the diner, consisting of truckers and drunks, stared...and I know what they were thinking.  FLAGGED! 

I made my way to my car and noticed an officer sitting in the parking lot.  As I started down the road, he pulled out behind me.  Great.  All I could think was that he saw me walking crookedly out of the diner and slowly ease into the driver's seat.  He followed at the traditional "let's see what this nut's gonna do" distance.

I was already going through it in my head.  Handing over my license and registration...wishing I had that MS Membership card I've poked fun at...and explaining, "Officer, I know how my diner exit must've looked?  But I haven't had anything to drink.  Truth is, I have ms."  Followed by, "so rather than falling backwards while closing my eyes and holding my arms out, rather than face planting while walking heel to toe, and rather than sticking my finger in my eye while trying to touch my nose...could I save you the trouble of all that paperwork by just giving a breathalyzer?"  I followed those thoughts with a quick prayer that went something like, "Lord, I've really been through it today.  Could you spare me the hassle?"  A few miles down the road, after I successfully stopped and restarted at 2 red lights and entered the highway without swerving, he turned off.  Whew...

As I made my way home, I wondered how many times people have thought I was drunk when I wasn't.  I do stagger around at times.  I've got beautiful bruises on my right arm from banging into things.  I've walked directly into a wall before.  My car has a flattened dent in the side.  I've had to replace 3 of the 4 wheels over the past 6 years due to whacking curbs with such force that I've bent them.  I've held my keys in my hand and dropped them for no reason.  I misplace my words in a sentence sometimes.  And the pseudobulbar affect?  Who wouldn't think to themselves, "drink much?"   

Maybe I really should get that membership card from the NMSS...

Tuesday, November 30, 2010

"They're" Rushing Me...

Am I right that the stores began advertising for Christmas sales somewhere around Halloween?  And now that we're at the end of November, I just heard a couple of folks starting up with talk of 2011?

Forgive me, but...whaaaaaat?  How about this.  How about "they" try to see things through my unfocused eyes for a different perspective...

Clearly, "they" don't look at their children and wonder where the years have gone.  I mean, didn't I just give birth to them?  Or is it just that I look like I did...because the baby fat never disappeared.  And now they're suddenly in middle school?  And "they" didn't just celebrate a 20th reunion, which was yet another reminder of just how quickly time goes by.  I'm pretty sure "they" haven't spent hours, days, weekends, weeks, and months by the bedside of a dearly loved who was incredibly vibrant just...wait, wasn't that just yesterday?  Sure seems like it.

Maybe I'm not wanting time to pass me by, because I begin each day with a physical inventory of current ms symptoms in order to know what sort of day it's going to be.  Or because I occasionally hear the depressing prognoses of several neurologists playing in my head.  Let's just say I've learned not to rush things. 

I love sunrise.  I don't love that I'm awake for it, but I do enjoy the beauty of it.  I get that flashback of "senior week" at the beach, the peace of that exact moment, the comfort of being in the company of a dear friend.  Makes me feel young again.  I find the moon and stars fascinating.  I love the changing leaves.  I love blue skies, cloudy skies, and everything in between.  I love watching the woodpeckers that come to feed at the woodpecker smorgasbord my husband crafted out back...just for me:-)  I love the sound of my kids' laughter.  I love the way my dogs run to and jump at me when I walk in as an expression of their unconditional love.  My husband no longer runs to and jumps at me.  My novelty has clearly worn off after 17 years of togetherness.  (lol!)  But sometimes we do throw pillows at one another, or balled up socks...and I love that, too.

I'm trying to enjoy today for what it is, because tomorrow comes soon enough, especially when you're an insomniac.  Tomorrow is its own hot mess!  A new day to try to get my hair just right (not happenin'), a new day to find my keys (that are in my hand) and a new day to sit on the sunglasses I forgot to put in the proper place in my car.  Poor little things...they never stood a chance, nor saw it coming.  Size matters.

Holiday milestones will be here soon enough.  Until then, my advice is to be blessed by today, check your left hand for your keys, and consider the safety of your sunglasses when you carelessly toss them on your seat.  Anything less and you're missing out;-)

Sunday, November 28, 2010

Taking MS To A Class Reunion...

Ah yes...class reunion time! 

Preparation meant:
  • Try on approximately 16 different outfits to see which one makes me look less spherical. 
  • Find which jeans elongate my 5'1" stature.
  • Find which shoes have the largest heel I can walk in without falling, again, to give the illusion that I've not lost an abnormal amount of height since graduation.
  • Accessorize in a manner that says, "I still got it".  Whatever "it" is.  Or was. 
I was a What Not To Wear episode.  In summary, I felt like I shouldn't wear any of it.  But the reality is...I've known these folks since about 1977.  I'm not fooling anyone with a crafty pair of jeans or dazzling top.  I'm not 100lbs.  I'm not 5'7".  Let the secret be out. 

So there I was, entering the establishment and immediately checking in at the...ladies room.  When I'm anxious, my bladder shrinks to the size of a pea.  No pun intended.  Upon exit, I was scanning the crowd for anyone who looked like someone I used to know...but in a "20 years later" fashion.  And wondering if, when I approached them with a warm hug, my head/neck tremors would act up and they'd look at me sideways.  Or that I'd lose my balance a bit, as I do when I hug someone...which results in a slightly longer-than-appropriate hug.  That can be very awkward for both parties.  Thankfully, before I had much more time to consider the possible scenarios, I spotted one classmate...and another...and look there's another!  Yaaaaay!  My friends!  Oh how I'd missed them!  They seemed to know me upon first glance and vice versa.  Whew.  That was easy...

Side note:  I love that most of the guys are bald.  My husband didn't feel so out of place.  Seriously though, how could they not be with the abundance of hair gel and mousse they wore circa 1988-1991?  If they only knew the price of having that impressive, spikey hair...oh who are we kidding, ladies.  They wouldn't have changed a thing!

So when you're used to drinking water and you decide to enjoy 2 Cokes in succession, the bladder isn't pleased.  It identifies the black, caustic liquid as a foreign substance and wishes to rid itself of the offender as quickly as possible.  After 4 bathroom trips in the first hour, I switched to water...which resulted in another 3 trips, though better apportioned. 

Finding my way to the restroom, maneuvering through the large crowd of folks...many of them swaying...became quite an obstacle.  I had to navigate a series of steps, as well.  They were narrow, which added an extra little spice to the venture.  All I could envision was taking a spill similar to the one I had about 6 years ago at a child's birthday party...where I fell down narrow steps, hit the back of my head, and knocked myself unconscious.  It ain't a party 'til someone wants to call an ambulance for your mommy, right kids!  RIGHT!

But I made it...all 7 times.  Without falling, without so much as tripping.  Sure, I bumped into a few folks, but they didn't seem to mind...probably didn't even notice.  And then it happened out of nowhere.  The lights went dim, the colored disco ball spun, and the music began.  Oh no.  I never, ever used to turn down an opportunity to dance!

I immediately took a step toward the dance floor, but stopped myself.  I decided it was a "No" with a capital N.  I simply couldn't dance.  I'd get overheated, my eye would blank out, my legs would shake, and I'd stagger out.  But wait.  These are the people I've known since 1977.  And these are my favorite songs.  MS...may I have this dance?  Just this once?

It Takes Two!  Apache - Jump On It...complete with applicable "cowboy with lasso" dance!  Lady Gaga for good measure!  Perfect!  As predicted, I lost the majority of my vision in the left eye, my legs began to shake, and I knew it was time to take my "dance partner" home to recuperate.  But I'll tell you, my head/neck tremors coincided perfectly with "Bad Romance".  It's not the easiest song to dance to, so I just sort of moved my body a bit and let the tremors do the rest.  My girlfriends were clapping with approval, so I must've been doing something right.  Come to think of it, maybe that truly is the correct way to dance to a Gaga song?  Hey thanks, ms! 

What was I worried about, you know?  I was able to be there and have a blast!  I got to dance, which is something I've always loved to do and used to be fairly good at (though not anymore, but it's still fun)!  And I was able to reconnect with some wonderful folks that I've missed dearly over the years.  I think that's worth some leg weakness, eye blurriness, and a little peeing for good measure.  That's what panty liners are for!  Did I just say that out loud?  Wow.  I really AM just like my grandmother...

But behind every wobbly woman is a strong man to shove her into the truck.  Many thanks to my dear husband for being that strong man.  In sickness and in wobblies and in temporary blindness and in clarity...he loves me through all seasons.  And I love him right back :-)))

Friday, November 26, 2010

Thankfulness...For Trials?

So there was a challenge put out there...can I say I am thankful for the past trials in my life? 

Pfffffffffffffffft!  Oh that's a good one!  :::holding stomach from laughter:::  Oh wait, they're actually serious?  Hmm.  "Trials, traumas, and tragedies".  I can think of a few right off the top of my head.  I never imagined taking a moment to be thankful for them, however.  Because I could never be thankful for those past events in and of themselves.  Yeah, yeah...I know...they want me to find the blessings that came from them.  The "lemonade".  The "half full".  I suppose it's a legit exercise in counting blessings. Guess I'll play.

Well, I suppose if it weren't for traumas/near traumas, I wouldn't have the keen intuition (that occasionally crosses over into neurosis) to protect my kids from certain situations.  I wouldn't have taken special care to learn how to defend myself.  Forget holding my keys a certain way or trying to spray someone with a highly concentrated food seasoning...I will have hit an attacker 6 ways to Sunday before he could think about my keys or whether he'd like a little salt with his pepper.  As for the tragedy?  I'd have to say it gave a portion of our family (Mommom, Mom, and myself) an extra serving of perseverance.  There sure are times we wish that 4th member of our mighty female crew were here with us.  Although, the way she was?  We might have been kicked out of more than a few of the hospitals and skilled nursing facilities Mommom's been in if she were here and helping navigate care.  I'm pretty sure certain language is prohibited when speaking with medical professionals.  It would've been fun to watch, though... 
Past trials?  Much easier to see the blessings from those.  I couldn't appreciate my husband for the man he is had I not been through the fire in the past.  I couldn't appreciate my life had it not changed direction in a 180 degree fashion.  I went from working 7 days a week in my own business, chasing medical insurance working with kids with learning differences.  I don't use "disability" to refer to my students.  Because those kids?  Are the most brilliant kids I've ever had the blessing to interact with.  Some can perform mental math equal in speed to a calculator.  Some can draw pictures that look like prized art.  Others have submitted storyboards to cartoon producers.  I'm constantly in awe that God would use me in this way.  If I've told them once, I've told them a thousand times.  When they grow up and take over the world, don't forget me:-)
Yes,'s your turn.  You can stop raising your hand and yelling out, "ooooh ooooh ooooh!"  Best for last.  (spew.)
I'm  :::shaking with annoyance:::  thankful for ms, because  :::deeper and more peaceful state of mind:::  it has kept me close to God.  'Cause I know me.  I've known me a long time, now.  And what I know is, I would barrel through and do things on my own, making a lot of messes in the process.  I know this, because of  (drums rolling) self-inflicted past trials!  Hey how 'bout that!  It's like a Seinfeld episode, all tying back to the main theme!  I suppose this really is a good exercise...
If I didn't have ms, I wouldn't be able to appreciate the little things that aren't so little.  Eyesight, even when it's not perfect.  Mobility, even when it's not graceful.  Hearing, even when it's not 100%.  Cognition, even when it's running on 4 cylinders of 12.  Yes, I'm a v12:-)  I wouldn't be able to talk with others who are either newly diagnosed, or in the process of testing, and give them comfort.
Where's my comfort?  That's easy.  It's my faith.  Well, I wouldn't say it's "easy", because there are times I want others to comfort me.  But that's a tall order to place on my husband or my friends, though they do often bless me with thoughtful acts of kindness.  When my emotions are bungee jumping and my body's failing me, there's only One Who can handle me.  Yep.  God. 
Some people might have "Allstate".  I've got God.  I'm in the best of hands.  That's what I'm most thankful for.  Since the trials have shown me that, I suppose I can give thanks for them afterall:-)

Wednesday, November 24, 2010

I Cleaned!!!

I really, really did! 

I woke up at 7am on Day 1 of my Thanksgiving Break (capitalized, because it deserves respect) with the strong desire to...clean?  When this happens (once or twice a year) I have to be very careful to make sure it's legit.  Because if I get all the supplies out and it's not? 

After my 3rd cup of coffee, there was nothing I could do to stop myself.  I wiped the stove top.  Then, I sprayed bleach spray in the stained sink.  I watched as it morphed to...stainless!  Cool trick, Clorox!  I became even more motivated!  I attacked the counter...the face of the dishwasher...and microwave...stove...refrigerator door...and dusted the tv stand...and washed the picture window...and before I could think twice, I had the mop in my hand!  Someone call 9-1-1!

I excitedly pushed and pulled the mop with true glee, watching the kitchen floor come alive!  Adhering to my true nature, I became over-confident.  I drizzled oil soap all over the hardwood floor...and just like that, it went away.  The energy, that is.  Stupid pushing and pulling!  Get's me EVERY time!  Every time.

I felt as if the room enlarged 5x its usual size as I looked out across the floor.  I stood there, steadying myself with the mop handle, resting chin on top of hands.  My head and neck tremor gave a slight shiver.  The room spun slightly.  My daughter asked if she could finish for me, but I declined.  It resembled an athletic event at that point, and I would not throw in the...mop.

I put on some old skool funk and disco tunes, because how could I not move to those, right?  And if my head/neck tremors kicked in, maybe it would look like I meant to do it.  Like magic, the music helped me to finish my floor!  And my daughter informed me that she was proud of me:-)  If there's anything I want my kids to learn from my life, it's perseverance.  Hopefully, they'll get that part and not the "my mother barely cooked and cleaned, but she twitched and went to the bathroom a lot" part. 

Anyway, how's my floor look?  Like someone with ms mopped it, that's how.  But you know what?  It's done!  That's what's up, ms!

Tuesday, November 23, 2010

I Am On Break

...from work.  Not from life, nor from ms. 

And it comes in good timing, because I was on the verge.  The verge of what, I'm not sure.  But it was big, whatever "it" was. 

I could tell "it" was coming, seeing as how I was having increased difficulties getting out the door for work.  See, there's this strange thing that happens to me when the going gets really, really, ridiculously rough?  I get dysfunctional. 

Like I get up for work 2 hours before I have to walk out the door, yet I can't.  I get "lost" in my bedroom, when I'm dressing.  No outfit looks right and I begin to slowly, methodically change top after top after top.  Keep in mind, I really only have about 7 of them.  My rational brain says, "you'll wear it tomorrow, why are you obsessing?  Put something on and GO!"...but I can't.  Then I can't fasten my necklace.  Fingers won't work properly.  I spend another 5 minutes trying.  Put that necklace back and get another...more time, more anxiety, more stress.

Then it's time to blow dry my hair.  I obsess over the fact that it never looks the same from the time I style it at home to the time I arrive at work.  So I find myself stopping 2 steps out of the bathroom to turn back and look at it, then 4 steps, then to the door and back.  It's like trying to catch Santa placing the gifts under the tree...I'm trying to spot at which point it goes downhill.  I've narrowed it to somewhere between my front door and the car.  I wonder if it's that I become stressed out and run my hand through it?  Nah...can't be;-)

I get to the end of the road and can't recall if I turned off the coffee maker.  Did I unplug the hair dryer?  Did I lock the door?  Drive back...yep...all 3 are done.

Late for work.  Again.

It's not always like this, mind you.  It's just when I'm coming undone.  I was faring well with the gnawing pressures and unfortunate circumstances surrounding me as of late.  So what threw me over the edge into "Dysfunctional Land"?  The award goes to...MS! 

Can't find my words to form eloquent speech.  Fatigue x 3.  My right leg has decided that it wishes to stop and smell the roses, and my left leg is wobbly and a little floppy.  Stumble...sputter...grab onto hard surface or nearest person or fall.  Then try to find the words to describe what just happened.  It is at that point where I question whether or not it was a good idea to leave the sanctuary that is my bed.

But perhaps most troubling to me is the new head and neck tremor.  I discovered that while asking a grocery store clerk where I might find the additional quantities of sweet potato chips.  "Excuse me, sir"...head and neck shiver...(omg, what the heck was THAT???  I hope he didn't notice.  Oh great, he's looking at me sideways.  He SO noticed.  Quick!  The chips!  Ask about the chips!)  It's been happening a handful of times each day.  And night.  Even when I'm just about asleep.  Don't get me wrong, I don't usually mind tremors.  I get them often in my fingers, hands, and arms.  But I'm not a fan of these.

I often fool myself into thinking I have control over everything in my life.  I appreciate the reminder that ms provides in showing me that I control very little, if anything.  So Lord, if You don't mind...I'm giving it all back to You.  Sorry I tried to carry it on my own.  Obviously, my legs aren't strong enough to bear the load.  And, at this point, ms is making me feel a little like a puppet on several strings. 

I found a video that I identify with.  And, like this guy...I'm ending up on my knees, slumped down in humility.

It's all Yours, Lord!

Saturday, November 20, 2010

Oh So Misunderstood...

Call it the full moon...or the insane stress level over the past week, but I became highly reflective this afternoon.  I have this feeling of "angry yuck" and wasn't quite sure what that was all about.  I thought it could be identified as "self-pity", but I was wrong, because there's nothing inside of me that feels sorry for myself.  I've determined it to be "misunderstood". 

Feeling misunderstood is so very frustrating.  On the outside, appearing so normal, happy, even a little shiny.  I just had my hair colored.  Shiny is a good adjective.  Inside?  I'm tired, exhausted, and beaten down.  Wait.  Maybe those 3 words are really all the same thing.  Add to that - sore, and another helping of - tired.

Maybe part of the problem is my lack of disclosing to others how I'm feeling from day to day, but come on, that's not realistic.  So I don't.  I go to work, I come home, I take care of my kids, go to bed, stare at the ceiling for a few hours...rinse, repeat.  The only time I really delve into ms and its effects on me is here, in my therapy-esque blog.  Aren't the readers lucky?

It's like walking a tightrope, really.  I want the validation, but I don't want anyone to make a fuss.  I want people to understand, but I don't want them to feel sorry for me.  Man, that's not an easy feat for anyone to achieve.  I need to remember that and not get annoyed with people when they can't magically understand where I'm at.  I still think my t-shirt idea would solve everything...

I give thanks to God for my friends who "get it".  It brings me to tears to walk out my front door to a medium DD coffee on my porch, 2 handfuls of sugar and cream balanced on the lid and a note that says, "hope you feel better".  It means the world to have a friend look me in my blurry eyed, beyond exhausted face and say, "I love you, I'm thinking of you, and I'm proud of you" for being at work today.  I don't ask for these things, but it's a welcomed blessing when they happen.

Sometimes I feel like I completely understand my life with ms, seeing as how I've been living with it for almost 12 years now.  But there are times I feel like I'm back at square one!  I think there's a reason "lunar" and "lunatic" are similar...ha!

The New Cool...

It's late on a Friday night and I'm sitting here at my computer, listening to dance music.  My cat is laying across my desk, staring at the screen.  Sometimes, if I type really, really fast, he'll try to catch the letters.  My dogs are snoring and passing gas.  My husband is snoring and passing gas.  Could someone kindly pass the Febreeze?  Thanks much.  And I have a tall glass of spring water to my immediate left.  This is the new cool.

The old cool?  Well, Friday nights meant making my hair as ginormous as possible, stuffing myself into some acid wash jeans, poppin' the collar underneath a sweater, picking up my best gal pal, and hitting the town.  If we weren't out on the town, we were at the teen dance clubs.  But mostly, out on the town, cruising up and down the local streets, racing boys who thought they had faster cars, and generally wreaking havoc.  We belonged to no one's clique.  Everyone was our friend and vice versa.  Plain and simple?  We were pretty cool girls in a pretty cool car who drew a pretty sizable crowd.  And can we all agree that the strong aroma back then was Polo cologne and Drakkar?  To me, it didn't matter that the guys bathed in it.  Stuff smelled good.  Okay, so maybe that's one positive point to the olden vs pet gas.

I saw my ol' best gal pal in the grocery store a bit ago.  Haven't seen her in probably 20 years, but thought of her often with nothing but the fondest of memories.  When we noticed each other, we both let out a shriek that was audible throughout the entire store!  People were staring as we squeezed one another until our eyes felt funny.  It was determined then and there...we're still cool.  Because now, we're pretty cool ladies who drive pretty cool family cars and yes, we still draw a crowd. 

I used to love dancing under the strobe lights in the club.  I'd have them playing "The Men All Pause" in no time, because how cool was that to dance to?  But now?  I enjoy seated jamming to "Who's That Chick".  Not Madonna's version, I'm talking Rihanna and David Guetta.  Seriously, if I tried to dance to this with my stiff and sore and creaky ms body?  I'd end up in traction, but it would be well worth it.

Throwback mall trips are now grocery store extravaganzas.  Light-to-light races against silly boys is now a speedy game of what I call Traffic Frogger, because I have to go to the bathroom and am praying to make it. 

MS sure has thrown a wrench into things, but I'm pretty sure this is the new cool for most of us 30-40 somethings...neurological disease or not.  Yes.  This is the new cool.  And the men?  They still pause, but for very different reasons.  Maybe because I've tripped over nothing, dropped something, walked into a pole in the aisle of the grocery store, or achieved a week's worth of groceries in a tiny cart...nonetheless, I've still got it, baby!

I wouldn't mind a remix of my old favorite, where I sub in my own lyrics.  "The men. All. Pause. When I walk into the wall...the men. All. Pause.  The men. All. Pause. When I drop that jarofgrapejellyanditsmashesonthefloor...whoo!"  Clean up on aisle 8?

Thursday, November 18, 2010

I Hereby Declare No-Work Wednesday For All MSers!!!

Wouldn't that be great?  Off on Wednesdays?  Or is it just me who seems to need that midweek rejuvenation?  Because I'm dragging come Thursday.  Sometimes, literally.

Today is that day.  Dragging Thursday.  I slosh my legs forward and backward and call it "walking".  Yes, I know it's a blessing to slosh...but sloshing makes me tired. Very. Tired.  You know, on account of the friction and all.  And not in that 70's corduroy way.  This is feet on floor friction.  And if someone is daring enough to touch me?  ZAP!  Do I feel badly that they got a shock?  Not really.  Welcome to my world, man!

Speaking of "Tired. Very. Tired.", I nearly fell asleep at my desk during the small amount of free time I had.  Clearly, I can't be trusted with any amount of free time...just like when I was a kid.  Wearing corduroy, bell-bottom pants.  With great friction.

The thought of going home to 4 excited dogs, who feel the most appropriate manner of greeting me is by flailing themselves against my legs, barking incessantly, makes me tired.  Let me tell you who I'm no match for.  Our basset hound.  He's long, he's strong, and he's low to the ground.  He's got the football-style chop block nearly perfected.  Thankfully, I fall in stages.  Not so thankfully, he climbs on top of me at each stage and smooshes his nose into my face, then tries to lick me in the eye once I'm completely flat on the floor.  I so love him.  Like a heart attack.  Very. Tired. 

The process of disrobing from professional attire and accessories is exhausting.  Come on, it's the 4th workday in a row of dragging a brush through my hair, lifting the bottle of hairspray, shooting myself in the face on account of a poorly timed finger tremor, re-aiming for the hair, transitioning to the bedroom, pulling dress pants over lead-filled legs, stretching a blouse over my fatigued arms, and carefully pressing the tiny gold topper of my bottle of Coco Mademoiselle lightly so as to smell juuust right...crap.  Forgot socks and shoes.  Back to bedroom.  Undoing all of that?  Tired. Very. Tired.

The Official No-Work Wednesday for MSers would mean, at least in my case:  Less black scuff marks on the tile floor (sloshing leaves a mark).  A surplus of coffee at Dunkin' Donuts (because I need 4x the volume on Thurs and Fri).  And a longer life for my rolling desk chair.  I go from not sitting in it at all, to basically living in it.  If I could scoot myself all the way up the hall to the main office, I would.  Either that, or someone should really walk the sign-in sheet down to me.  At least on Dragging Thursday and Forget It Friday.

These are just a few of the many benefits.  You know it's bad when you greet your boss, she takes one look at you, and says, "oh".  "Oh" is code for "you look like you died and nobody told you".  It means "you have the potential to scare small children looking like that and shuffling across the floor like Frankenstein".  It also means, "you could quite possibly be bad for business today".  Thus...No-Work Wednesday.  If I were allowed to take this honorary day off, I'd be fresh as a daisy on Thursday and Friday!  A daisy, I say!  A blurry, confused, disoriented the one behind this one!  But a daisy nonetheless...

Who's with me!

Saturday, November 13, 2010


As previously mentioned...very emotional week.  Lots of communications with medical personnel on behalf of my grandmother.  Moreso than the previous 9 constant months of her courageous battle with a staph infection that has comfortably situated itself in her lumbar spine.  It has taken her mobility.  She's on a feeding tube because, and I quote, "I'd rather be fed through my stomach than eat the crap they throw on my tray in these hospitals".  Duly noted, Mommom. 

Given the latest developments and decisions that needed to be made, only "face to face" visits would do, in lieu of our usual nightly phone calls.  No matter that she's an hour away.  It's coming down to the nitty gritty, and it's all quite scary for us.  But when she's looking to me for comfort, I can't crack.  When we're discussing the possibilities, I can't cry.  When an infectious disease team and a neurosurgery team are speaking to me about my grandmother as "the patient" in an unfeeling manner, I have to categorize that in my mind and communicate effectively.  It all boils down to the fact that...I have to control my emotions. 

That's kinda funny.  If they only knew that my med chart contains the reports of several neurologists, which confirm my most prevalent ms symptoms as "emotional lability and occasional pseudobulbar affect".  If they only knew that some of my daily fatigue is the result of trying to reign in and quantify my emotions...which are either really, really high - or really, really low.  If they only knew how often I go off to a solitary place (usually the bathroom) in order to recite the verse, "emotions can lead me astray, but the Word of God stands firm".  I control what others are able to see fairly well, except the occasional pseudobulbar affect.  The only control I have over that is...where I run to so they can't see it unfold! 

I was doing alright with maintaining a very "put together" facade.  I successfully made it through my work week, made it through screaming banshee children, and through those delicate conversations...all with a trademark smile.  That's my usual M.O., except on the inside, I'm varying between elation and sadness...for no good reason.  But this time?  Anger is visiting with no variation.  Just anger.  Huge. Anger.

The proverbial "cherry on top" came when a "friend" of my grandmother's stopped by to visit the other day and I happened to be there.  This woman's a real peach.  As my grandmother lay fighting for her life, this woman comments that she should get a wig, on account of her thinning hair.  And where is her make up, because she looks awful.  She's had the audacity to call my mother and question her as to whether or not she was doing "enough".  Nevermind that she's in the top ranked hospital.  She freely says negative things to my grandmother about the care she's receiving and belittles my mother.  Personal Rule #1:  My mother is off limits.  She's quiet.  She's sweet.  And she'd never say a bad thing to anyone, even if she really wanted to.  Because of this, I've seen people walk all over her...but she keeps it all in.  Guess who I'm not? 

From the minute this woman sat down, staring intently at my grandmother as we watched a soap opera together (why do people do that?  Stare at the sick person?), she carried on and on about how she doesn't see why "they" can't do this or that.  "They" meant my mother.  Oh temper temper...quick!  Scripture!  EMOTIONS LEAD ME ASTRAY BUT THE WORD OF....then I heard, "Tina.  Why can't she just..."  And that was it.  I let her have it.  Well, in the most controlled manner I could, but I let her have it all the same.

Another Temper Temper Test failed. 

I apologized to my grandmother when the lady exited stage left.  I was afraid she'd be upset with me, but she laughed and complimented me on my delivery.  I held her hand and felt the tears coming.  I was fighting them off with my every fabric...and just when they were about to fall?  Laughter.  Hysterical, pseudobulbar laughter!  My grandmother?  Also experiences pseudobulbar affect...and she began to laugh.  Hysterically.  At me.  And we continued to laugh.  At one another. 

You know, maybe pseudobulbar affect isn't a bad thing afterall!  Plus, it's really fun to say.  And how many points would that be in a game of Scrabble?  I can't think of a better person to share it with Mommom.  Because my Mommom's cooler than...

When you pass through the waters, I will be with you;
and when you pass through the rivers, they will not sweep over you.
When you walk through the fire, you will not be burned;
the flames will not set you ablaze.
For I am the LORD your God, the Holy One of Israel, your Savior.
Do not be afraid, for I am with you

Tuesday, November 9, 2010

Not Now, Fatigue!

Why is it my old friend, Fatigue, chooses the worst of times to show up?  Don't get me wrong.  Fatigue never left.  Fatigue is like the party guest who stays until the hosts are dozing off.  Fatigue is seriously annoying.

This has been an emotional week.  Sure, it's only Tuesday?  That should tell you something.  Emotions stink.  They exhaust me.

I've not gotten much sleep the past few nights, because my mind wouldn't shut itself down to rest.  I had to increase my usual 2 cups of coffee to 4 in order to look alive at work.  Today, because I was gearing up for the possibility of pulling an all-nighter down at the city hospital with my grandmother, I had my 4 cups in the morning, plus a biggie sized pumpkin spice latte, plus a ginormous soda.  My BCC (Blood Caffeine Content) was a .32, more than 3x the legal limit.  Got through my workday with minor tremors and received a call that she would not have surgery, thus no all-nighter.  I went down to visit for awhile, especially given the emotion surrounding the events of the day. 

I was fine until I walked out of the hospital and hit the cool air.  Fatigue washed over me like a wave.  A really, really big one.  With nearly an hour drive ahead of me, all I could say to myself was..."ugh crap".  Time to turn the radio way up and scream sing!  My singing is bad enough, but if I'm screaming it?  Not only am I effectively countering a bout of narcolepsy, but other motorists are safe as well!

...but there were no good songs on.  None.  I methodically switched between every station on the presets and realized that, hey, I'm totally not watching the road.  Too tired.  All those red lights in front of me make me anxious.  WAIT!  RED MEANS STOP!  And I was only about 10 minutes into my commute.  I knew it was going to be a long and painful drive.  Eyes heavy...foot heavy...wishing I could push a button and teleport home.  To bed.

All of the sudden, I heard the radio announcer say, "coming in at #4, the new song...Whip My Hair!" 

Whip My Hair?  Okay, I'll turn it up. 

OMG I'M AWAKE!!!!!!!!!!!!!!!!!

Within the first 30 seconds of the song, I went from falling asleep in the driver's seat to wanting to plant my foot to the floor and drive head on into the hardest thing I could find.  Unhooking the seatbelt first, of course. 

Obviously, I exercised self-control and didn't do such a thing.  Thank you, Whip My Hair, for saving my life and that of my fellow motorists by dislodging me from the grips of Fatigue and keeping me alert on the road.  Now I'm just hoping the song wears off so I can get a good night's sleep!

(Disclaimer:  If anyone is offended by my assessment of said song, because they love it?  Please don't be.  I'm thankful for it, seriously.  It saved me!  How can I not love it as well!)

Sunday, November 7, 2010

Taking MS Out For A Hike

A two mile hike.  Great time?  Yes.  Great friends to hike with?  You betcha.  Great idea?  Nope.  Why not?  Because there are no sidewalks or roads on a trail in the woods. 

The leaves had completely covered the hiding rocks and tree branches along the trail.  And the first half was all downhill.  Downhill + stealth rocks and branches = head bent downward to keep eyes on feet the entire time.  Head bent downward entire time = dizziness + leg fatigue.

But I got to see this!

Wait!  That's the bathroom.  I meant to say...I got to see THIS!

...and THIS!

...and THIS!'s a tree root growing out from in between two large rocks.  It reminds me of Poltergeist.  I was a little afraid.  All I could imagine was it attacking my face.

Toward the end of the trail, my legs began to feel as if they weighed about 350lbs.  Each.  By the time I got home, I had tinglies and fuzzies and electrical currents running down both legs.  Within the hour, my feet turned into blocks of ice.  Keep in mind, as you view this picture, that I'm only a size 8.  But with two pairs of my husband's work socks...a non-matching pair, because I took them from the box of lone survivor socks...I look more like a size 13.

I don't know what song you think of when you see this shot, but all I hear is...

I'm bringin' sexy back!  Yeah!  In fact, I warned my husband that he may not want to look for too long, because I can't be responsible for the after effects.  Multiple pairs of mismatched socks could very well be the hot new item at Victoria's Secret.  Allow me to let you in on the secret.  My feet are still cold.

It's as if I've stood at an outdoor hockey rink for 4 hours sans coffee.  I can't feel my toes or tops of my feet.  And I'm really, really tired.  However, this feeling, and lack thereof, is quite a hindrance to restful sleep.  But you know what?

I'd do it all over again.  Being out in the woods under the blue sky, puffy clouds, and changing leaves reminded me of when I was a little girl, out on "hunting" trips with my father.  He'd dress me up in bright orange, so as to not be mistaken for a small deer, and take me out in the woods to watch the animals.  He showed me how groundhogs would stand upright if you whistled to them.  They instantly became my favorite wild animal and still hold that title:-)  We never actually hunted, because he knew I would have wrestled his rifle away from him in protection of the animals. 

The retro trip was wonderful, but the friends I was out on the trail with were amazing.  Just like my days of standing at outdoor ice hockey rinks for hours, feet frozen numb...the experience was well worth the physical discomfort. 

Time with friends is priceless.  Being able to even complete such a hike is a tremendous blessing.  And being out in God's beautiful creation is beyond words.  All except for that freak tree root pictured above.  I'm pretty sure that wasn't of God.

Thank you, Lord, for this good day...

Saturday, October 30, 2010

A Song...For When I'm Afraid.

I get a little scared from time to time...ya know, with all the changes that ms can throw at me?  Or how a phone call can come that stops my whole world for a moment?  While my health might change by the hour, or life by the minute, there's one thing that never changes.  And that gives me comfort:-)

MS...You Really Do Care:-)

It's really something how, over the past couple of weeks or so, I've wondered where ms has been.  I've missed it tremendously!  I've longed for its return!  Okay, no.  None of those things are true.  Not even a little.

I've been fighting to keep my stress level at a low roar, because I've not wanted to wake ms.  But even the thought of, "I need to calm down, or I'll start feeling like crap" is stressful.  So I went for groceries.  Not to relieve stress, but to have more to eat than a roll of toilet paper. 

I found myself zoning in and out of retro'ing, which was triggered when I spotted a box of Sugar Daddy candies!  And just like that, I was taking mental time travels.  I landed somewhere around 1978, when I'd stand on the front of the grocery cart as Mom pushed, jumping off to grab my 2 cans of Hawaiian Punch:-)  What a beautiful mental vacation it was.  In 1978, I didn't have bills to pay, or...more accurately, not be able to pay.  I had a healthy Mommom - not phone calls from the neurosurgeons or nursing facility managers, giving me bad news.  I didn't have sickness and fatigue.  What's that on the bottom shelf?  Green Hawaiian Punch?  Orange?  In plastic containers?  WTH?  Just like that, back in 2010. 

I totally rocked the little duplex cart like I always do.  As I walked my prized score down Victory Lane, quite proud of how much I was able to stack and stuff into my little cart, I battled the overwhelming urge to give a "prom queen waive" to the other customers.  You know, "elbow - elbow - wrist - wrist - wrist".  I'll tell you who I impress.  The male customers.  Men LOVE to stack and situate and stuff things into carts.  I've even received compliments.  Mmm hmm.

I proudly walked out of the store and toward my parking area and breathed deeply.  Real life was back, but I was counting blessings.  I had a week's worth of groceries, and that's a blessing.  I was going home to my kids, and they're a blessing.  I was going home, and a home is a blessing:-)  But as I was counting blessings, I couldn't find my car.  I stood for a few minutes, retracing my steps.  Surely, I parked in this section.  I always do.  It's a compensation method I've been using for years, because I used to lose my car all the time.  I stared out across the entire lot.  Heeeeeere, my car...  Nothing.  It's really not out there.  It's not anywhere.  Oh no.  At some time during my trip to 1978, someone took my car?  How can that be?  I began to tear up a little, but then I thought, "Wait.  If someone took it and it doesn't turn up, no more car payment!"  I went into my purse for my phone so I could call my Mom to come pick us up.  "Us" being me and my groceries.  On top of my phone was an unfamiliar key ring?  What the?  Ooooooh.  That's right.  I haven't had my car in a week.  Because it's a mechanical hot mess and I don't have the money to repair it.  So it's sitting.  I'm driving Mommom's low-to-the-ground, convertible sporty car.  And there it is.  Literally right in front of me.  Thanks, ms!  I always appreciate the cognitive flatulence!

I had to carefully restack everything from my cart into her much-smaller-than-mine car.  Bending, twisting, neck turning, restacking.  I was as flexible as the Tin Man.  Creeeeak, griiiiind, creeeeeak.  Got it all in!  And then the soreness began. 

As I was driving home :::bz:::

Ugh. Vibrations are so annoying. Location? Pelvis. Yes. Pelvis. I turned my head to look for oncoming traffic and felt it more noticeably. :::bzzzzz:::

By the time I got home, it was constant. And strong. And pelvic. :::BZZZZZZZZZZZZZZZZZZZZ:::

See, this is why ms amuses me.  People who share of their vibrations openly express frustration and hatred toward them.  "I can't stand this vibration in my leg!"...or back...or arm.  Either I'm the only one, or others are too embarrassed to share that their vibrations occur in their torso, lower abdomen, or pelvic areas.  I'm not embarrassed, on account of...I don't choose where they happen, ms does.  How can I be sad about life when my body is going BZZZZZZ?  Simply stated, I can't.  Aw ms.  You really do care for me:-)


Saturday, October 23, 2010

I Know I'm Getting Older...

There are several things I'm noticing about myself.  And these things tell me?  I'm getting older.  I don't mean the 6 week hair coloring schedule...which should really be 4 weeks, but I can't afford it.  I mean real signs.

Last night, I woke up with chills.  Again.  My Wondertwin Powers have morphed from about 2yrs worth of "monthly migraines" 6 months of "monthly wake up feeling like I'm having heart attacks" the past 2 months of "monthly wake up freezing to deaths".  I've worn my husband's sweatshirt, old sweatpants, and work socks to bed.  I keep a large, fleece blanket next to the bed, in case my arctic wear doesn't do the trick.  Like monthly clockwork, I woke up around 3am with chills so vibrant that my teeth were chattering.  Even the 2 fleece blankets weren't enough.  Even the work socks didn't contain it.  So I'm left to long until I hit the hot flashes?

I've always looked forward to the start of each day.  My joy could be attributed to coffee, which sure, I still enjoy quite a bit of!  But lately?  It's Bayer baby aspirin.  Orange chewable.  Ever since the one episode of fierce "monthly wake up like I'm having a heart attack" symptoms and resulting hospitalization, I take one a day.  But sometimes, I forget if I actually took one or not.  So I take another.  Or maybe it was the first one.  I'm really not certain.  What have I become? 

Today is a beautiful day.  The fall leaves are radiant!  The sun is shining!  The air smells like fall!  I noticed all of that as I was hanging towels out on the line.  Like older folks do.

After hanging the towels, I considered going out for a walk and having some prayer time.  Instead?  I went to sleep.  For another 4 hours.  With the electric fireplace on high.  The house was already at 70 degrees.

I forgot I haven't shaved my legs lately, on account of it's not spring/summer anymore.  Yet another thing I like about fall.  Not having to shave bi-daily.  How was I reminded of this detail?  My legs are itching.  Yep.  Time to shave.  My grandmother told me months ago that I'd get to the point where I really wouldn't care about shaving.  I'm not there yet, but can see how that might happen.

I took my daughter and her classmates up to a birthday party.  It was 45 minutes away.  Four 12yr olds and my 11yr old son.  My kids sat in the 3rd row of seats.  Her classmates were in the passenger's seat and the back 2.  And the classmates didn't stop talking.  For all 45 minutes.  "I want an Ipod!"..."I already have that, I want and Ipad"..."I have a Droid, but I got it wet, so my Dad's getting me the new Droid!"..."yeah but the new Iphone is better..."...all the while, texting.  Texting on phones more expensive than mine.  "Oooooh you have a tv in your car!".  Me, silent.  Because what I wanted to tell them was...I haven't used it since 2006 when we drove 15hrs one way to St. Louis.  In fact, I'm not sure I recall how to make it work.  I'm sorry, but I'm old.  I don't believe in having to entertain you every moment your eyes are open.  How 'bout you look out the window?  That's what I had to do when I was your age.  I didn't have a cell phone, because they weren't made yet.  And there were no tv's in cars unless someone had stolen one and threw it in the trunk.  Or maybe bought one, I guess it didn't always have to be stolen.  Heck, our tv didn't even have a remote.  I was the remote, as well as the rabbit ear antenna fixer.  Dad would say, "right there!  Right there!" 

Anyway, I looked in the rearview mirror at my kids.  Peaceful little smiles, looking out the very back windows at the beautiful fall colors and blue sky.  Totally.  Quiet.  They don't have cell phones, or I-whatevers.  Sometimes I wonder if they feel like they're missing out.  Other times I don't really care, because it's all just too overwhelming for me.  I'm old now, remember?

Lastly?  Cats.  Four of them.  Laying on my computer desk and next to my chair as I type.  My husband calls me "Cat Lady".  Between the cats following me all about and the nighttime arctic attire?  I'll betcha he's feelin' like a real lucky fella!

All the while, ms is saying, "see that?  It's not always all my fault..."  My apologies, ms:-)

Friday, October 22, 2010

I Need A Code Shirt. Or Hat.

I think I covered "invisible symptoms" before, right?  Like how I feel more than blessed that you can't see how I feel?  But yet...sometimes I wish you could see how I feel?  There are stati on Facebook all the time about this or that group of folks don't want a cure, they want acceptance.  Well I'd like both.  A cure and acceptance.  But at this point?  I'll just take the acceptance.  So I got to thinking, after talking with my boss tonight....we (ms'ers) need a code shirt.  Or something.

Because if I were using a walking aid, no one would expect me to lift, drag, and arrange a heavy 10'x4' folding mat, an awkward 8'x4' mat, and a smaller and much more easily managed mat.  By myself.  But weakness and fatigue can't be seen.  No one would expect me to vacuum my classroom.  Because they'd understand that I don't vacuum my house.  My kids know it's their job, because they've grown up watching all that is me.  All I have to say is, "hey guys, it's lookin' like the house needs..." and they say, "we got it, Mommy."  My Lord, thank You for them:-)

Also what folks can't see?  A sizeable serving of emotional lability.  Though can you classify it as such if it's essentially a sad situation that you've not allowed yourself to feel, and so it comes rushing forward like a flood?  Well, I'm blaming ms.  Because clearly...I'm always quite in control of my emotions.  The thing about emotional lability's exhausting.  I was exhausted when I woke up this morning, then came the EL.  I'm at the point where my eyes burn.  I'm stupid tired, which is the highest form of tired.  What better time to compose a blog post?

People can't understand what they don't see.  I appear lazy.  Or crabby.  Or worn out.  Wait.  That one's true.  Maybe even the last 2.  But definitely not the first one.

If they could only understand the effort it takes me to do a simple thing, like get myself dressed and out the door.  Or to read with this left eye that still has not bounced back to full font view.  Or to try to maintain a pleasant and patient demeanor when I'm feeling nerve pain from my ear to my cheek.  Face cheek, not the other kind of cheek:-)  Or to experience a bout of crying, interrupted by laughter when nothing is funny...then have an immediate craving for sleep.  If they could understand, maybe they would reach out to me and say, "is there anything I can do to help you?" rather than arguing with me about something stupid, which would ordinarily make me angry.  The trouble being, getting angry requires energy I don't have.  Sorry!  You'll have to choose another day to argue with me.  I'm runnin' on empty...and Dunkin'...which doesn't seem to be working as of late.

So anyway, I'm thinking we need code shirts.  Here are some ideas:

"Today I Do Not Feel Well.  Please Be Nice To Me."
"Today I Am Full of Hatred.  Please Stay Back 500yds."
"Today I Am Crying For No Reason.  Please Walk Away.  Slowly."

And if I'm not donning one of these delightful tees, then you can expect me to be the whirlwind I usually am.  Kay?

It's hard when you don't want to play the ms card, yet it's sometimes just the simple reality.  Keyword:  Sometimes.  It's not every day or even most days.  But on those few days?  Yeah.  I want a t-shirt. 

I took a picture of the sky today, because I think of God every time I look to it.  There was something in today's sky that assured me God knows exactly how I'm feeling, and He's got it covered.  I still need the t-shirt, but only for everyone else:-) 

Tuesday, October 19, 2010

My Inner Brat

I'm compassionate and nurturing, really I am.  My heart is usually always in a place to reach out, to empathize, to support.  But I do have an Inner Brat.  I dislike my Inner Brat.  I got to thinking that, if I reveal it, maybe it would leave me.  Either that, or it would overtake me.  That's what it did today.

My Inner Brat dislikes when someone complains about the things I deal with on a daily basis.  Like how my husband has carpal tunnel and it was acting up.  Here's how not to be a loving wife...

Husband:  "I really don't know what to do, my wrist is killing me"
Me: "is it hurting that bad?"
Husband:  "no, it's just that these 3 fingers (gently rubbing other hand over dead fingers) feel like they're asleep"
Me:  "well, try a contrast bath...take some ibuprofen...maybe it'll help."
Inner Brat:  "I'm trying to stay quiet here..."
Husband, after coming downstairs from bed 4x:  "Oh good, I found Biofreeze.  I can't sleep with this, it's really bothering me.  Should I put it on my wrist, my elbow, or my neck?"
Inner Brat:  "when will people realize you're not a doctor, you're just a biller?  Tell him to put it on his butt..."
Me:  "if it's hurting that bad, run up to the ER and get something for the pain."
Husband:  "it's not the pain, it's just that these pins and needles in my fingers are killing me!"
Inner Brat, flailing arm high:  "oh please...PLEASE call on me!  Ooooooh!  Me me me me!"
Me:  "Biofreeze isn't going to bring the feeling back into your fingers, hon."
Husband, giving me his sad eyes:  "Well, I mean, I can put it on don't have to..."  yet holding the packet out to me.

Wondertwin Powers...activate!  Form of...Inner Brat!!!

Me, visibly annoyed:  "okay, that's good.  I mean, I'm trying to read here.  I deal with that sort of stuff on a daily basis.  Ya know?"
Husband:  "I'm not complaining or anything, it's just really annoying."
Me:  "yeah, I know it is."

That was AWFUL of me.  This is a man who drove to Taco Bell at 1am on countless occasions to score me pregnancy grub.  The man who stood behind me, held me tightly as we overlooked the lake in Ohio on a trip to the Cleveland Clinic for my 2nd opinion...and he didn't throw me in.  I can't be sympathetic to his numb and tingly fingers?  I dislike you, Inner Brat.  You = bad. 

So I'm going to go offer to put Biofreeze on his wrist.  Not his butt.  Because NO, Inner Brat!  I will not let you be the boss of me!  And I'll also apologize for acting as if there's only one person allowed in this household with nerve inflammation and paresthesia.  Though I wish it was just me.  That'd be so much easier.  Hey, maybe I could put Biofreeze on my head!  What could happen?  Hmm...

Friday, October 15, 2010

My Running Career Is...Over?

Yes, you heard it first.  My running career just may be over.  Well, I was told it should be over.  And that it never should've begun.  Whatever...

I hadn't been feeling well.  The back of my neck felt as if it was filled with warm marshmallows and my lower back was aching.  I could feel that my body was in a state of inflammation, one which the usual anti-inflammatory foods I ingest in large proportions just wouldn't touch.  So I bit the bullet and scheduled a session with my cranial sacral therapist. 

I am a HUGE fan of cranial sacral work when done by this therapist.  There are several schools of thought where c/s is concerned, and I respond immediately to this particular treatment as delivered by this particular therapist.  I drive nearly an hour to these appointments, but they are worth every mile...and every penny.

It's always great to hear, as he's getting a baseline for what's happening within my body...

Him, after assessment:  "okay, so what did you do to yourself?" 
Me, trying to see just how good he is:  "I dunno, what?" 
Him, proving just how good he is:  "well, you've got this tightness here in the occiput that originates riiiiiiight (finger at my right knee)."
Me:  "well, now that I think about it...I recently took up running.  And I..."
Him, interrupting:  "you what?"
Me:  "ya know, running.  I decided to run."
Him:  "oooooookay?  Have you tried walking?"
Me:  "yeah, but my friends run."
Him, not listening to me:  "how about swimming...swimming is a great workout and there's no impact."
Me:  "I always wanted to try that, but my friends run and I wanted to run with them."

(yes, that space was left blank, because he did not respond.  No fair to use "pretend you're sleeping" on me in a conversation!)

After 75 very exhausting minutes of work (for my therapist), my body felt completely at peace.  That might sound a little funny.  My body is kind of like, feisty junior high girls.  Always itchin' to fight, having to be held back and restrained, but breaking through once in awhile to throw down!  When you think about it, that's probably a fair assessment where autoimmune disease is concerned.

So my session was euphoric like always and I got to see some awesome folks...because I so love everyone at this center.  I thought about his advice the whole way home.  Maybe taking up running so that I could exercise with my friends wasn't quite the best strategy.  Maybe I'll just be the "call her whenever you need her" friend, the "have a piece of cheesecake" friend, or the "let's meet up for coffee" friend.  Truth be told, I never felt God's presence when I ran like my friends said.  In fact, there was nothing heavenly about how I felt while running.  Heavenly exercise for me would be, oh I dunno, none?

I so need the cheesecake...