Tuesday, May 31, 2011

Succeeding With MS

For anyone with a facebook account, I highly recommend the page "Succeeding With Multiple Sclerosis".  Its motto?  "Keeping it real, but keeping it positive".  Of course, I was taken with the name.

I really try to maintain a positive attitude on a daily basis, even when I feel awful.  Not because I'm some sort of amazing person.  I'm not.  The only thing that has gotten me this far and will continue to do so is my faith.  Because if you get technical, I'm actually an "MS Failure". 

Only a very select few fail the meds.  Only a very select few can't stomach the handfuls of supplements.  Heck, I even became intolerant to chiropractic adjustments, which would result in a few days of leg weakness and paraesthesia.  Those were all the recommendations that turned into retractions.  I remember sitting in front of my doctor, visit after visit, hearing the word "discontinue", and the ensuing 45-minute drives home in tears.  I felt a little like my number was called for the raffle and the prize was a big helping of 'freakshow'!  So I went rogue.  I cut things out of my diet that I figured out were not agreeing with me, like gluten and alcohol.  I try to eat right (sorta) and make sure to grab a couple handfuls of peanuts each day and solid helpings of dark berries...stuff like that.  But pretty much?  MS taught me how in control I'm...not.  That was actually a beautiful lesson for me to learn. 

Right now, I can say that I'm working full-time and am able to volunteer in different capacities.  I'm more than fully aware how all of that could change at the drop of a hat.  I think of that concept as Reality Road.  If I stay on that too long, I can easily get sucked into Circumstance World, which is a very dark and scary place no one should stay in for any length of time.  Essentially, I can't spend time or energy worrying about whether or not that day will come.  I just need to trust that the Lord will carry me through, no matter what.  I do trust that.  Completely.  Even during short stays in Circumstance World:-)

So in the meantime, I just focus on being the best wife, mother, daughter, granddaughter, cousin, friend, and servant I can be.  That's what success looks like to me.  Even through the big, black floaters in my left eye;-)

Thursday, May 26, 2011

Randomness = Happiness!

I love people with ms.  I'm not happy to say that I have several friends with it, because I wish more than anything that they didn't.  That I didn't.  But you know what?  If we have to live with this condition, at least we do so in unity!

The following re-enactment took place on facebook a moment ago:

MG status:  ...Looking forward to the banquet tomorrow night, and then a weekend away at the mountains! First family vacation (albeit short) in over 2 yrs!
Some Guy: Where you gonna be in the mountains? We'll be up there too.
MG:  (gives him the location). Where will you be?
Friend of Mine w/MS (Linda):  Not to change the subject but, is there dress down day tomorrow?
MG:  yes, it is a dress down day tomorrow!

:::crickets chirp...then several follow up posts celebrating MG's mini-vacay, and then me...holding stomach in laughter:::

Tina:  I'm sorry, I'm sitting here cracking up. "I'm going on vacation!" and the person with MS says, "is it dress down day?" I feel so at home when Linda posts...because I was LITERALLY thinking the same thing...

Yeah.  MS is like that, right?  Like those "what does MS = to you" things?  MS = Random.

Random thoughts that require me to actively focus on your conversation, because I'm thinking about my checkbook, how many "miles to empty" I saw when I shut my car off, someone left 2mm of milk in the jug and put it back in the fridge, feels like something's crawling on my face, which eye should I be looking into when I'm talking to people...I wonder if they have a preference, I think the Phillies are on tonight, the color blue, had to be my husband who put that milk jug back empty, cheesecake, I could go for a coolatta, "I got the powah!" (I sing 80s songs in my head whilst thinking)...

I've been living with ms for about 12yrs now.  As I reflect on our time together, I can't help but notice a trend.  I'm more "random" than "planned".  In fact, I barely plan anything, because how can I?  If I felt the same way two days in a row, maybe.  It's like that theory people joke about that a man will begin to resemble his dog.  Totally true in my home, btw.  My husband and our basset hound?  Well.  You be the judge:


Anyway, :::focus, focus::: I think I'm meeting ms in the middle and becoming just as random as it is. If you can't beat 'em, join 'em ;-)

As an aside, someone snapped this photo of my friend, Linda, and I at a school function:

We're not sure what we were laughing at, probably because it was something different for each of us.  We just know that, whatever it was...it was FUNNY!  I'm way off track again.

Be well, friends!

Thursday, May 19, 2011

Anxiety: Love Ya Like A Heart Attack...

Anxiety and I go way back.  To early childhood, actually.  Anxiety is that old friend whom I don't wish to see, like the person you notice in the distance and quickly duck into the closest aisle of the store...which usually ends up being one with uncool products like Raid or Preparation H or tin foil.


Anyway, this time Anxiety presented itself in different clothing.  It just sort of happened upon me, uninvited.  I'm not worried about anything specific.  In fact, I hesitate to coin it "anxiety".  But...I have a heightened sense of hearing, even more than that which I've previously compared to The Bionic Woman.  I'm walking around in a constant state of agitation.  I've dug at and picked the skin all around the nail beds of my fingers.  Try as I may, I cannot stop.  My right forearm and right thigh feel sunburned.  If someone could please find the brat that's running the sandpaper across my left cheek and around my ribcage, bring him to me.  It feels as if my right foot is covered in creepie crawlies, but alas...it is not.  Over the past week and a few days, I've not slept more than 4-5hrs/night, and no more than 2hrs in succession.  But I can handle all of that, as annoying as it is.  What I can't handle?  Is the fact that my mind has decided to exit stage left.

You know how each day is chock full of situations flying at you, things you have to quickly adjust to, plans you made that you have to change on a dime, and the barrage of interruptions that carelessly dive into your overall flow?  My mind just threw it all up and walked away in disgust.  If you've ever felt as if your head was nauseous, then you've been where I am.

What annoys me right now?  Everything.  Planning and re-planning.  People messing up my flow.  My flow.  And people.  The noise at work, the sound of my husband's spoon clanging at the bottom of his cereal bowl and subsequent slurrrrrp of the milk, the tapping of the keys as I type, and the "ding ding" of my car telling me I'm low on gas.  Does it not think I know this?  I'm old enough to remember the days when you still had to think to drive a car.  Now they make them so they park themselves and even sense when you're not paying attention.  Even that annoys me.  Friends, you can keep it.  I'm too much of a control freak to let my car so much as think about driving itself.  If I attempt to parallel park and whack a car, it'll be because I did so, darn it!  Wait.  This is clearly the lack of sleep talking.  Sadly, the gas gauge dinger has gotten the best of me.  I'm at the point where the mere thought of stopping for, pumping, and paying for my gas is completely overwhelming to me.  Why can't it just run on coffee, as I do?  Nevermind.  That would be more expensive than it already is.

I'm not sure how long this state of mental spew will last, but what I'm positive of is...it's all temporary.  I had an awesome conversation the other morning with a dear friend over coffee.  How perfect is that scenario?  I digress.  She was sharing a bit about a bible study she's doing on God's love and how, if we even had the smallest inkling of how much we are loved, we couldn't help but walk around in a constant state of joy.  Perfectly timed discussion for my current cerebral nausea.  That reminder helps me attempt to combat these false feelings of agitation with some good, ol' fashioned truth. 

Funny, as I'm trying to think of a catchy sentence to close with, the song "Joyfully" just came on the radio.  Alright, Kari Jobe.  I'll just attach your song and call it a night.  Thanks for your perfect timing.  This is why I friended you on facebook, just sayin'... 

Saturday, May 14, 2011

Wide "Ugh"wake..."Ugh"gain.

What sense does it make to have to drag myself through the daylight hours, where I find myself counting down the hours until I'm horizontally situated in the confines of my nest of blankets...only to NOT be able to sleep when the time is right?

I sit up late at night, wired for sound, and think of all the things I have to do tomorrow.  Tomorrow turns into today.  I begin to crave coffee.  I know I shouldn't drink that in the middle of the night so I deny myself.  I watch my cats recreate their favorite show, "Wipeout".  They leap and sprint about the living room.  The other night, I found myself taking on the role of announcer.  THAT is rock bottom.

I looked for help online and here are the gems I found:

  • Go to bed when you're tired.  (um, how is 10am-3pm?  Oh right...I'm supposed to be up and working like the rest of the civilized world!)
  • Prepare yourself for bed by wearing comfortable nightclothes, adjust your bed pillows in a comfortable position, turn off the lights, adjust the temperature in your bedroom, and position yourself comfortably in your bed. (I build myself a nest of soft blankets atop my fancy bed sheets each night.  It doesn't work, but thanks for your time.)
  • If you do not fall asleep after 10-15 minutes -- get up! Do not lie in bed and watch the clock. (how will I know that 10-15mins has gone by if I don't look at the clock?  C'mon.  Think!)
  • Remember your bed is only for sleeping. (..............)
  • Set your alarm to wake up at the same time every day, even on days when you're off work and on the weekends. (and they say I'M the one with holes in MY head?)

 Wait!  Was that a yawn?  No, nevermind.  False alarm.  "Ugh"gain.

Sunday, May 8, 2011

The MS Waddle

That says it all, right? 

I figure it's time to scavenge-and-drop the $50 copay to visit a physical therapist who can tell me how in the world to get some flexibility back into these legs.  I'm having a hard time walking for exercise, or even just walking for transportation, because whatever those muscles are that join your rear end to your upper legs?  Yeah, they're not working properly.  I'm totally in touch with my inner penguin.  I even get a little sore while sitting.  And that's just not right. 

I have plenty of comments for what my walking must look like to innocent bystanders, but I will keep those to myself.

The stiffness and pain have caused me to be, um...slightly edgy and quick tempered with people who expect me to walk quickly, or who get on my case about using the little cart to purchase a case of water and a large bag of cat litter.  Because of the latter, I cannot return to my usual grocery store anytime soon.  The ongoing battle of "me vs snarky bagger man" reached its tipping point and let's just say - between the pain I was in all day, having just come off a full shift and volunteering a couple hours immediately following, equating to a 10+hr work day - it was the wrong night for snarky customer service. 

I'm sure the pt exercises for this are both interesting and flattering at the same time.  I continue to be in awe of the envy men everywhere must hold for my husband.  A wife who wears winter socks around the house all year 'round, bruises cascading her right side, and now...waddling.  Two words:  That's hot!  Oh what a lucky, lucky man he truly is ;-)

Friday, May 6, 2011

What's In A Car Magnet

Yesterday, I was a runner.  Oh I've already anticipated your questions and have answers prepared.

Flash Mob:  "We're shocked!  How far did you run, Tina!?!"

me:  Well...I don't like to brag or anything, but...a half marathon.

FM:  "That's hard to believe!  However did you DO such a thing!?!"

me:  Hard to believe?  I've even got the car magnet! See?  And those say it all...

FM:  "But Tina!  That's not your car!"

me:  ugh.  You got me...

See, my son's running coach needed to borrow my car to cart additional runners to practice.  When I went out to grab my 3 O'clock Coffee, capitalized because it should be, I totally worked the magnet.  As I was in a state of euphoria, sipping pleasantly on my coolatta, I noticed a rather thin woman with exercise garb, staring in at me.  I realized I had the 13.1 magnet on the car, and that this could be the reason for her look of "what the?".  I gave her a head nod, a slight dip of my coolatta cup, and a smile as if to say, "yes.  That just happened."  Despite having pricklies and zingers in both shins, I felt like a runner.  Why?  Because the car magnet said so.  I felt as if I was fooling people;-)  Because really, when you have invisible symptoms, isn't that what life looks like?  Trying to fool people each day into thinking you're feeling fabulous?  Eh, maybe it's just me. 

And then my car was returned.

Ahhhh home sweet home.  There's something very comforting about my car.  The seat that's memory set to "short girl".  And a hatch that says, "I am a hockey mom.  I drive a Chrysler.  And yes...I have ms."  I was at home in my "short girl" seat and noticed that, hey, my legs aren't quite so uncomfortable in my own car! 

Must be the magnet.