Monday, December 17, 2012

2012 - A Year In Review


Hey...did you guys know that this year is almost over?

No, seriously.

I know, right?

I kept wondering why people on fb were summarizing 365 days into witty, paragraphical stati. And then I wrote today's date.  Proverbial 2x4?  Meet head.

Because I can't quite remember all of 2012 (thanks for that, ms+age+perimenopause...a trifecta that I unaffectionately refer to as "The Carousel of Hormonal Hell"), I cheated and reviewed prior blog posts.  Here's what I found:

In 2012...

My husband suffered the devastation of a cold. My eyes threw temper tantrums. My ear decided it didn't feel like hearing. Grocery shopping continued to be an athletic contest. I had regular visits from my ol' friends, anxiety and intermittent depression. I never know if ms is to blame, or if it's yet another byproduct of the Carousel. And speaking of...perimenopause stunk for the however-many-eth year in a row.  It seems as if 'waking-up-at-2am-to-find-my-heart-on-the-ceiling' has morphed into 'can't-find-my-keys-that-are-in-my-hand' and 'can't-find-my-sunglasses-that-are-on-my-head'.

Tell me, menopausal/ms-having friends.  Does this get better once I graduate perimenopause and move into all out menopause?  Come on.  Give me something to look forward to.  And tell me there's a little more glory in it for me than simply graduating from Always to Depends.

Meh. Either way...

Spousal colds, temperamental eyes and ears, and ol' friends aside, 2012 was a year of change:

- I lost a job.  BUT, I got a new one!
- I don't have the opportunity to serve students any longer (and I don't think I'll ever stop missing that). BUT, I do have the opportunity to serve in different ways!
- I didn't get to stay home this summer with my kids, turn 50 shades of tan, and walk every day.  BUT, I didn't have to go to the dermatologist AND I got to participate in the MS Challenge Walk!

It's all cause for humble reflection.

Though this crazy life and even more crazy disease throw changes my way, the Lord's promises remain the same. He makes all things work together for my good. Not just the preferable things.

All. Things.

Though I can't really find the good in perimenopause, but...maybe if we can help each other laugh at it?  Maybe THAT'S the good?  Rhetorical...


Wishing you all a most blessed 2013!  



Thursday, November 22, 2012

When MS Gets Agitated


The very word says it all, doesn't it?

"Agitate". Could be the phonemic structure of the 'dj' sound followed by the crisp 't' sounds that make a slight grinding sensation on some tiny nerve in my head. Like a nail file. Or something.

Over the past few weeks, I really don't like the way I've been 'feeling'. It's nothing that I'd traditionally be able to pinpoint, because I've run the full inventory. I can see just fine, aside from a slightly annoying nystagmus when reading tiny font. Mobility's good. Hearing's on point. Cognition is solid. Even the ol' bladder is holding it's own - pun intended. I give thanks to the Lord each day for these blessings and take none for granted.

So what's the problem? Well, it's taken a few weeks and at least 3 combustions for me to finally figure it out:  Agitation.

A new source of noise has been added to my work environment. It isn't a loud or shrill noise. You know what it reminds me of? A particular sound an Occupational Therapist I worked with used in small group therapy sessions for children with neurological differences. She would play a track of a man's monotone voice, which spoke a series of words that did not form sentences, at low to mid-range volume. She would then ask the children to play games together, answer educational questions, etc. They would become highly agitated...not by the games or her questions, but by trying to function through the nonsensical recording she used as background noise. Her answer to my question of what the goal of her treatment was in using this method? "To help them overcome their agitation in social situations." To which I said, "in what social situation is there an intermittent, monotone, nonsensical, sound occurring while you're trying to complete a task?" She said, "you'd be surprised!" We had a good laugh over it, and I have to say she was totally right...I am surprised.

I am mentally fatigued by the time I get home, not due to the work I perform, but due to this noise. By the end of the day, I'm ready to combust. By the end of the week? I combust. Sometimes, it's happened in front of others. And it makes me feel absolutely awful. I repeat: Absolutely. Awful.

I don't want to be this person. For years prior, I've been referred to as the 'most patient person', possessing that 'of a saint'. Where'd that go, for goodness sake? Because by Wednesday, the 'saint' has left the building.

But you know how we roll - those of us with super cool neurology - we compensate! So that's what I'm going to focus on. Compensating. Coping. Not combusting. Because people can't possibly understand the mechanisms behind a combustion...and it just makes me look like...a bad person. I'm not that. I don't want to be that. Ever. I want to reflect Christ in all I do. I consciously strive toward that goal each day. And I can't be like Him if I'm ready to slam my face into my monitor by 1pm.

Note to self:  Slamming face into monitor  portraying the woman I am in Christ.

I think I'm going to try a sound machine with white noise. And if that doesn't work...

I'll put on a face mask and go for it?


Tuesday, November 6, 2012

Taking MS to The Voting Booth


Election Day!  What a beautiful privilege 'the right to vote' is.

Tonight, I decided to take my son along with me to experience it in all its glory. You see, most kids his age would give anything to meet their favorite athlete or musician. My son? Wants to meet our local District Attorney, our State Representative, and folks in Washington. He's all government - all the time. He was beyond thrilled as he excitedly perched himself in the passenger's seat and stared ahead in wonder as we turned the corner and saw...this:


Initially, I joked that it appeared as if we were in a parade, but I was wrong. Parades MOVE. This? Did not. My bladder called. I didn't answer...

About half an hour later, my son and I traded 'sitting in the car' for 'standing out in the cold parking lot'. Emphasis on 'cold' and 'standing' as in 'standing completely still'. MS decided to show up to the party.

Fantastic.



Summer is not nearly as difficult for me as winter (or super cold autumn). When I get cold - cold enough to shiver - I begin to vibrate. If I dare to look down at the feet I eventually cannot feel, I get that uncomfortable cascade of electrical short circuitry through my legs and ankles. So there I was...standing in the cold parking lot, vibrating-but-not-feeling, praying to God that I would not trip or fall in the cattle chute-esque line, again ignoring the call from my bladder, asking God to help me *not* pee in line ('cause I keep it classy!) when, all of the sudden...

My son took my hand and said, "wow...you're freezin', Mom! Let me have your hands. I'm warm."

Ever since he was little, he just knew. And, though he's now a teenager...he still knows.

Pressing the buttons was fun when my finger decided to twitch each time I extended it. Thankfully, the buttons were far apart and I simply bent my finger and pressed the selections with my knuckle.

I'm home and comfortably nestled under blankets. I'm still vibrating, still keeping my head nice and level so as not to incur unwanted electricity, and still regaining feeling in my feet...but I cast my vote with my son at my side.

Add this night to the list of things that MS can't take away.

- my God
- my faith
- the love of my family
- experiencing the genuine care in my son's face as he warmed my hands


...rock it out:

 

Saturday, October 20, 2012

I = MS Challenge Walker



You're lookin' at a woman who has participated in the 2012 MS Challenge Walk!!!

Wait...



Okay, now you've seen her.

There she is (goodness gracious, let me stop speaking in the 3rd person) all bundled up in 4 layers of top clothing (it was 27 degrees at the start), a baseball hat, and 'credentials' that were given to me under the guise of 'this serves as your meal ticket'. My name and address were on it, as well as an emergency contact. I was also required to have photo ID and my health insurance card on my person. Meal ticket credentials? No. Information that helps someone to notify my family that I'm in a trauma center - and who will be covering the bill for my care? More like it.

Oh, and those white wires aren't attached to any sort of cardiac monitor or anything...those were from my iHat :-)

The scenery was stunning. While I was the only 'individual' walker, meaning I didn't have a team, I knew full well Who was walking with me the entire time.






There was a point at which I was having a tough time of things. Basically, my foot no longer wished to move in an upward fashion. I kept scuffing my toes as I meandered along, walking more like Mr. Heavyfoot with each step. A kind fellow walker had suggested I use a stick. A stick? I've never used any sort of mobility aid before, but my life-long mantra has always been...

I'll try anything...twice!



(historically, that mantra has gotten me into a loooooooooot of trouble...)

I found new freedom in my walkin' stick! Until I came to the point of the path where the 'shoulder' was...not.  Because 'shoulder' provides ample space in which to pull a car over. 'Shoulder' gives you a comfortable place to walk. 'Shoulder' contains enough surface area in which to fall and not be smooshed by oncoming traffic. No no, friends. I had arrived at...'wrist':


'Wrist' meant that my walking stick was in the lane of 50mph traffic. And, if I switched hands so that stick was safe, my right foot wasn't. Choices.....

It wasn't that several of the wonderful volunteers didn't offer to give me a ride, because they did. But I needed to do this, because I had put my mind to it. I'm stubborn like that.

(historically, that mantra has ALSO gotten me into a looooooooooot of trouble...)

There was a point at which my body gave up. I became ill. I was afraid I may not be able to continue...but greater is He that is in me (insert smiley face emoticon with a tear). I made it to a rest stop, where the volunteers helped me to put my feet up, fed me protein bars, and kept a steady flow of gatorade coming my way. They talked with me about everything from the economy to sports to what ms looks like in my life. Eventually (like an hour or so later), my legs came back and I was able to continue on!  May God bless them for their warm hospitality...

It's those things which I'll remember most - the hospitable moments. The conversations with the volunteers in which we'd end up talking about God. That time I was asking God for help, because I knew I couldn't make it to the next rest stop without losing bladder control...and I couldn't feel my feet, because they were frozen. A woman came out of a restaurant and said, "honey! Do you need to use the bathroom or warm up? I have coffee on!"

...not kidding.

In fact, I could really summarize this entire experience as one big retreat with God. All those training walks? All those conversations with the Lord - both silent and aloud? All that physical pain and illness to push through? Drew me close and kept me near Him. 

It may have appeared to others as if I was walking as the only 'individual' participant, but I was there with a team. They were in my phone...and He was right next to me. There were times it was overwhelming. Times I felt like I really couldn't go on, but those text messages would come (love you, Debbie!) at just the right times, giving me the encouragement and scripture verses I needed to keep moving. 

And then I saw this:


But it still didn't mean I had it in the bag. 'Cause I couldn't feel this:



...which is why I took a picture of it for myself ;-)

It was the longest mile of my entire life. Seriously. And when I couldn't make sense of the fact that my legs were STILL moving, because I couldn't feel anything but numbness and pain (ms'ers understand that you can feel both at the same time...ha!), I saw the finish line up ahead:



...and then a particular song came on iHat, in perfect timing.  'Overcome' by Jeremy Camp.  And I cried. A lot. Let me rephrase that.

A. LOT.






Thank You, Lord, for walking with me. Thank you, Debbie, for 'walking' with me through every mile via cell phone. Thank you, family, friends, and church family for making this dream a possibility, and for your encouraging messages.

Most of all - many thanks to my sweetest, dearest husband, for picking me up from the event. No matter what circumstances have stood before us, between us, or ahead of us...he has supported me. I often joke that he got the raw end of that 'in sickness and in health' vow, but he insists he really doesn't feel that way. In fact, he hugged me and said - through equally sobby tears - "I'm so proud of you!"

Who's the most blessed woman ever?

Me.




Can't wait for 2013!!!

Saturday, September 8, 2012

There's No Crying In MS!

In fact, one of my biggest mantras has always been:

I won't cry over it, because it doesn't deserve my tears!

I'm talking about voluntary tears here, not the pseudobulbar kind ;-)

In any case, I went grocery shopping this week. While that, in itself, is enough to make any of us cry, I really haven't ever been brought to tears over it. This time was different.

MS has been toying around with my emotions again. I find myself constantly having to lift these thoughts and feelings up the Lord, asking Him to show me what is legit and what is not. This is the first week of school for my now-high-schooler and my in-the-middle-of-middle-schooler. My kids are growing up. I'm missing my previous students and coworkers. I'm also missing things I've never missed, like my kids' athletic events. I know, I know...99% of working moms are in this boat with me. It's just something I'll need to get used to and I will, but not before it's done hurting for a little. The saving grace is that I'm not hard-pressed to see my abundant blessings through these changes:-)

In any case, I was contemplating 'the meaning of it all' whilst hurrying through the store (wanted to get home to my kids) and overheated myself...because I happened to need nearly every item ever packaged for resale throughout the store on this particular grocery run. To top it off? The 35ct case of bottled water my husband wrote on the top of my list. In capitals. "WATER!!!"

WHAT. EVER. HONEY.

By the time I got to the checkout, I was dizzy, physically exhausted, and my eyesight was dancing around a la nystagmus. I loaded the contents of my cart onto the belt and nearly fell over from the 58 repetitions of 'down/up/down/up'. I caught myself by clutching onto the side of the counter and thought I pulled it off well, but the woman behind me noticed, which caused her to keep a close eye on me the rest of the transaction. From the sideways looks she gave, it was clear to me that she assumed I came to the store straight from happy hour.

As luck would have it, there was no bagger at the end of the line and I knew that I was in no shape to do it. I decided I needed to take control of the situation...I told the cashier..."I have MS. I need help. I need someone to bag up my stuff."

:::anyone who knows me? Knows how huge it was for me to ask for help:::

The woman behind me relaxed her eyes from the 'I can't believe this drunk woman is in front of me' to 'I want to help this woman' gaze. She offered to follow me out and put my things into my car, but I had already played my 'I Need Help' card for the day. I'm too prideful to play more than one, you see. I thanked her and told her how much I appreciated it, but I would be alright. I lied.

Made it to my car by resting the weight of my entire torso on the handle of my cart. I used my key-operated, automatic lift gate feature for the 1st time in years and gave thanks for my husband, who only allowed me to buy this car because of that feature. As I leaned on my car and cart, slowly hoisting bags to and fro, I began to feel sorry for myself.

WHAT???

Yeah, I did. And that totally allowed those ugly thoughts to come rushing forth. The tears started. And fell. But I still kept slowly placing bags in my car. Hiding behind my opened liftgate and darkened windows so that no one could see the insane, crying woman. I thought to myself, "ugh...I hate having ms! This sucks!!!" And the floodgates opened. I was 'ugly crying'. I knew it was time to take action...

I battled the tears with praises to the Lord. Stuff like: "thank You, Lord, for these groceries for which I am floating a check to pay for" and "thank You, Lord, for the family I am taking them home to" and "thank You for the home You enable us to keep" and "thank You for the job I have just come from" and "thank You for loving me the way You do".  For loving me the way He does.  Unconditionally. Through every moment of 'up', but especially through every moment of 'down'.

The tears eventually dried up. My shirt? Took a little while longer. But maybe 2 complete sobfests in 13yrs isn't so wrong, especially if I'm led to praise the Lord in the midst of them. Because come on, I think we can all agree that ms does suck.

But He is faithful. I thank Him for that :-)


Sunday, August 26, 2012

Breakin' Stuff...

I never mean to, but I break stuff.

A stapler. Plastic utensils. Eggs (casualty of untimely hand tremor). The handle from my washing machine. A button on my shirt. The clasp of my necklace. The wheel from the mower deck of my lawn tractor.

:::the what?::: 

This:


"See Deere go.  
Go Deere go! 
Uh oh. 
Deere hit rock. 
Bad rock, bad rock!"  (Dick and Jane called, they want their story back)

A girl who was feeling slightly "vertigo" should have "vertistopped" prior to climbing onto the tractor and taking it for a spin 'round the ol' yard.  Why?  'Cause she needed to look down to judge the distance between self and rock.  Vertigo doesn't like to look down. Rock won.

I was instantly embarrassed. My first thought? Get a picture, because my church family eagerly anticipates my lawn adventures and THIS most definitely qualifies.  My second thought, and I'm just going to come out and admit this, was:  "Can I fix this before he (husband) gets home?"

So I put the rock back:


After careful inspection, I noticed the wheel had been welded on, therefore erasing any chance of self-repair...so I stuffed it into my cupholder. 


I continued on, mowing sans mower deck support wheel, while entertaining several potential explanations against my husband's probable responses:

  • "I didn't see that rock" = 'why were you mowing if you couldn't see?' 
  • "I misjudged" = 'why were you mowing if you couldn't judge yourself in space?'
  • "I wasn't paying attention" = 'why weren't you paying attention while mowing?'
  • "it SO was not there!" = 'rocks don't move...did you take some old neurontin or something?  And if so, did you not learn your lesson the first time you mowed on neurontin?'

Truth was, I really didn't judge it properly. I mean, I saw it? But more in 'side view mirror' terminology.  And that looks like this:



But this story has a happy ending. I posted the pictures of my debacle on facebook in order to share a laugh with my friends. Within minutes, offers of help appeared. And before the sun went down, I had a repaired mower deck, freshly painted welds, and sharpened blades (woo!) snugly affixed upon the belly of my tractor. What did it cost me? Just a hug. And the hug was actually a gift to me.

The 'body of Christ' is a powerful thing and I thank God that I am just a tiny part of it. They say the words "one another" are mentioned over 50 times in the New Testament. 

I believe that :-)



Wednesday, August 22, 2012

A Letter To My Right Eye...

Dear Right Eye:

I feel as if you and I aren't quite seeing...you to me?

I thought we've typically had a strong relationship. It was always Left Eye and I who struggled. Like that time when I had a really tough time seeing with Left Eye?  And I lost color vision?  And it hurt really bad?  And once the dust settled, I acquired that little flock of black eye floaters that I affectionately refer to as "eye flies"?  Yeah. See, Left Eye and I? We've been through thick and thin, but we've settled our differences. The eye flies are kind of fun to watch when I'm bored. Not everyone can say they have 'built in entertainment'.

This recent turn of events troubles me, Right Eye. While the floating bubbles are an interesting shape with a slight hue of greenish blue on the outside and are more aesthetic than flies, the pain is something I could do without. Also something I could do without? The burning sensations. There shouldn't be pain where bubbles are involved. Just as 'hips don't lie', bubbles don't hurt. Seriously...

I don't mean to sound ungrateful. I'm thankful that you've allowed me to see clearly, albeit through tiny bubbles. This morning's sunrise was amazing, as were the many beautiful sights my Lord's skies displayed throughout the day. In return, I did my best to shield you behind sunglasses as a token of my deepest appreciation. I guess it's just that you're making it pretty difficult for me to work 8hrs/day on a computer screen with tiny letters and numbers...tiny letters and numbers that can't be enlarged...tiny letters and numbers approximately the size of the bubbles. And, because I'm working very hard to focus through the bubbles (and the pain and the burning), I'm exhausted. And my forehead hurts from squinting. And I'm pretty sure my boss thinks I'm ridiculous for dousing you with eye drops and using most of her tissues. And I'm ready for bed. And you're still burning. Still. Burning. Twisting. Squeezing. In my eye socket.

Hold on a minute.  Just as I finished that sentence, my son came to me to ask if I would read him a chapter from his book. Part of me wonders...could I exchange the reading for like, napping?  "Hey, bud!  Let's see how still we can lay!  Isn't this great?" Alas, I will shove the pain and optical inferno to the wayside.  He won't always want me to read with him, and I'll be darned if I allow you (or ms in any form) to stand in the way of my most important occupation: motherhood.

:::fighting the urge to swat at bubbles in vision:::

...at least he's plenty old enough to correct me when I end up on the wrong line and wrong word, on account of how I'll be reading with Left Eye and closing the flaming, twisting, ball of hate ;-)


Saturday, August 18, 2012

MS Challenge Walk - The Training Chronicles - "What Are You Thinking???"

That's what the 'voice' in my head said this morning.

"What are you thinking???  You can't do this!!!"

I woke with the mindset that I was going to hydrate the heck out of myself, throw on the FPS (Fantastically Purple Sneakers) and head out on another 6 mile attempt. But then, I took a glance at a reminder email from the NMSS that I've not registered for 'housing'. Housing is referring to a camp with - and I quote - RUSTIC cabins shared among 12-16 women. There are 2 toilets and 2 showers. Um? Here's a math equation for the masses:

Tina + 11-15 others + 2 toilets = Tina using the shower stall/area behind cabin/woods/middle of grassy field as a toilet.

(I went to college, people...I've never lost the ability to go wherever I can find) 

There is an alternative of a hotel. For $89. I don't think so.

Listen, I don't mean to grumble...I'm just a light-sleeping woman who needs ample rest, ample coffee, ample gatorade packets, and ample toilets. I'm trying to walk 30 miles for goodness sake! I'm nervous enough about the walk, much less adding the possibility of total exhaustion into the mix! Nevermind peeing in the woods...

And then it hit me. I probably can't do this. I'm not the strong, athletic, stamina-filled person I was pre-1999. I may still possess the mindset, but that could actually be working against me. I'm sometimes a little too stubborn for my own good ;-)

Just as I began to feel pretty defeated, something in me said: "this isn't about some 30mi walk...this is about the process."

The process? Go on, self. You have my attention.

Ooooh. Like how I've met new neighbors I wouldn't have known had I not be walking new roads? Noticed new scenery I never thought about while driving by in my car? Or was it how I stuck out like a sore thumb over in the new development on account of how my exercise outfit isn't tiny and cute and matching? Not that one? I've gone too far again? Sorry, self. I'm refocused:-) Yeah, those are great things, but you're right...the process is about how each walk is spent in conversation with the Lord. And how, lately, I've been having these mental 'replays' in which I'm specifically recalling the huge ways He has worked in my life. My heart is always uplifted. My mind is always focused on grace and mercy. I'm always overwhelmed with thankfulness. And sometimes, I even find myself with a few happy tears in my eyes:-)

The reality is...it doesn't matter if I'm physically able to walk 30 miles, or if some of that time is spent on a golf cart. It really is the process. The love of family and friends. The time spent with the Lord. When I'm walking with Him (even if 'walking' isn't meant in a literal sense), there is comfort and peace. No matter what.

Healer of my heart, walk with me...


(love how they tried to put lyrics to a Kim Walker-Smith song. Pssht! Kim sings from the heart! No time for adhering to lyrics! Putting this on my iHat. It's 15mins long. That'll get me at least 3/4ths of a mile...thank you, Kim!)

Tuesday, August 14, 2012

MS Challenge Walk - The Training Chronicles 6.0 - Walking In The Lord

I decided to take my MS Challenge Walk training to the next level after being inspired by a discussion with my boss.  The goal - 6 miles.

I had done 5 miles last weekend.  How hard could 6 be?  I figured...what could happen?  A lot, actually.  A lot could happen.

...by mile 4 - blurry left eye
...by mile 5 - stiff left thigh
...also at mile 5 - stiff left knee
...again at mile 5 - stiff left ankle

Seriously, left side?  Seriously?  

By mile 5.25 or so, the pain and stiffness was pretty unreal.  But that wasn't the worst of it.  Searing sensations over the outsides of my shins.  You know how, like, you go to a restaurant and they bring your fajita out on the sizzlie tray?  Yeah.  Like that.  I ran my hands over my legs to see if someone was really lighting them on fire, or if that was just furious nerve endings.  Rest assured - it was the latter.  Come on, fellow ms'ers...you know what it's like when you assume the crawling sensation is ms - and it turns out to be a tarantula.  Or, more realistically, an ant.  Same thing.  

:::and because I lack that thing that tells me to stop a physical activity that is bad for me:::

I continued on, mentally pushing through the fiery pain and stiffness - tripping, clomping, sliding my left foot and overcompensating with the right.  I began praying for the ability to make it home, and with that prayer came overwhelming memories of yesteryear.  

Memories of significantly impaired sight, colossal falls, and poor mobility.  More memories flooded forward of the bouts of trigeminal neuralgia that caused me to shout in sudden pain...right in mid-sentence at a meeting with my bosses.  And how can I leave out the moments of psuedobulbar laughter/crying jags that came out of nowhere, causing onlookers to doubt my sanity?  

I became completely overwhelmed.  To tears.  Not psuedobulbar in nature.

I realized that God was there in each and every one of those moments. Each time I wondered if a 'new symptom' would transition into my 'new normal'...each time a new symptom became my new normal, He was there. Every flare, every pill I downed, every IM shot, every bit of nerve damage to my face, every MS hug, every pain, every fear: He was there. I mean, I knew that...but in this moment, I really felt it.

I'm not promised that my days will be easy, but I am promised peace.  Peace in Him. And that's a feeling much more powerful than the sizzlie-tray-fajita-on-my-legs feeling.

Thankful for renewed mercies, unending grace...and aspirin. 



"I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world."  John 16:33


Saturday, August 11, 2012

Employment Appreciation Day(s)

I spend most of my 30min commute in conversation with the Lord.  I say 'most', because there are times I find the need to explain to other drivers how they could do it better - all while nestled in the confines of my tinted windows.  It goes something like this:  "Lord, thanks for...oh come on, you have to swing all the way out to the left just to make a right turn?  You think you're driving a Mack truck?  It's a Honda.  Ugh.  ...Lord, where was I?  Oh yeah..."

:::digressing::: 

Anyway, what I've been expressing so often lately is how thankful I am for the job I have.

Sure, it's a job...meaning it's an income...with a benefits package...and a coffee machine one cubicle away. And while I do give thanks for those obvious perks (no pun intended), the things I'm most grateful for have little to do with money, vision/dental insurance, or automated coffee.  It's about relationships.

I work with a neat mix of personalities.  Though each of us is different, we all just sort of...click?  Our bosses are incredible people.  They care about one another and us - far beyond whether or not we're on time for work (which I actually am, and that was so never me!).  Basically? We are a family.  In good times, we celebrate with and for one another.  In times of trial, we support one another with words of encouragement, hugs, prayer, even a surprise coffee from the local Dunkin'. Because you can always 'say it with coffee', right?  Totally.

I think back to how nervous I was to leave the comforts of where I was, and to take a direction that differed from anything I've done with employment in the past 15yrs or so. I'm passionate about working with kids. My 'office profession', previous to that, was medical coding/billing. But God (my favorite words) knew exactly where I needed to be.

So glad I didn't decide to go off in my own direction, confident that I knew what was best for me. I would have missed out on the blessings I have, right here, where I am :-)

Now if only I can stop referring to customer files as "charts"............


...for your Father knows what you need before you ask him.

Wednesday, August 1, 2012

Fine Motor Disaster

I've mentioned before how I developed a particular system of checks and balances (or imbalances...'tomayto'/'tomahto'), which I run through upon waking each morning.

Hear the alarm?  Ears - check!  See clearly, or almost clearly...with both eyes?  Eyes - check!  Move legs?  Check!  Does the room stay still when I stand?  Vestibular proficiency - check!  Make it to the bathroom in time?  Bladder - check!  I then give thanks to the Lord and begin my day.

...even when one or more of those checks don't work out the way I'd like, I still give thanks and begin the day.  Meh.

But some things can't be checked off right away.  Take 'fine motor skills', for example.

I find that out when I try to peel open my giant bag of Dunkin' and I...brace yourself.............CAN'T!  These are the days I wish I could just call out.  Why not go to Dunkin' on the way to work for my coffee?  Because I'm not going to be able to fish my debit card out of the small pouch in my purse.  Not going to be able to peck the change from my cupholder.  Yes, I meant to say 'peck'...because that's the motion I make with my hand while in a state of 'Fine Motor Disaster'.

Today's outfit for work?  Was the shirt with the giant buttons, which I got sick of dealing with by the time I finished.  It took me approximately 5 minutes to latch my necklace.  I nearly gave up and decided my boss knew me well enough by this point that I could ask her to help me.  Then, I realized I've only been there about 6 weeks.  Something I didn't hesitate to do at my previous job - asking a fellow teacher or boss to put my necklace on for me - has the potential to be slightly awkward in a new environment.  No, I didn't get it latched...but I did get the hook over the chain, which meant it kept sliding throughout the day as I moved.  In addition, I had to remove my thumb ring and nearly took my wedding rings off.  Though they spun freely, the sensation of having them on my fingers was of 'death grip' level.

And seriously?  Who designed the aluminum seal on yogurt cups with that tiny tab.  No thanks to that person, I wore a portion of my french vanilla yoplait...after I couldn't get it open and became frustrated, thereby mauling it with a pen.

Let's talk about writing!  I had a form to complete at work.  A form with tiny blocks.  Lots. Of. Them. I totally squinted my eyes in concentration, chewed on my tongue, tilted my head in 52 directions, and slowwwwwly pressed pen to paper - circa 1978.  Let me confess...my handwriting was also circa 1978.  Suddenly, I began to covet a gigantic pen.  I mean, how easy would life be if I had a gigantic pen?  Writing would be easier.  Yogurt would be easier.  It would command respect in the workplace.  It would make the following statement:

"This woman has a gigantic pen...and she's not afraid to use it!"

Get on my level.


Monday, July 23, 2012

Depression Tidal Wave

I have countless reasons to be joyful, joy-filled, joyous, and every other word you could create with the root word of 'joy'.  But that doesn't stop the occasional Depression Tidal Wave (DTW) from slamming me to the ground, swirling me around, and tossing me into unfamiliar lands. And, since it comes at me suddenly and from absolutely nowhere, it tells me it's perimenopausal...or ms-related...or maybe a lovely cocktail of both.

The only nouns (ya know, people-places-things) that don't get on my nerves when I'm like this?  Are my kids, my parents, a very select few people (people I don't select...the 'moment' does), and morning coffee.

It takes effort, sometimes tremendous effort, to maintain a 'collected' appearance. 'Collected' in that I force myself to shave my legs. To choose a pair of matching socks. To care enough to accessorize. To care so much that my accessories actually match my outfit.  It's like Garanimals - Grown Up Edition.

I'm grateful that these DTWs seem to strike and swirl for about a week or two, then eventually roll back out to sea.  They don't situate themselves uncomfortably over my head for months on end, as they did in the first few years of living with ms. Those were very bad times. And no, I didn't even bother to match my socks. In fact, I had a hard time just leaving my house. The coffee is good here...

What I'd love to do during these storms is retreat.  Be it to the beach, the mountains, the park, or simply my pillow (which is most accurate), it's all considered welcomed refuge.  But sadly, I can't hide my head under my pillow for the next 7-10 days.  Or maybe that's not sad...but what's actually best.

I have a family to love, a life to live, a household to help provide for, and most importantly, a God to glorify.  He is right here with me in the middle of every blessing, trial, and self-labeled DTW.  His ear is turned to me.  He hears my cries, even the unsubstantiated ones.  And the beauty of it all?  Is how much He loves me, no matter what.

Take that, DTW...


Zephaniah 3:17 
The LORD your God is with you, 
he is mighty to save.
He will take great delight in you,
he will quiet you with his love,
he will rejoice over you with singing."

Sunday, July 22, 2012

MS Challenge Walk - The Training Chronicles - Episode 5.0

I've been training for the MS Challenge Walk for awhile now, and I have decided to journal my adventures.  Hang in there...it should be fun ;-)

Today, I decided I wanted to try a little music with my training walk.  I was thinking it might push me the extra mile(s) I wanted to walk...kinda like how it causes my right foot to push the gas pedal further to the floor?

"Do you know why I pulled you over, ma'am?"

...absolutely, Officer.

In any case, I asked my daughter if I could borrow her 'iWhatever'. After a 20 minute tutorial on how to press about 3 buttons (on, fast fwd, and '+'), I began my walk.

Within approximately 1/4 mile, I got tangled up in the stupid wires, had ear thingies flying out of my ears, and dropped it on the ground.  Twice.  I needed to get creative. So...

I made myself an 'iHat'!  Not bad for an old lady, right?



It came to my attention that I was enjoying my iHat a bit too loudly, as I frightened this poor doe, who ran for the hills when I approached.  Sorry about the noise, girlfriend!  



The iHat and ample hydration resulted in a total of 3.8miles before my legs decided to morph into concrete.  Meh.  I thought maybe that was simply my limit.

Until Beyonce came on iHat.  (nice music selection, daughter-of-mine!)

All I could visualize was her live performance - the one with the head snaps that resemble what I think I look like when I have a neck tremor? Wicked dance from a chair?  Rockin' girl band? Here. Maybe this will help paint the visual:





I was infused with power and it became my theme music! I was climbing hills, audibly singing, matching my steps to the beat of the drum, causing at least 2 neighbors and countless wild animals to stare in disbelief!  I continuously pushed on iHat to replay the song over and over, until I arrived back home.  Where I collapsed into my chair.

5 miles.

I haven't walked 5 miles since I was athletic and in my early 20s.  Clearly, I am neither of those things - but I had theme music ;-)

Thanks for helping this old girl out, B!  If your people want to call my people about sponsorship for this big walk, it's totally cool with me...

Saturday, July 21, 2012

When Music Helps Me...Forget :-)

I've been listening to Christian music, primarily, for about 11yrs now.  Our local station is called Word FM, and let me just share a little bit about what the simplest choice in radio station/music has done:
  • When I felt as if life was caving in, it uplifted me.  
  • When I was stuck in my very lowest depression with ms, it comforted me.
  • When I was told that my son was worsening in his therapies and that I would need to spend thousands of dollars for yet another evaluation, which we didn't have, I heard DJ Timmy D's testimony about a place called The Family Hope Center.

That list continues, because let's face it...life continues.  And, like those 'Top 40 Countdown's used to say, "the hits just keep on coming!"  Thankfully, scripture has the last word on that.  

My favorite artist has always been Kari Jobe.  Without fail, in some very significantly scary moments, one of her songs has always just sorta...been on.  Moments of frightening health, moments of struggling relationships, moments of unstable employment, moments of downright financial collapse.  There is something about her songs, those lyrics, which breaks through the madness, gently grabs hold of my shoulders and says, "it's okay, God is going to work this out".  Though my mind is running at 200mph, though my heart is escaping my body in search of the ceiling, though my vision may be blurry - the message is clear.  The Lord is in control.

Get this.  We were blessed with tickets to see Kari Jobe.  In person.  But that's not all.  These tickets were 'Reserved', which meant we were able to meet her after the show.  

...I know, right???

My daughter and I became incredibly nervous as we approached.  For my daughter, she was about to meet this amazing singer that she's listened to over and over again for years.  And for me?  I was going to say hello to a sister in Christ with an amazing talent.  Someone the Lord has used on many occasions to speak to my heart through her gift of song.  

Instead of all of that meaningful speech?  I got up there?  And laughed.  

Thanks so much for your cameo, pseudobulbar appearance, ms.  And, because babbling and misplaced laughter are just a few of my favorite, invisible symptoms...I'm sure I looked slightly, if not completely, insane.  All I could say to her was, "I'm really sorry.  We're just a little starstruck.  Sorry.  So sorry."

:::all while giggling:::

Dear Ms. Jobe:

If I had it to do all over again, I'd explain that your gift has ministered to me so beautifully.  That I am grateful for the way in which my daughter looks to you as an example of a woman strong in faith who blesses others through her talent.  That perhaps the thing I enjoy most about you is your humility and the way you point it all back to the Lord, because it truly is all about Him.  Oh.  And that your music helps me remember - when fear weighs on me like a lead blanket - that my God is much bigger than my problems.  Also, I totally can't hit that high note you do in "One Desire".  Okay, so maybe I can't hit any of the notes, but I do love trying!  I should also share that - for those few hours of singing - I totally forgot I had ms.  Thank you for helping me forget. Really :-)

Sincerely,

Crazy-Laughing-Woman with the amazing daughter



Because I was afraid that ms might make a cameo at the worst time ever, I did add a little something to a note my daughter had written to her.  We left it on her table.  Maybe she'll read it and see that I'm actually pretty normal.  Or as normal as someone with holes in their head could be?

I don't even care how bad I look in this picture. By this point, I had slept about 5hrs, worked a full day, got rained on...twice, cried through the first 5 songs or so, and could barely stand without leaning on someone or something.  But I'm with my baby girl...and Kari Jobe!  I = happiest old lady ever :-)




One last thing...thank you for this song:




Oh...and this one, too:



And...well...you get the point...

Monday, July 16, 2012

Walking Through The Storms

No, really...I mean that literally.

Something you should all know is that I spent about 34 of my 40yrs being terrified of thunderstorms.  Like seriously terrified.  Thankfully, I'm much improved in this area, only by the Lord's comfort...and even a little therapy ;-)  Therefore, tonight, I decided I was going to head out for a nice walk, because the storms we were expecting were a solid hour away from us.  So they said.  I'm training for the MS Challenge Walk and, since I'm a big girl now and all...I ain't 'fraid of no storms!

I got about a mile away and noticed the gentle, cool breeze intensify to blow-hat-off-your-head level.  Meh.  I figured I'd be fine on the way back.  I live toward the right and, as you can see, the sky appeared fairly friendly:



Then I saw this cloud coming, full of lightning.  And darkness came:


My thought process - as I heard the thunder crash in closer sequence to the flashes of lightning - went something like this:
  • oh. crap.
  • no no...you got this...just a storm...God is here...you're fine.
  • hey, this is a blog post if I can outwalk this storm. I should keep taking pictures.
  • am I going to make it back before it's on top of me?  
  • I'm only about 5'2".  I probably won't be the lightning's first choice.
  • I can feel those weird electric sensations in my face, storm's close.  
  • um...
  • you know what, self?
  • look behind you >>>>    



When I saw it, I was amazed by the darkness and took a picture. Reality then hit. EEEEEEEEEK!  All of the sudden, I became that frightened little girl all over again.  I was paralyzed with fear, completely helpless.  I did something I didn't know to do when I was that little girl...I called out, "LORD!  Help me!"

What happened next?  Something in my mind (which I'd like to say was the 'still, small voice') calmly reminded me that I had a phone.  A phone which I should probably stop taking pictures with in order to call my husband for a ride home.

:::duh, why didn't I think of that:::

I'm grateful for moments like these...ya know, after they're long over with and I can see the truth in them.  Because the truth is, I have no control over the storms.  None.

The level of helplessness I felt when I realized how nasty of a storm was right over top of me?  Was the equivalent of what I felt when I was given that shot of morphine in the recovery room after giving birth to my daughter - and that someone let an elephant into the room, he sat on my chest, my breath left me, the lights went out, and there was a lot of muffled, urgent communication that ended with a thud to my thigh.  Morphine allergy.  Many thanks to the makers of epinephrine;-)

The level of helplessness I felt when I saw the lightning directly upon me?  Was the equivalent of what I felt when I was told my son was born with a rare disease that he may not survive.  Many thanks to the Lord, Who has the final say.

And lastly, that level of helplessness?  Was the equivalent of what I felt when I was diagnosed with ms.  And each time I failed a medicine.  And each time I woke up with very ugly symptoms.  Praising the Lord for carrying me through it all.

I'm not sure if it's my age, the 'storms' I've experienced, the Bible studies, the prayer ministry, or the combination thereof...but my comfort is found in the fact that God has the final say.  He is the only constant, which is the source of my peace in living with a disease - an entire life - that's anything but...  


 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Saturday, July 14, 2012

Taking Every Thought Captive - Part Deux!

Before I begin, I would like to express how humbled I am by the uplifting comments and messages of prayer I've received in response to my initial 'Taking Every Thought Captive' post.  I really can't even process it...that's how touched I was.  All I can say is: Thank you :'-)

Thursday kinda started off on a negative foot, due to the fact that my heart decided to leave my body and plaster itself to my ceiling somewhere around 1am.  Enter nighttime panic attacks, ice pick headache, and shaking.  I did take pride in the fact that I succeeded in dragging a brush through my hair and getting myself to work, looking somewhat presentable.  I made it for a few hours before having to leave.  Despite taking a 5hr coma-nap, I woke feeling even worse.  At that point, I thought it best to make my way to urgent care, where I fought to stay awake on way-too-tall-table adorned with crinkly paper.

It was on that table where 'those' thoughts began to pour into my mind:

- you shouldn't have left work today...you're going to get fired.
- you told your boss during your interview that ms wasn't a problem in the workplace...you're going to get fired.
- this is going to cost you an ER copay.  Ha!
- you don't look sick...everyone thinks you're insane.
- you're all alone...no one understands your health...
- you're all alone...no one understands the work atmosphere you came from and the way you carry yourself because of it.
- and, in case there was ever any doubt, you're definitely getting fired.

What did I do in the midst of this barrage?  Perched atop paper that echoed within those sterile walls each time I twitched...or thought about twitching?  Well, I did what any perimenopausal 40yr old with ms and other unfortunate, prior hospitalizations would do.

I cried.  Face in hands.  Like a 2yr old.

Wow.  Did someone at least rent a moonbounce for that pity party?  No?  Hmm.  Let's be sure to assign someone to that for the next time.

There's something about being completely halted in my tracks that helps me refocus.  I was able to combat each of those thoughts and speak truth back to them.  I told myself things like...I'm allowed to be sick once in awhile.  All I can do is my very best in this job - any job - and if I lose it, it's because God wants me somewhere else.  Isn't it great that I don't look as horrible as I feel?  I'm anything but alone - He is with me!  I won't pick and choose how I shine my light, or how brightly.  If I want to get really 'real' with someone and compliment or do something kind for them, I'm going to do it.  Every time. It's not so important what people think of me.  What matters is that I glorify the Lord in every opportunity :-)

And the ginormous decision I had mentioned in my 1st post? Got my answer for that one, too.  Turns out I'm already on the right path :-)

My hope is in the Lord.  I won't be shaken.  Twitching and tremors?  Sure!  I have a tremor in my right arm that could probably register on the Richter Scale ;-)  But shaken?

No...

Monday, July 9, 2012

Taking Every Thought Captive (self-esteem stuff + God stuff)

If I had to get really 'real' and point to one of the biggest issues the Lord has helped me overcome, it would be poor self-esteem.  Yep.  Totally overcame that one!

:::slapping hands together in vigorous washing motion:::

Okay, so I thought I overcame it?  But suddenly?  I find myself swimming in a series of negative thoughts.  And they're saying things like: 

- you disappoint your kids when you can't walk around the amusement park with them in 100 degree heat.
- you can't even use an elevator, because the bounciness makes your legs wobble.
- you can't do things as quickly as you used to.
- you can't learn things as quickly as you used to.
- the trials that are going on around you right now?  Are all your fault.
- the ginormous decision you need to make in the next week or so?  Will be wrong.   :::because:::
- the similarly-themed, ginormous decision you made a little while ago was wrong.  Which is why everything else is your fault.
- you're all alone.  No one understands you and your ridiculous invisible symptoms.  

Battling self-esteem is nothing new to me, I've just mastered the skill of hiding it behind a smile, joke, or laugh.  It seems like a lifetime ago, 'back in the day', when I couldn't face my own image in a mirror.  I walked with my head down.  I could never accept a compliment, even the simplest. There were reasons behind all of that, but if I were to write it out, we'd be lookin' at a lengthy testimony...which none of us are ready for, including me ;-)  Thankfully, here's where my 2 favorite Bible words come in:  "But God".  I don't struggle the way I used to with self image, but I find that ms has a way of trying to steal my joy.

Let's be real for a moment...these negative thoughts are lies.  Even my kids didn't want to walk around in 100 degree heat.  True, I may not be able to use bouncy elevators (stupid thoracic spine), but I can shuffle down the stairs quickly enough to beat my husband to the lobby.  I may be a little slower at learning new things than I used to be, but what's the big hurry, anyway?  Ha!  The trials going on around me are not within my control, meaning I can't own them.  And ya know, I probably will mess up that big decision I have coming up, which is why I need to give it to the Lord.  He makes all things work together for my good:-)

I guess the only way to fight these feelings is...to fight them. And to have a coolatta. Because a coolatta is always a great answer.

(let me know where I should send my therapy copay if you've made it all the way to the bottom of this post:-)


The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds. We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ. - 2 Corinthians 10:4-5

Tuesday, July 3, 2012

Happy Anniversary, MS

Awwwwww...........

MS and I are coming up on our 13th anniversary and, because I'm such a thoughtful person, I took a moment to look up what the appropriate gift would be for your 13th year of togetherness:

Lace.

Clearly, there is something wrong with the fact that my very first thought upon seeing that was, 'kind of how my cervical and thoracic spines look on an MRI?'  In that case, ms has already gifted me.  While I only have a handful of holes in my head, I was told they 'stopped counting somewhere around 30' in those areas.

That's funny.  That's about when I stopped counting my birthdays.

Maybe I'm 'an island of 1' in pondering what life post-dx has meant, but I do find myself quite reflective around this time of year.  I suppose it's in the same spirit as how a particular song has the power to plop you right in the middle of your senior prom.  And how, if you're me, you slap at the radio buttons in search of:  Anything. Else.

I recall just how ill I was early on, maybe the first handful of years or so.  Numbness, poor mobility, hearing issues, visual disturbances x 10, vibrations, vertigo, nerve pain, ms hugs, and the plethora of ginormous falls I took.  Lest I leave out the medicinal failures, due to intolerance and the 'administrative' aspects.  Because it's not a party 'til you've given yourself that thigh injection...in your artery!  Go me :-)

:::she-who-was-once-considered-the-life-of-the-party-has-redefined-the-party:::

I think back to the time my husband took me to the Cleveland Clinic, as if they would somehow be so 'expert' as to tell me that the spots on my many scans were simply the result of a dirty camera lens.  But they didn't.  Late that night, my husband and I had a bite to eat and went out for a stagger.  Well, he walked...I staggered.  I remember standing at the very edge of Lake Erie, my husband standing behind me with his arms wrapped around me, his chin on top of my head.  And me...tears in eyes...saying, "now's your chance to throw me in.  I wouldn't blame you."  But he didn't. 

I'd like to say I'm a little 'better' at it than I used to be.  I conserve my energy a bit more than I did.  I know how much I can or cannot exercise.  I have a better understanding of my limitations.  Like playing on the church softball team?  Is not something ventured any longer.  Carrying 32 bags of groceries in 1 trip?  Is now the job of my family.  Offers to be strapped into a 5-in-1 moonbounce at a birthday party and be launched 30' in the air?  Is not something I'm compelled to do.  Why?  Because I recall the 'Log Flume Debacle of 2006', thank you very much.  I'm obviously made to be right here...on the ground.

In the meantime, I hold fast to my Lord through the trials.  I find such a peace in Him.  Like my favorite song from church - the only one I'll actually *not* lip synch to - says:

Have you seen Jesus my Lord, He's here in plain view.
Take a look open your eyes, He'll show it to you.
Have you ever stood at the ocean, with the white foam at your feet?
Felt the endless thundering motion?  Then I say you've seen...
Jesus my Lord


Lace.

Would a piece of cheesecake that's served on a doily be close enough to lace?  Meh.  I think we all know that cheesecake is always the answer...





...so glad I didn't get thrown in:'-)

Saturday, June 30, 2012

So Not A Receptionist...

I'm about 2 solid weeks into my new job as an 'Accounting Assistant'.

Accounting Assistant.  That's like...working A/R reports, billing stuff, posting stuff, counting stuff, sorting stuff, paying stuff, and calling people to talk about when they might be able to pay stuff.  I like that kind of stuff.  I feel confident in it.

...but I'm also supposed to answer the phone, which makes me 'a receptionist'.

How hard is it to answer a phone?  Apparently, picking it up is easy...it's the rest that presents a challenge.

I don't know if it's the buzzing in my head or the fact that my brain runs at approximately 200mph, but I can't seem to isolate the sounds of caller's voices from the background noise of their own telephones.  And, because I'm still fairly new and definitely unfamiliar with the names of the various companies, all I'm able to do is...my best?  When I transfer the call to a coworker - I take the caller's company name and toss it up into a creative little word salad.  MSers, you feel me on this one.  I know you do :-)


  • A company named after a man named "Tom"?  Becomes 'Tom Sawyer'.
  • A company name that rhymes with the word 'tobacco'?  Becomes 'Tobacco'.
  • A customer named Sharon?  Becomes 'Susan'.  Sara is now 'Sierra'.
  • And if your company has more than 3 words?  I simply say, upon transfer, "um...are you available for Dan from a company with a ridiculously long name?  Kay, thanks!"


In other words, there are times in which my brain has hit 'plaid' (clever Space Balls reference) and I can only do what it allows me to do, which is 'be funny'.  I still find myself nervous at times, which we all know is never a good thing for our minds, regardless of holes.  Or not.  I know I'll settle down...settle in...etc.  I've decided to take the breaks I'm afforded in the morning and afternoon, rather than working straight through and re-caffeinating.  Instead, I spend that time with my nose stuck in a devotional book.  That's got to kick in at some point, right?  Right.

Thanks be to God for coworkers who can laugh both with and at me.  And above all, I praise Him for a boss who has handled me with grace and patience.  I am confident that I have been purposefully placed right where the Lord would have me be.  In the meantime, I have to try to get better at this 'receptioning' thing ;-)


Sunday, June 17, 2012

Nuthin' But Blessings - a story about my son

I'm pretty sure I've written before about the health challenges my son endured in the first handful-or-so years of his life.  To sum it up, he was born with a condition called eosinophilic gastroenteritis and a secondary diagnosis of 'failure to thrive'.  He's 12 now, quickly approaching 13...like next month.

My husband and I are still wondering how it is that we have 2 teenagers.  My husband is old enough for this, but not me.

(we're only 2yrs apart in age)

In any case, my son is on the small side of the coin.  Like 5th percentile on the dreaded growth chart.  And he's got a bit of a complex over it.  For example, when the dr sent him for labs in order to verify all systems were functioning properly?  He was angry to hear that the results came up 'within normal limits'.  He said, "I was hoping there was a pill for this or something!"

We tell him the same thing every time:  "Just you wait.  With feet that size, you're going to grow up to be a big man!"  To which he always says, "yeah right..."

Last night, we went to a double A baseball game and sat where the opposing pitchers were warming up.  Two of the players were so tall that their heads were above ours...and we were in the stands.  My son was watching them and, because we have that sort of relationship where we know one another's thoughts without speaking, I knew his wheels were turning.  I had said to him, "you could be as tall as that guy someday, bud!"

...to which he said, "YEAH RIGHT!  I'll never be that tall.  If I even grow at all!"

I put my arm around him and turned my focus back to the game.  All of the sudden, something came toward me from the side.  It was a baseball...from the pitcher...tossed to my son...prior to his taking the mound.  By the size of the player's smile, I reasoned that he heard our discussion.  By the size of my son's eyes, I concluded that he was in a state of shock :-)

After the game, my husband took my son to the visiting team's dugout, where he stood before a 7'1" pitcher, asking him if the 6'5" pitcher was available so that he may thank him for the blessing.  My son took special notice that the player had prayed before he threw his first pitch and that touched his heart.  He didn't get to meet that particular player, as he was already in the locker room, but the 7'1" pitcher spoke with him and signed his beloved ball.  Again, that touched his heart.

Mine and my husband's, too:-)

Hang in there, my son.  You are a boy after God's own heart.  You are too young to understand the things that you've overcome in just 12-almost-13-years.  You are the definition of 'perseverance'!  And don't you worry...you'll grow.  You have to in order to properly balance that 'body to foot size' ratio :-)




I remember how embarrassed he was when I made this picture.  That's okay.  I'm pretty sure that's my duty and right as a mother to embarrass my teenagers...

Friday, June 15, 2012

Starting Over

This week, I began my new job as an accounting clerk.

I started over.  All new boss (who's like...one of the top 5 'Nicest People Ever' that I've met, and that's saying something).  All new coworkers.  All new surroundings.  All new bathroom.

I had a few fears from the start.  First?  That I'd walk into something.  Next? That I'd trip and fall in my new shoes.  See, I thought it best to replace my scuffed toe shoes with a pair of $9.97 black flats from Walmart. Thank you, Sam, for making shoes that even I can afford.

Thankfully, I didn't walk into anything.  Even more 'thankfully', when I tripped, no one saw.  And I think I speak for all of us when I say, "if an ms'er trips and no one sees her, then she didn't trip at all".

Sidenote:  Exactly what is taking so long for someone to create a t-shirt for us that clearly states, "I'm not drunk, I have MS"?  Someone needs to get. on. that.

In any case, ms chose a fantastic combination of symptoms to throw at a 'new girl on the job'.  Brain fog and pseudobulbar tears.  Try learning a new computer system and work process when you can't remember to turn your car off before getting out of it, or can't remember the alphabet.  The alphabet, people.  She who was once 'advanced placement' all through high school?  Had a mental recall equivalent to dumping a can of alphabet soup on the floor and splashing around in it.  The tears were a nice touch, as well.  Nothing like rushing to the bathroom in order to cry in privacy - with no idea as to why.

How did the week wrap up?  All in all...fairly well, thanks.  How'd I manage those symptoms, being the medicinal failure that I am?  Easy.  I chose to manage the outward appearance.  I took refuge in a bathroom stall when applicable, and in the privacy of my car, where I prayed and poorly sang a worship song.  People say 'it's a joyful noise to the Lord'.  No it's not.  I lip synch in church, friends.  Milli Vanilli ain't got nuthin' on me...

I trust that the Lord has put me right where He wants me.  I pray that my coworkers might find something 'different' about me that has nothing to do with holes in my head, and everything to do with my 'light'.  This week, ms was pushing hard for that spot...but next week is coming.  'Cause I'm so *not* above bringing an alphabet strip from my old job to this new one and taping it to my cubicle until this storm passes...

Look out, world :-)

(...the song I was singing to myself each day.  At least I remembered something.)


Tuesday, June 12, 2012

Compassionate Wife - FAIL

Over the past 2 weeks, ms has been throwing one of its parties.  Be it a change in the weather, an increase in stress level, or just an overall boredom on its part...ms decided to 'bring the noise'.

- Vibrations in my head that slightly shook my vision.
- Leg pain that hurt so badly I was certain someone was stabbing me.
- Chest pain that woke me from a sound sleep and persisted throughout the day (and night), intermittently, every day.  Of course it threw me into an all-out panic attack on the first night, which prompted me to complete mental math at 2am in the effort to determine whether or not I had enough in the bank to cover my ER copay.  By the time I sleepily calculated that I did not, the pain turned off like a light switch.  Times like these, I imagine ms hiding behind the sofa...giggling...
- Fatigue.  Fatigue so significant that it could be pronounced..fuuuuh - teeeg.

For the most part, I've kept all of this loveliness to myself.  I mean, isn't that what we do with invisible symptoms?  Imagine having coffee with a friend and she's telling you about her kid's elementary school 'graduation' (because apparently, one graduates every single year now) and you respond with, "That's awesome!  At this very moment, it feels as if 48 tarantulas are running around on my left thigh."  Instead, I respond with, "That's awesome!  I'll bet he can't wait to graduate next year!"  ...and the next...rinse and repeat...

I keep invisible symptoms to myself, with the exception of the fuuuuuuh-teeeeeg, which I joke about with my kids.  They're old enough now to laugh at ms with me and they've never known me without it, so whatever I do is really to be considered their mother's 'normal'.  Anyway, we do this thing where we talk without moving our lips, just 'sluggish speech through our teeth' sort of thing.  The other night, my husband was staring at all of us as I sluggishly communicated to the kids that I wished for them to wash the dishes piled up and over the sink.  Or throw them in the trash can - I really couldn't care less.

**in my hole-filled mind, that should've been his clue that I wasn't feeling well**

Fast forward to last night.

I had an 'ms hug' wrapped around my head with boa constrictor force, a cramp in my foot that nearly dropped me where I stood, and I was grateful for it all.  Why?  Because without it, I'd have surely fallen asleep standing up.  I explained to my husband that I was overly tired and concerned that I wouldn't be as alert as I should be to pick our kids up from a pool party they were enjoying.

His response?

"ugh...I guess I could come along with you.  It's just that my hamstrings have been tight all day from when I did that little bit of yard work yesterday."

My unfiltered response...as I walked away in annoyance...

"...gotta be KIDDIN' me!  STRETCH THEM!!!  Go for a WALK or something...little bit of yard work...ugh..."

(FILTER BACK ON)

Enter overwhelming guilt and recognition of necessity to apologize. Immediately.

His face was priceless.  Mouth - open.  Eyes - of equal diameter to baseballs.

"um...I'm...really sorry.  I'd LOVE for you to come with me!"

Have I said lately how grateful I am that the Lord gave me a patient husband?

(Note to self:  Be kind to man with temporarily sore hammies.)


Compassionate wife?

:::FAIL:::

Saturday, June 2, 2012

I'm Baaaaack!

Hello, people!

It feels as if it's been such a long time!  Where do I begin?  I suppose I could begin with a summary.  Over the past 3 months, I've:

  • gotten groceries relatively incident-free approximately 14 times
  • had 2 additional MS magnets stolen from my car
  • witnessed my kids win some really neat awards
  • had several disagreements with the basset hound
  • lost my job
  • turned 40
  • ran into a curb in a parking lot - hard
  • changed my Dunkin' Donuts drink of choice from caramel iced latte to vanilla bean coolatta
  • changed my hair color to red
  • gone out for cheesecake once

As you can see, one of those points is fairly devastating.  I'm just as confused as you all by the fact that I've allowed 3 months to go by without treating myself to cheesecake more than just once.

MS has been somewhat quiet...unless, of course, that's just because I've been busy turning 40 and changing my hair color?  In which case, it's just not been loud enough.  

Alas, I was reminded of its presence during a trip to Dress Barn to try on new tops for job interviews.  I glanced around the racks and spotted the most perfect blouse ever.  I proudly pranced it into the dressing room and prepared myself for the fabulous transformation it would surely complete in me.  I gently pulled it over my head and felt this horrifying sensation around my ribcage!  I nearly tore it in my spastic efforts to GET. IT. OFF.  Ah ha!  I didn't notice the elastic banding around the middle of the shirt prior to trying it on.  Note to self.  LOOK next time.

A shirt that mimics an MS Hug?  Should be illegal.  Also illegal?  Should be curbs that have the ability to get up and move - into my path.  Ugh.

Because I'm all about sky pictures, I'll take a moment to post one I recently took:


See that light peeking through the clouds?  That's what I call "hope".  And that's what I'm focused on :-)  Though on second glance, it looks a little like one of my brain lesions.  Hope...brain lesion...tomato...tomahto...


Be strong and take heart, all you who hope in the LORD.

Followers