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 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 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 :-)


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: 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 got this...just a storm...God is'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're going to get fired.
- you told your boss during your interview that ms wasn't a problem in the'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 one understands your health...
- you're all 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?


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 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


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:


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 your artery!  Go me :-)


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


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