It'll Be What It'll Be

Yesterday, as I was working with a couple of my students, I couldn't help but notice how suddenly my feet began to ache.  By the afternoon, the ache became pain...pain which traveled up to my knees.  My shoes?  You bet I kicked 'em off.  Traded my "dramatic pacing" teaching style for an "animated rolling about in my desk chair" approach.  Let me tell you what the tiny, plastic wheels on a desk chair don't roll over:  Cords.  I was nearly thrown onto my face.  As I reflect, I can't help but chuckle at the imagined visual of me...face planted on the floor, tangled up in a chair...

The aching feet that became painful feet and knees transitioned to roaming nerve pain that traveled from my calves, around my shins, into my knees, across my thighs, and spiraled around the back of me...ending in my hips.  At that point, I became concerned.  I stood to make my way to the bathroom and felt as if my legs weighed about 200lbs.  Each.  I struggled up the stairs, made my way into the bathroom, and began to converse with God.

See, for the first time in about 4 years, our family is going away for the weekend.  As I wondered if ms was toying around with my mobility, the only thing that came to mind was, "Lord, please don't let anything stand in the way of our going away this weekend.  The kids are so excited, we are so excited, please let me be well for this trip.  Not for me, but for my family." 

I took my husband aside and explained what was happening.  He was not on the same page as I was, obviously, because he instantly became fearful.  I recognized it by his complete silence.  See, I was more annoyed at the situation than afraid, probably because I stopped worrying about my mobility years ago.  I'm pretty much at the point that it'll be what it'll be.  He's not 'there'.  I suppose I can understand that. 

Wait.  Actually, I can't.  I don't know what it's like to be my loved one.  Thus why I tend to keep so much of how I'm truly, actually, honestly feeling...to myself.  I don't want anyone to worry.  Fellow ms'ers, you know how that goes ;-)

The painful, aching, heavy feelings in my feet, legs, and hips lessened by this morning, but tonight was "Parent Night" at school...meaning I stood for 2 hours straight with a fake smile on my face, leaning against the lockers when no one was looking.  The hugs that my friends and the parents of my students gave me were welcomed, because I could hold onto them for a moment.  I love hugs.  They're so functional on many levels :-)

As I said to the Lord in my 'bathroom hideout' conversation, I fully recognize that I'm in His hands and I'm comforted by that.  Being the medicinal failure that I am has actually helped me to find peace in His promises.  Ya know, that He plans to prosper and not to harm, to give hope and a future.  And how, in this life, there will be trouble...but He has overcome the world.  I'm fearfully, wonderfully made.  His thoughts for me outnumber the grains of sand.

The holes in me?  Don't change that.  They never can.  They never will.  No matter what.

Lord willing, I'll be standing on the beach tomorrow.  One guess as to what I'll be thinking of as I look out across all...that...sand :-))) 

MS + Perimenopause = A New Kind of Crazy

Perimenopause.  MS.  Which do I blame for...what?

My friends at the MS Foundation had some info that I wanted to share with you.  Ya know, in case you're wondering as well...


By: MSF Staff and reviewed by the MSF Medical Advisory Board

If you find yourself attributing every physical and emotional symptom you experience to MS, you are in good company. (whew!)  But if you are in your early-to mid-40s, (or, in my case, late 30s) some symptoms, such as weight gain, sleep disturbances, or volatile mood swings, may have nothing to do with MS. You may be among the 80 percent of all women who will experience perimenopause.  (oh thank gawwwd!)

Allow me to break this down into a confession of sorts:

Weight Gain:  I haven't actually gained weight, per se.  It's more of a "weight shifting", if you will.  In other words?  Gravity has not been kind to me.  And not just in the way it messes over you after you have your children.  No no.  This time, gravity was non-specific and equal opportunity.  It's a total body extravaganza.

Sleep Disturbance:  Oh you betcha.  Add the "ms potty breaks" to the "waking up in sweat" to the "waking up freezing" to the "vivid dreams" and what you've got by 6am is a very tired me.  A very tired me with paraesthesia who can't get down those steps fast enough to the coffee maker.

Volatile Mood Swings:       :::crickets chirp:::

So what do they suggest over at the MSF?  Well, several things that I simply can't get with - like reducing caffeine intake.  MSF!  It's as if I never knew you!  NO. CAN. DO.

I do like this comment, however:

"Attitude - A positive attitude can make all the difference. If you need support, seek counseling or join an online support group. Talk on the phone or have lunch with your friends more often. Nothing lifts your spirits more than sharing mid-life stories with a good friend! Rather than falling into the “I’m too old,” mindset, why not try, “I’ll never be younger than I am today?”

My Mom went off by herself a lot.  Now that I'm experiencing these feelings, I can see why.  Yet as similar as we are in so many things?  Is as differently as we are wired.  Secluding myself is not good for me.  Sharing a time of fellowship with a friend is so precious and uplifting.  I can't so much have a mutual sharing of perimenopause stories with them, because they're not experiencing it.  They'd be mesmerized if I shared that I've traded the knock down, drag out, monthly migraines and heart palpitations for "let the body hit the floor" + "monthly sweaty, freezing, dizzy, tingling, fughhhtigued, extra deodorant needing, Big Ball of Hate" - ness.  TMI?  There are other things I'm holding myself back from disclosing.  Trust me ;-)

Mom says I've got another 10-11 years, tops.  Lord willing, I'll be able to start some form of an exercise program that puts the brakes on gravity's pull...and my friends will continue to bless me with their fellowship...and my husband will be given an extra serving of patience.  Because living with ms is challenging enough.  Perimenopause?  That's a new kind of crazy!

Saturday Morning Emo - Part Deux (my husband's, this time)

Some time ago, I wrote a post entitled "Saturday Morning Emo".  It was a sharing of my emotional state as my husband readied himself for his day of work at his part-time job.  I typically miss him before he leaves and have to "man up", not allowing him to see my sadness.  While he wouldn't prefer to work every possible hour available to him, he does it with joy, because he takes his role as "provider" very seriously.  That said, our weekend morning conversations are comprised of him sharing news stories and sipping coffee.  Wait.  He's told me before that "men don't sip coffee, hon...they drink it."  Let's try this again.  He drinks his coffee and shares news stories.  I sip mine and try not to miss him before he's left.  He remains joyfully aloof, I hold my emo together with the equivalent of 1 finger.  He ties the 25 feet worth of boot string on each boot and peacefully sets out about his day. 

Not today.

He was silent as the news stories unfolded.  When the coffee was finished, he stood up and began to mumble in frustration.  He walked his mug to the kitchen (it's that large that it must be walked) and dropped it into the sink, creating a ruckus.  He proceeded into the living room, still mumbling.  Finally, I asked the million dollar question.

"What's wrong?"

And then it began.

him:  "Nuthin'.  They want me to learn the computer today.  I don't DO that.  I drive the truck."  (he's so cute, because his response is always 'nuthin', followed by the thought.  My daughter does this too)
me:  "what do you have to do on the computer?"
him:  "I have to learn how to sell the trees in it"
me, calmly:  "okay, I'm sure the girl will show you"
him:  "yeah...you know how you fly all around that thing in netbanking?  THAT is how she'll 'show' me.  She'll say, 'you do this, this, and that and that's it'.  Then, she'll leave.  Maybe nobody will come in to buy trees today."
me:  "it'll be ok, hon"
him:   :::incoherent mumbling:::
basset hound:   :::opening one eye, closing it:::

Oh I get it now.  It's not only the computer, it's the fact that numbers are involved.  My husband is allergic to numbers.  They give him hives.  But put numbers on a computer screen and ask him to do something with them?  Anaphylactic reaction.  This is why he put me in charge of the banking way, way back.  When a man in church challenged him on that with, "as the man of the house, you should be in charge of the money", his response was, "because I'm the man of this house, I recognize what I can and can't do.  That's why I put her in charge." 

Case in point?  Several years ago, when I went through the significant cognitive flare of forgetting my passwords, my extension at work, even our own phone number, he would not take over the checkbook.  He said, "it's just a flare, right?  It'll go away.  These creditors can wait 'til you're feeling better."  I called my mother in to help me.  And fairly recently, I asked if he wanted to learn our new bank's netbanking, he stuck his fingers in his ears and said, "la la la la la la". 

Literally.

It's okay, honey:-)  I love you.  But I'm going to post your picture on here so everyone can visualize you with your fingers in your ears, making noises so as to avoid an allergic reaction to numbers on computer screens.  Because it's who I am.  And you love it.

Laughter Is The Best Medicine - side effects may include incontinence, but so does MS :-)

Have you ever hit that level of "down" where the simplest, most obscure things make you laugh? And by "laugh", I mean tears of hysteria rolling down your face, accompanied by the crossing of legs?

If you answered "yes", then I graciously give you...


(caution: I have been singing this version of the song for 2 days. Watch at your own risk.)


(...because this should have been the official music video.)




(I'm wanting a bird who can answer the phone for me, because it would go like this. me: "I'm sorry, you wanted that payment when? Hold please. Bird? It's for you." Bird: "Hello?")



Note to self: Attempt to train basset hound to dance, sing, and/or answer the phone.

Sidenote: Yeah, I'm going to need a bird.  See?

Emotional Limbo...How Low Can Ya Go

Pretty darn low, let me tell ya;-)

An array of situations seem to point at me, laugh, and say: "you're less than", "you don't matter", "you're really not all that important".  I could list actual examples, but there's no need.  I don't want to give them any more power than they already have.

In my own assessment, I've done fairly well in battling those feelings away with prayer.  But then there's always that one thing, oftentimes a very silly thing, that throws me straight over the edge.  And that thing is happening.

My husband's work hours, which typically lessen from around December to March...have lessened 3 months early.  I'm a little too numb right now to really feel that.  Like the Top 40 Countdown, our financial hits just keep on comin'.  What's bothering me is...he's in my way.

I can't make my morning coffee (collective GASP!), because he makes his full pot and dilly dallies around until it's time to leave.  Pour a cup from his?  Wish I could, however, it's perfectly calibrated for a specific amount of cream and sugar he's already poured into his thermos.  As if that's not enough, he likes to sit in the dark and watch the news.  I enjoy having a light on so that I don't trip on an unsuspecting, lounging dog.  Then, as I'm working in our netbanking account and listening to music, he feels the need to update me on the news stories.  My ability to multitask doesn't kick in until...after a cup of coffee that I cannot enjoy, so I must stop and listen to him.  This morning's update, just as I was calculating exactly how much money we would not finish the month with was:

him:  "Hon, did you hear about this?  A high school just banned all perfumes, colognes, and fragrances, because a teacher is allergic."
me:  :::crickets chirping:::
him:  "did you hear about it?"
me:  "no."
him: "you didn't?"
me:  :::erasing the '9' I errantly wrote, making it an '8', looking up at him in annoyance:::  "no, honey"
him:  "oh.  I was wondering like...why is that news?"

Lord help me. 

Please pull me up and out of this hole.  In addition, please help this man - whom I love deeply - understand that I do not wish to converse with him whilst he's tying up the coffee maker.  Please instill in me an added measure of patience.  Please help me remember, as I'm wanting to throw my pen at him, that it's out of love for me that he wishes to converse with me.  He knows how I'm feeling and he's trying, which is very sweet.  In turn, I'm trying to handle these latest challenges with grace, but everyone has their breaking point.  Mine...is the coffee.  A girl's gotta have her coffee.  Please and thank You, Lord...please and thank You.

Be well, everyone!

Just Gimme The Chicken - another grocery story

I was in the grocery store, just trying to grab a pack of chicken.  But there was a group of 3 very chatty, older gals who chose to park themselves directly in front of the case.  You've heard folks like this, right?  Someone says, "how have you been?" and it's as if they've been asked for a complete dictation of their medical records.  Me being me, not wanting to interrupt, I chose to poke around at items nearby in the hopes that they'd move along in a moment or two.  But they did not.  See, the 'askee' had her knee scraped.  Turns out the 'askor' knew a woman who had her knee scraped?  And she was never better.  The 'askee' then advised that her husband finally got his hip replaced.  The 3rd gal said that was great.  Her husband had a spot taken off his nose.

I really just needed that pack of chicken. 

For a moment, I wondered what it would be like if I were to politely excuse myself...reach in between them for that heralded pack of chicken...and say:

"Isn't health somethin'?  Ya know, it's the funniest thing!

...on Saturday, I couldn't see far away, so I almost put my foot through the floorboard when I mistook a trash can for a deer!  Also, I lost my ability to taste things that weren't extra seasoned, super spicy, or heavily flavored. 

...on Sunday, I could see a little better, but I felt this emotional blanket...a weighted one...come over me.  It made me feel worthless, and broken, and alone.  To the point where I was on my own nerves.  But that's not all.  It made me sleepy.  Very sleepy, in fact.  Yet I could not sleep.  Oh, and I had an 'ms hug' going on, but not around my torso like usual.  This was around my throat. 

...on Monday, I had tremors in both hands.  I proceeded to drop everything from keys to sandwich to chalkboard eraser to chalk.  My students didn't know what to make of it and didn't dare laugh, because they're so sweet and polite.  I told them it was 'hand tremor Monday' and that they might want to move back a smidge or duck.  Then they saw the humor;-)

...and today, I woke up at 2am with a nagging headache.  I woke up each hour 'til it was time to get ready for work.  When I got out of the shower, I felt nerve pain wrap across the left side of my face.  My right side, just under my arm, feels as if it's on fire.  And if I jump or go down the stairs or walk in a heavy footed manner, I've got this tooth that hurts.  It's right here (digging at mouth).  Sometimes my gum above a particular tooth will hurt, but nothing's the matter with it.  Joke's on me, 'cause it's just an irritated nerve!

Know anybody like that?  No???  That's a shame, 'cause I could probably find you a bunch of folks who will give me an 'amen' on all the above!"

And I imagined their response to be:  "You are the most intriguing person we've ever met!  Please, you must do coffee with us.  We won't take 'no' for an answer!  Helen and Barbara will love you.  We love you.  We. Love. You!"

As I laughed to myself as to how that all might have played out, I did what any honorable woman would do.  I sent my kid to get the chicken.  Helen and Barbara will just have to wait to meet me.  It's for the best.  They may not be ready for all that I am.

Can I get an 'amen'!

The Cloud of Loneliness

I'm sitting in it.  Nevermind the fact that I'm also sitting among my 4 snoring dogs and 4 prowling cats (they're taking up their respective positions for their nightly 2am Fe-lympic Games).  My loving husband is a staircase away.  My amazing kids are snug as bugs in rugs, as if I ever truly understood that phrase.  I've got family and friends who are literally a phone call away.  Despite it all, I'm right here, in that lonely cloud.

I haven't felt this way in a very long time.  I could blame it on the fact that we've had nothing but torrential downpours and flooding for the past week, or I could chalk it up to perimenopausal hormones.  But the fact that I'm getting over some sort of week-long, fever-accompanied virus has a way of illuminating the neon sign that reads, "Now Playing:  MS!".  Summer-long remission = over.  The painful bruise from my colossal fall mocks me.  Ow.  The I-can't-see-stuff-that's-real-far-away vision teases me.  Take the deer I noticed yesterday at the road's edge, for example.  I punched at my horn and it didn't run away as they typically do, so I did a lighting-fast rear view mirror check (all clear!) and stood on the brake pedal, bringing my car to an abrupt halt! 

Let this serve as a public service announcement: Roll your trash can back to your garage after pick up, folks. The brakes you save might be...mine.  (no trash cans were harmed in this re-enactment)
 
Loneliness.  Depression.  Tomato.  'To-mah-to'.  It all blends together when it runs me over.  It zaps my energy.  It amplifies the very real stressors that are currently trying to take my joy, stressors which I'd normally cover in prayer and push through with grace.  But now, I just want to cover my head with a flannel sheet and push my feet through socks.  It causes me to become offended at things I would ordinarily laugh off.  It makes me question whether or not something I'm feeling troubled by should be discussed or if I should wait it out, in case it's just my current state of mind.  Tasks I set out to do take 3x as long as they should.  I can't stay asleep for longer than 2 hours at a time.  That, in and of itself, is depressing.  God bless my husband, who woke me this morning for breakfast and church.  How could he have known I had just fallen back to sleep an hour prior?  I'll betcha my startled jump, unstoppable tears, and response of, "you have GOT to be kidding me!" may have clued him in to the fact that something was amiss. 

I don't want that.  I don't want people to think I'm emo, that I don't have my stuff together.  What do I do?  I put on my Happy Face.  There's safety in the HF, right?  It's gotten me through a lot.  An ill son, an ill me, loss of my business, ill relatives, and several other difficult situations.  The Happy Face...who knew?  No one.  That's who;-) 

If writing about it helps someone to know that they're not alone in their loneliness...then, like the Hokey Pokey, that's what it's all about.  But if you're someone who will see me tomorrow?  You're getting the Happy Face.  I'll be riding out this storm armed with the trifecta of prayer, the HF, and a pumpkin spice Dunkin' Donuts coffee.  This too shall pass, and not soon enough.

Be well, friends...and get yourselves a coffee...pumpkin:-)

 


"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." - God, via Isaiah 41:10

"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." - Jesus, via John 16:33

"Truly knowing you are a child of God doesn't mean you will never be or feel lonely..." - Debbie, via Facebook

(PS...everybody needs a 'Debbie')

We Are Awesome :-)

I came across a blog post that I really loved and identified with.  It's called, "Waking Up Full of Awesome".

A snippet goes like this (and I'll link it for you so you can read it in its entirety):

"There was a time when you were five years old, and you woke up full of awesome.
You knew you were awesome.
You loved yourself.
You thought you were beautiful, even with missing teeth and messy hair and mismatched socks inside your grubby sneakers.
You loved your body, and the things it could do.
You thought you were strong.
You knew you were smart.
Do you still have it?
The awesome.
Did someone take it from you?
Did you let them?
Did you hand it over, because someone told you weren’t beautiful enough, thin enough, smart enough, good enough?
Why...would you listen to them?"


I'm trying to think back to when I was 5.  That was what...1977?  Kindergarten.  Interesting clothing.  Good tunes.  Did I feel awesome?  I stare at a picture of myself and realize that, by the look of my confident smile, of course I did.  I had a white denim leisure suit that my parents spent far too much of their far too little money on.  How could I not be awesome in that?  I knew I was beautiful, because my grandmother always called me "pretty face".  I knew I was smart, because my Dad had me reading at 4.  I loved myself, because my Mom showered me in love and adoration.  I suppose I was pretty awesome:-)

Did someone take that feeling from me?  Yeah. 
Did I allow "someones" to take it at certain intervals of my life?  Mm hmm. 
Was I was told I wasn't pretty enough?  Thin enough?  "Enough", in general?  Yes. Literally.
I can recall more than a few times in which I handed my awesome over to undeserving people and situations.  Why?  Because I listened.

That was then.  Now that I'm older, I don't 'listen' so well.  Hey, if my grandmother can play that "can't tell me nuthin', I'm old!" card, so can I.  It's gotten her this far in life;-)  In this case, not listening is a blessing...because ms has certainly tried to take my awesome.

I have a full understanding of what ms can take from me, but I must remain focused on what it cannot.  My faith, my ability to love, and my nearest and dearest relationships are off limits.  Not to say that each of those hasn't been tested, because they most certainly have.  But by His grace, strength, and mercy...they're mine for the keeping.

As for my awesome?  Puh-leeeze.  MS could never take that unless I hand it over.  Ain't happenin'.  Don't you hand it over either, because let's face it...we are awesome:-) 



http://blog.pigtailpals.com/2011/08/waking-up-full-of-awesome/ 
(that link I promised)

MS...Is That You?

Am I the only one who struggles with what to blame on ms and what not to?  Am I the only one who takes a moment to wonder if I'm mistakenly not seeking care for a medical condition that may or may not be present because, "oh that?  That's probably just ms."  Let's face it, ms is an easy target because it's so diverse, so variable, and so...bizarre.

Recently, I've been forgetting things like dates, prior commitments, and the fact that...if my son got a ride TO soccer practice, he would obviously need to be picked up FROM soccer practice. 

(oopsie?)

I've had bouts of dizziness with varying intensity for a few days.  Today, I woke up feeling as if it would simply be too much trouble to get up and use the bathroom...too much energy to prepare my breakfast...and too much effort to change from pjs into actual clothing.  Fugh...tigue.  Ti...errrrd.  If I'm too unmotivated to eat, that's borderline emergent.  When you're sturdy like I am, it's understood that food is not typically neglected.  The amount of concentration I'm having to reign in just to complete this post is startling.  My throat feels swollen inside.  I dislike that.  I have other weird things going on, but I don't have the energy to describe them.  I just want to be hugged, but not by ms.  Not that I discriminate where hugs are concerned, but the hugs ms gives are quite awkward, right?  Right.

Despite the root cause of this sudden bout of unwellness, my spirit is riding high:-)  Tomorrow is my first day of work for the school year and I seriously cannot wait to get back to serving my students.  I'm coming off the most fantastic summer I've ever had, feeling the healthiest I've ever felt.  There are so many exciting things coming up over the next few months that I don't know where to start when giving specific thanks for my blessings.  Simply stated, I feel very much on top of the world!

On top of the world...and very, very tired...and other things that I'm too tired to describe.

Insurance Black Widow

Health insurance.  As much as I complain about the high cost of our family's premiums is as thankful as I am to have it.  It's the 2nd highest bill we have in our household.  I'm positive I'm not alone in that fact, that many folks rank it #2, even #1 in monthly expenses.  But I'm thankful to have it.  (though when I break it down, we're paying out $9,724 in premiums and the ins co pays out maybe $500 or so in claims, and that's if we all go to the doctor like we're supposed to...which we don't, because our copays are high.  But I'm thankful to have it.  If I keep saying it, I'll be reminded of the blessing and not the cost.  Maybe.) 

I have some knowledge of "the business" from my previous job and understand how premiums are quoted around here.  Most quote on overall health of the group, but one quotes primarily based on overall age of the group.  Guess which one we've always ended up with, no matter what our employers initially had?  Yep.

I'm the "black widow" of group health insurance.  Ever since I was branded with that 340 dx code 8yrs ago, I've had to switch plans/ins co's more often than I can count.  And so have the employers under which I was insured.  When an ins co sees "340", they have to calculate.  Even though I'm not receiving care at this time, they calculate as if I will.  Ugh.  Even they play the What If Game.  I so hate that game.

Sorry, employers.  When you let me into your treehouse, you need to come to grips with the fact that your white ins cards with the black trim, or the red/white/blue trim, or your aqua card w/black trim...are eventually getting switched to the white card with royal blue logo at the top.  It's great stuff and all, some of the best the industry offers!  But change is uncomfortable.  And for that, I am sorry. 

Can you tell I have a bit of a complex?

Health insurance...what's in your wallet?  Here's mine.