Fibro Follies, Part One

I didn't know what to call this post, so I settled for the above title.  ...Meh. 

If you have any quippy, funny, smarty-pants ideas for future post titles on the topic of Fibromyalgia, I'd love to hear them, my darling, precious 4 remaining readers.

I received a few emails after my post the other day (about the pain I'm in), as well as a comment or two here, and I wanted to clarify a couple things.  I hope those of you who wrote me personally won't mind if I answer here... ???  I'm busy lazy and it's easier.   

If my goofy health and/or Fibromyalgia is of zero interest to you, skip this one.

For starters...  I think one or two of those who emailed may have missed this post where I finally "came clean" about my struggle with chronic pain.  This is not a new situation, nor is it an undiagnosed one (although I'm not 100% convinced the diagnosis is accurate, but you can read about that here). 

Thanks for your concern and prayers.  There's no reason to worry about me, but I wouldn't exactly complain if you kept the prayers coming.

Now...  As to the "you sound really depressed" issue.  Do I?  Do I seem a little down?  Huh.  I can't imagine why that would be! 

Sorry.  I'm done being a smarta*$ now.  I do appreciate your input and I don't mean to make fun.  You know me.  I'm a snot. 

Yes, I feel a bit depressed at times.  BUT, I can assure you any depression I'm feeling is the RESULT of the pain I'm in and whatever is making me sick, and NOT the CAUSE.  This is not one of those "chicken or the egg" things, open to debate.  I have no doubt which issue came first- the pain and fatigue.  It is very, very, very, very hard (I hope that was enough very's to make my point clear) to feel upbeat when:

1. You HURT all the flipping time.
2. Your daily routine- no, your entire life- has been totally turned upside down, and there's not a darn thing you can do about it.
3. Your ability to be productive, feel useful, and even interact with your kids has been shot to he**.

If I may elaborate on that third point just a bit...  I have always (even years before getting "sick") based my self-worth on my productivity.  Meaning: How clean can I keep my house?  How well can I keep up with laundry?  How much "quality" time can I spend with my kids?  And even- How smart are my children (not entirely under my control, I know, but being a homeschool mom means even that is a responsibility I carry on my shoulders)?  

If I'm not living up to my own twisted standard of being the perfect mom, I start to feel down on myself.  I've always known I expect waaaaay too much from myself, but that's how I am, just the same.   I am trying to cut myself more slack now that life is "different," but, right or wrong, I've always considered myself useful when I can look around and see all the worthwhile things I've done.

And now?  I don't do anything useful.  At least that's how it feels to me.  I don't clean.  I'm not outside playing with my kids.  I rarely cook.  If I do, it's exhausting.  For example, I burst into tears the other day because I was making dinner and trying to slice through a stick of butter but I wasn't strong enough to do it.  My shaking hand and weak arm couldn't do it.  My collar bone was screaming at me; begging me to stop.  Darrell had to take over.  It was BUTTER, for Pete's sake. 

So yeah, there's some depression sneaking in there.  However, I do not consider myself a depressed person.  There's a huge difference, I think.  I don't think I "suffer" from Depression.  Any suffering I'm doing is from physical pain only (and I really don't like using that word- "suffer"...  Parents who lose a child suffer.  Captured soldiers suffer.  I just hurt).

I understand that Fibro is not a widely understood condition, so I don't get offended when you toss out ideas like the depression thing.  Don't worry about offending me.  Why on Earth would I be offended by a caring friend?  Again, thanks...  But, I'm good. 

I also do not think I'm suffering from a stress-related pain "disorder" (I think I also got a comment or an email about that).  The way my last post was worded could have easily been interpreted to mean that my pain and stress level are linked.  In fact, I apparently gave my mother the impression that her impending visit was causing me more pain (Whoopsie!  Sorry, Mom. 8( )!  Not what I intended to say at all!  This recent pain flare-up started before we heard mom was coming, and before the water pipes broke.  I was just kind of chillin' and minding my own business, then BAM!). Truthfully, I would be thrilled if Fibro was brought on by stress!  That would mean two things:

1. During times of low stress, I would be pain free.  I would LOVE that.
2. I could anticipate and prepare for pain flares when a stressful event was coming on.  That, too, would be awesome!  As it stands right now, there is absolutely no rhyme or reason to my flare-ups.  I can't predict when it will happen.  I've had to cancel many, many events I looked forward to because of it, and fake my way through others I couldn't cancel, while I felt like I was dying.  It would be so much easier, from a scheduling standpoint, if I could predict a flare-up.

Now, to answer another emailed question ("What does it feel like?")... This is the part I hate describing, because I fear sounding like a big pansy.  I don't want to come across like I'm exaggerating for effect, and I'm certainly not trying to complain, get sympathy, or throw a pity party.  I'm just answering your question as honestly as possible, okay?  Okay... 

Fibro pain is in the bones and muscles.  I have "spots" that hurt all the time, as well as areas that don't bother me much until a bad flare-up hits.  The daily pain level ranges from something akin to a really bad bruise- only painful upon pressure (I like the times when it feels like a really bad bruise.  Those are what I consider "good" days), to a pulled muscle, a sprain, an arthritic joint, and even sometimes like the day after exercising too hard- sore and stiff.  Then, I also have "flares" when certain spots become extremely painful for God-only-knows how long.  When I'm having a flare-up, the pulled muscle feeling becomes more like a broken bone feeling, or an "Oh dear Lord, there is a metal spike being driven into the middle of my shoulder, hip (etc)" feeling.  Right now, my left collar bone and shoulder area feels "broken" to me- it's almost not functional.  The pain is a constant, sharp ache.  The other collar bone aches (and I'd probably smack you if you touched it-lol), but doesn't feel as "debilitating," so the pain doesn't always affect both sides equally.  There is stiffness and weakness involved. Sometimes the weakness makes me shake.

It seems to be a "spreading" kind of thing.  Meaning, as recent as a year ago, my collar bones didn't really bother me at all.  The year before that, my elbows weren't affected.  I guess you'd call it degenerative, maybe?  That makes it sound so serious, though.  Like I have a horrible disease.  I don't mean to make it sound that way, but I think it's pretty common in most Fibro folks that it continues to worsen and affect more of their bodies as time goes on.

There is also an extreme fatigue component, so it's not just about the pain.  I feel worn out all the time.  There is never a time when I feel refreshed and rested.  Never.  And I don't sleep well.  I've given up on hoping for sleep.  I haven't slept normally since I started getting sick.  I talked about all that before, though- in that previous post I mentioned above.

Oh, and yes- it does hurt to touch me.  I used to love Darrell's back rubs.  Not anymore.  I cringe when someone approaches me for a hug.  If you accidentally "tap" my elbow, I might jump out of my skin.  I used to think of myself as having a pretty high threshold for pain... well, actually I still do, but it wouldn't look that way to you.  To an outsider who can't see any reason I'd be in pain (no black and blue marks, no bones jutting out of my skin, no red, swollen areas, etc), I'm sure I appear to be very wimpy and jumpy over the littlest thing.

This is getting long, so I'll cover the other questions I was asked soon, in a Part Two.  If you have a question, feel free to ask and I'll try to include the answer. 

Pillow Talk

This is an honest-to-goodness conversation I had just moments ago with the Samster...  God help me.

Me (with eyes closed- trying to look asleep- and jaw clenched): Mommy's getting mad, Sammy.  Go to sleep.
Sam: Okay.
...
...

Sam:  I patting yuhs arm, Mom?  I pat yuhs arm.  ... That nice, Mom?  I be nice, Mom?
Me:  Yes, that's nice.  You are very nice.  Mommy is still getting mad because you're not trying to go to----
Sam: BOOP! I gots yuhs NOSE, MOM! (laughs)
Me: Yes, I noticed that.  You have quite the sharp fingernail, there.  Is Mommy bleeding?  Is my nose blee--- can you let go, hon?  You're seriously hurting me.  NOW, please. 
Sam: HAHAHAHA! (I assume he's laughing because my voice sounds all nasal and funny, not because he's hurting me.  He let go.)
Me: Thank you.  No more talking.  Go the... to sleep.  I MEAN IT.
Sam:  Okay.
...
...

Sam: You get yuhs own widdle baby chicken.  On yuhs own widdle baby plate (these are lines from a tv commercial he loves to repeat...  at 11:00 p.m., apparently)
Me:  I stopped drinking before having children.  Did you know that, Stinkleton?  Sometimes I question that decision.
Sam: Drink?  I has a drink?
Me: No.  Sleep.
Sam:  I not tie-yud.
...
...
Sam:  You tie-yud, Mom?
Me: God, yes.  Samuel ROBERT, it is after 11:00.  I want you to stop talking and GO------
Sam: Eight, nine, ten, ewebben.
Me: SAM!
Sam: (fake snores, eyes squeezed shut) Nigh-night (more fake snores).
Me: Night-night.  That's my good boy (I kiss his forehead).
...
...

...
...

Me (thinking to myself): Thank God.  I think we're in the clear. 

...
...

Sam: Yeah.  I good boy.  ...I good boy, Mom?

Me (to myself): You've gotta be kidding me.

What a week I'm having...

This is going to sound like a Complaint Post, but it's not.  It's simply a recap of the past week.  If it's whiny, I'm oh-so-sorry.  I'll try to say something happy at the end to balance it out.

Last week, I started feeling a pain flare coming on which was concentrated mostly in my left shoulder, collar bone and down my arm.  Several days into it, my arm wasn't working well, and I realized I wasn't going to get much accomplished around the house... or anywhere else for that matter.  I'd had a rough and busy 4-5 days anyway, so I decided to take a day off and hope the pain got better.

This is around the time I found out we will soon be having out-of-town visitors. 

Of course. 

These are the kind of out-of-town visitors for whom you scurry around like a psychotic person.  The kind whose impending arrival can cause you to spew every form of hateful commentary at your precious children.   But, and this is important, we're very happy they're coming.

As the days went on, the pain continued to worsen.  It moved up my shoulder muscles into my neck and down my arm to my elbow.  My left arm is currently a useless, dangly accessory (and have I ever mentioned I'm left-handed?).  It completely ignores my pleas to function and do something useful. 

By the way, in case you ever need such information, I've found that yelling at an appendage to "Pick up that rag and scrub, DA##IT!" is a fairly futile activity.

I made it very clear to my family- in that sweet, loving way I have- that I need as much help from them as possible to get this house in order for company.  "ALL HANDS ON DECK, DA##IT," became the mantra of the week, spoken in sugary tones of maternal love and devotion.

There's been a lot of "DA##IT" around here this past week.  I'm sorry.  I'm not a perfect mom. 

Sometimes, I just think it's fun to state the obvious.

A couple days into the ALL HANDS ON DECK frenzy was around the time I found out from the Water Meter Reading Guy that we have used over 13,000 gallons of water already this month, so there must be a leak in our pipes. 

Of course. 

There went all that "help" I was supposed to be getting.  Darrell had to rent a big yard-digger-upper thing and use all the boys to search for and then repair the leak.  And, oh- snort- did I mention- ooohahahabwaaahaha- that I also forgot to record a BIG check I wrote, so we actually have waaaaay less money than I thought we had?  I didn't?  I can't believe I left that out, because it's a- hahahahaha- really important detail- mwaaaahaha.  I've totally screwed us for the week month!!  I don't know how we'll catch up! Wooo, boy- hahaha!  How's that for a knee-slapper? 

The "missed" check, on top of the rental fee for the yard-digger-upper thing, on top of the huge water bill we'll have to pay for water we didn't even use, oh and- HAHAHAAAAA- the overdraft fees from the bank!!!  I forgot the overdraft fees we're going to have!  You mix that all together in a big 'ol vat of crazy and what do you get?  Huh?  Do you know? 

You get a huge, writhing-in-agony, half-paralyzed cow, who cries and laughs at the same time and shouts unsavory words at her beautiful, angel-faced babies who are only trying to help.  You get an earsplitting "I CANT TAKE ANOTHER SECOND OF THIS CRAP, DA##IT!" when you tell me we're out of ice cream.  That's what you get.

Darrell and the boys did get the leak repaired (we hope), and they all pitched in around the house yesterday and got a lot done.  Which is awesome.  No complaining there.  However, there is still MUCH to do, and the fat half-a-plegic feels no more ready to scrub or shop than she did last week. 

There's also been the fun little plot twist regarding my toe.  Have I mentioned my toe?  No?  Probably because it would be in poor taste to tell you about my toe.  You'd be really grossed out to hear how my ingrown big toenail on my left foot was hurting so bad that I ended up going after it like Jack the Ripper on meth just so I could walk, and now it's, uh, worse.  Way.  Waaaay worse.  I've hobbled myself.

Kinda funny that I was trying to do an in-home surgical procedure to avoid the cost of going to the doctor, and now I've pretty much guaranteed that a Dr. visit will be absolutely necessary if I want to put any weight on my toe ever again.  Yeah.  That's so, so funny.

Speaking of doctor's visits...  Did I tell you I found out the infection I had in my eyes is the kind of thing that will keep coming back?  I'll always have problems with it.  Oh, Man!  BWWAAAHAHAHA!  It just keeps getting better, does it not?   Oh, wait- I didn't mention that the eye drops are over 70 bucks a (tiny) bottle!  That's the ree-hee-healy funny part.  Not to mention the joy I feel over hearing the words, "Unfortunately, this is something you'll just have to learn to live with," EVERY.  SINGLE.  TIME.  I go to the doctor these days.  How is it possible that all these chronic, recurring conditions have chosen me for their very own?  Huh?  Seriously.

So, anyhoo... what was the original topic?  Oh... Our visitors come next Sunday.  I have one week to do a one-armed, thorough cleaning, catch up on all this dirty laundry that's cluttering the floor, and shop for "company food" (meaning, I don't want to serve PBJ's and chips).  One week.  Yeah, not gonna happen.  I move like a turtle these days.  One week is not enough.  It's just enough time to do a half-a*$ job of it and stress and cry and throw an enormous pity-fueled, expletive-heavy fit in the bathtub, where the kids aren't around to listen, but it's not enough time to make the place sparkle. 

My sparkle days are done, I'm afraid.  And that "clean house" smell I once loved so much?  That smell of lemons, bleach and windex?  That's been replaced by cat pee.  "Welcome, visitors!  Please, come in and relax.  Take a deep, cleansing breath of cat pee!  Aw... the sweet, sweet smells of home."

And oh, yeah...  next Sunday is Father's Day, too- so I also have to run out and get something for the kids to give their dad.   Hahaha.  I have to find a good gift with no money.  "Happy Father's Day, Darrell!  Please accept this can of Pepsi and beef jerky from the gas station.  Live it up, hon, you've earned it!  Sorry if I got a little bit of eye goop on it, there.  Better than the goop from my toe.  Enjoy!" 

Gee whiz, all we need is a trailer, a crawdad on a stick, and a can of Pabst Blue Ribbon to make my Redneck Nightmare complete.

Wait...  I promised to end this post on a happy thought, didn't I?  Let's see...  something positive...  some. thing. positive...

GOT IT!! 

I'm not married to Anthony Weiner!

Standing at the corner of Overwhelmed and Emotionally Exhausted...

"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.  ...Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. " 2 Corinthians 4:8-9, 16

If you're my family or friend, you know how close we were to the recent tornado that hit Joplin, MO.  If this is the first you're hearing of it, I guess now would be a good time to tell you that we live really close to Joplin, MO. 

I keep feeling like I should say something.  Tell you guys about it.  I've been completely absorbed by it and haven't really thought of much else, but I don't know what I want to say.  I doubt I could tell a story that isn't already floating around out there somewhere, or show a picture that hasn't been shown on FB or the Internet.

In fact, that photo above is the only one I'm going to post.  Not only because I imagine you've already seen them.  But mostly because none of the pictures can come close to showing you how devastating the storm really was.  I do not mean this to be snotty, but if you never knew the pre-tornado Joplin, you just won't get it.  You don't have a clue.  Cameras have lenses, but they do not have eyes.  They don't SEE. 

Just as it can't be captured properly on film, it can't be summed up in a thousand words or less, either.  Looking at this much destruction honestly sucks the words right out of your head.  There are no adequate words.

When you are driving through a town you know so well, and suddenly you can't even be sure what street you're on because there is nothing recognizable or familiar to you (even though you're sitting at a major intersection)...  That's when you get it.  That's when you see.  Watching people stumble around in their "yards" that look more like nuclear testing sites, with blank, zombie-like stares...  You see it then. 

We're about a 10-15 minute drive from Joplin.  It's the closest "big" town to us (with a pop. of roughly 50,000, compared to my own Redneck Crossing's 5,000).  It's where we shop, go to movies, or go out to eat.  I'm there at least once a week, usually more.  And you know what?  I love it.  I didn't know that until two weeks ago, but I do.  I love Joplin, MO.  I thought I hated it.  While I've enjoyed raising my kids in a small town, I've always missed little bits of the life I left behind years ago. 

I thought of Joplin as a pretty poor substitute for 'city life' whenever I was in the mood to shop or attend cultural events.  The first time I drove over there to shop, some twenty years ago, I remember thinking my life was turning into a bad remake of "Green Acres."  And fine dining?  You eat at a restuarant that has peanut shells on the floor and, by gosh, you like it.  In fact, those kinds of restaurants became my idea of a cultural event. 

Little did I know, Joplin had somehow managed to worm its way into my heart.  It's home.  Peanut shells and all.

We have friends who live or work there- some own(ed) businesses there.  For the most part, our small circle of friends is "okay," physically.  We do know quite a few people who lost a loved one, their own home, or are now out of work.

I believe the most recent number given of those who died (and I'm hoping this is the final count) stands at 141.  And, while I know this is the most unoriginal thought ever, the craziest thing to me when I'm looking at the crumbled buildings and empty slabs where homes once stood, is not that this storm killed 141 people- it's that it only killed 141 people.  I'm truly amazed that there are so many survivors.  You look at these heaps of rubble and think, "Someone actually crawled out of that?"  If it would have happened on a week day?  I don't even want to think about how high that number would have been.

When the tornado hit, I was cooking dinner and watched it touch down on TV.  The weather guy said there was a confirmed tornado on the ground in Joplin  and I was honestly a little relieved.  I was thanking God that this really bad storm they'd been calling for all day appeared as if it was going to miss us.  I kept cooking dinner. Of course, I didn't know yet.  Obviously.  I may be a self-centered, crappy person, but I'm not that self-centered and crappy.  The tornado was "rain-wrapped," so you couldn't clearly see the destruction as it was happening.  Living in this area means you hear of tornado sightings all. the. time.  Tornado watches and warnings are just a part of life.  You get a little desensitized, I guess.  You just assume everything will be okay.

I've thought a lot this past week about those first moments- about how, as over one hundred people were losing there lives and hundreds more were losing everything they owned, I was casually watching, feeling relieved that my family's dinner wasn't being interrupted.  I was glad that, for the moment anyway, I didn't have to turn off the stove and go sit in our shelter where I'd have to reassure my kids that we'd be "just fine, honey" (while simultaneously having a claustrophobic FIT and feeling like I definitely will not be "just fine, honey").

 (I hate that shelter, by the way.  Have I mentioned that before?  I thank God we have it, but I hate it.  My fear of being trapped in the shelter is right up there with my fear of tornadoes.)

It was a few hours into the evening before we really realized that the situation in Joplin was "bad" (ummm... keep in mind here that I'm trying very hard not to overstate things, embellish, or otherwise pack this post full of repetitive, obnoxious superlatives- so if I err, it will be on the side of understatement.  And calling the situation "bad" is a definite understatement).

As soon as the news reports started coming in, the emotional overload began and it hasn't stopped.  I've burst into tears every. single. day since May 22nd- and I wasn't even involved.  I can't imagine how much stronger that feeling of "overload" is for the people of Joplin.   It hits hardest when you're over there, looking at it, but every little thing- TV, FB, an email from a friend, triggers an unstoppable flood of tears.  I keep wondering when that will end and why it's overtaking me so completely when I wasn't even directly affected. Do you all react this strongly to these kinds of things, or is there something wrong with me?

It's taking a toll on the kids, too.  If you were reading this blog in May 2008, you may remember the tornado we were in then.  I think I shared at that time that several of us, me included, were struggling with a lot of fear, anxiety and nervousness over every little raindrop.  It had a long-lasting effect on us that wasn't gone by any stretch, and now... 

One of my kids is so freaked out, I really think he may benefit from some professional counseling.  I'm getting worried that this latest disaster, on top of the residual fears from 2008, has scarred him for life.  And I'm not kidding.  He's been asking if we can sell the house and move.  This is the only home he's ever known, yet he'd walk away from it today if I said we could. I'm trying to make him understand that almost every part of our country has the threat of some type of natural disaster.  If it's not tornadoes, it's hurricanes, earthquakes, wild fires, or floods...  He's still willing to take his chances somewhere else (if anyone happens to know, right off the top of her lovely noggin, which state is least-affected by natural disasters, I'd love to hear it).

The aftermath of the tornado puts the phrase "emotional roller-coaster" to shame.  It's all just too much.  The destruction and chaos.  The losses of life and property.  The survivor's first-hand accounts.  The stories of those whose lives were just beginning and now they're gone (like Will Norton, who was just leaving his high school graduation with his family.  The tornado pulled him from their vehicle, despite his father's efforts to cling so hard to his son that his arms were injured.  Or Harli Howard, age 5, and Hayze Howard, 19 mos, who died with their 29 yr. old father, Russell, as he held them in his arms, trying to keep them safe.  They were all laid to rest the other day... together, exactly as they'd been found- the two children in their daddy's arms). I find myself grieving for these people I didn't even know.  

There are the good stories too, of course.  And, thankfully, we're hearing more and more of those every day.  Joplin is jam-packed full of heroes, as far as I'm concerned.  If you watched the coverage of the memorial service last Sunday, you may have heard Obama, Gov. Nixon, and various pastors mention the sense of brotherhood and community here.  Everyone is helping.  Well, almost. There are the jerks- looters, the people of Westboro Baptist Church (which is a post for another day), one or two obnoxious people who seem to think we're in some kind of tornado contest and Joplin wasn't "anywhere near as bad as Tuscaloosa" (which is not accurate, by the way). But they're the crappy exception.  Catastrophes bring out the worst in some, but the best in most.  People are coming by busloads from other states to help. It feels as if everyone cares. Everyone is giving as much as they can of their time and money.  You see hand-written cardboard signs all over town, saying things like 'FREE MEALS SERVED HERE,' or 'WE HAVE SUPPLIES.'  Everywhere you look, you will see hordes of volunteers, shovels or chainsaws in hand, wiping the sweat from their brows.  The donations and volunteers started coming the very night the storm hit and they continue to come.  Everyone is going above and beyond.

That, too, is like nothing I've ever seen before. It gives us all so much hope.  While I'm sure the city will accept and appreciate whatever help it gets, no one is sitting around waiting for the government to swoop in and rescue them.  These "Show Me" Staters are showing everyone how it's done. 

I'm so, so proud of my small-town, Midwestern, crap-kickin' corner of the world, and even prouder to be a Missourian (by birth.  I'm only a Kansan by marriage ;P).  And I'm proud of Joplin, my town.  The town I love.

Please, please keep the people of Joplin in your prayers.