I'm too lazy for three debilitating disease's.

I've been seeing this horrid, horrid picture going around on Facebook.  Um, yeah, said the chick with M.S., and Fribromyalgia, that's who in the heck said it.

There's this awful lie being told by doctors everywhere; exercise is good for M.S. and Fribromyalgia.  I know, load of crap, right?  :)  I hate that it's true.  When it was just Fribromyalgia, and my doctor would tell me that working out helps ease Fibro pain, I was like, okay, smile and lie that you'll work out.  I knew it was good for me, of course working out is good for you, it's good for everyone.  I was so freaking tired, though, and in so much pain, it just wasn't worth it.  Learning that exercise will actually hinder the progression of a deadly disease, M.S.?  Now that's just not fair.  I hate working out.  I PASSIONATELY hate it.  This wasn't always the case.  Rewind just four years ago.  Working out was my life.  It was my drug, so addicting.  I couldn't go a day without working out.  This was after two pregnancy's, too.  Before that, I was eating so incredibly healthy, working out to intense workouts, two hours a day.  Now fast forward, add a stupid head disease, Fibromyalgia.  Now you hate the thing you used to love more than anything.  Not okay.  I hated Fibro's guts for taking that way from me.  Not only that, but it also caused me to eat crap, too.  When you can't even lift your arms, you're going to stuff your face with whatever's fast, and whatever's going to give you energy; bingo, carbs!  Now I eat like a whale, and I never move my body.  It's a freaking good thing my body's amazing at staying skinny.  I'd be in BIG trouble.  My weight is low, I look good for being a fatty at heart.  It TOTALLY sucks M.S. had to enter the picture, though.  Stupid, stupid M.S.  I was perfectly fine being the skinny fat arse.  Sucks I actually have to act like a skinny person now.  That pisses me off to no end.  I LOVE food.  I love crap.  What's hilarious, is that if my old self saw this version of myself only four years into the future, I'd be so grossed out with myself.  It's funny how much I've changed.  It's funny how much my priorities have changed.  Four years ago, it was all about being skinny, healthy, and looking good.  Today, it's not dying.  That's it.  That's my goal for now.  Not dying prematurely.  For that, I am indebted to Fibromyalgia, and M.S.  You don't understand the saying, "youth is wasted on the young" until you're old, or dying from a disease.  :)  These disease's have totally changed my attitude towards everything. Who's got time for beating around the bush?  Who's got time to waste on idiotic people?  Who's got time to work out for fun?  :)  Working out now is the hardest thing I've ever done.  What a challenge.  Putting one foot in front of the other may kill me faster than M.S. will.  It's really hard.  My coordination skills are pretty interesting.  I'm mad that I have to work out, 'cause it's so darn hard, and so darn painful.  However, I am so grateful I'm still able to do it.  I'm grateful I have tools to help me stave off this deadly disease for as long as I can.  I'm very grateful for a perfect husband who's taking such good care of me, and this family.  I'm grateful he jumps to it when I say, "take your old lady walking."  I wouldn't have the strength to walk alone.  Right now, all I can think about is a juicy steak and staying in my nice, warm bed.  Hooray for best friends.  Hooray for still having the coordination to walk.  Sometimes.  It's a work in progress, but at least it's still an option.

Hee hee, it's true.

♥

'Cause what's prettier than orange?

Besides purple of course!  Of course.  So besides purple, I love orange.  I have a faux ostrich bag that's ginormous and orange.  I love to wear orange, I love to see it, orange is just a really great color.  So I've said that purple is the official color of Fibromyalgia.  I adore purple because it represents fighting Fibromyalgia.  So if I was gonna add another disease to this, what color would I add?  Orange.  Hands down, I'd add orange.  Well, add orange I did.  Can't be caught dead with an ugly color, right?

On Friday, I got the shock of a lifetime.  I have Multiple Sclerosis.

You see, what I didn't know, was that 1/3 of people with Fibromyalgia start to feel better.  1/3 of people with Fibromyalgia stay the same, they don't progress in the disease, they don't get better in the disease.  So what about about the final third of people with Fibromyalgia?  You got it, we're the ones that progress into something worse.  Multiple Sclerosis.  No one's quite sure why Fibromyalgia is the beginning of M.S., but it is.  Fibromyalgia is often referred to as "baby M.S."  Dude, how could I not have known that?  With all my research, I didn't know that.  You've heard of M.S., you've heard it's bad, you've heard it's an auto-immune disease.  You never really hear that Fibromyalgia can lead to it.  Having Fibromyalgia, I've always feared M.S.  Once you have one auto-immune disease, the chances of getting another jump up significantly.  I did know that, I didn't know Fibromyalgia was "baby M.S."  I was scared of getting M.S. 'cause you hear it's bad, and you know your chances go up because you're already sick, but really?  The two are closely related?  I had no idea.  So what now?  Yeah, the idea is still the same.  There's the percentages of people who stay the same, then there's those that advance into something worse.  Kinda makes you wonder.  If I was one of the lucky Fibrotics to advance into M.S., does that mean.....?  I dunno.  All I know is that I'll fight like hell.  I'm not an easy person to take down.  Sure, I need help washing my hair, tying my shoes, um, pooping, I don't know, I can't remember what I need help with.  I need constant help now.  Besides all that, I'm fighting pretty hard mentally.  I have four small children, and a perfect beyond perfect husband.  That's a whole lot to fight for.

It's almost a relief to have M.S., ya know that?  I was getting really tired of people saying, "well, I have Fibromyalgia, and if I can do it, so can you."  Or, "Fibromyalgia's something you can overcome.  I know someone who did."  Guess what?  You don't know anyone who's overcome M.S., do ya?  No one really gets better with M.S., and I can't even tell you how many people have said, "I know someone who died of M.S."  He he, thanks.  That's exactly what I wanted to hear.  Besides that, it's nice to know that something was found, and I knew my symptoms were a little more extreme than most people I know with Fibromyalgia.  I almost find a sense of peace, as bizarre as that sounds.

So what is Multiple Sclerosis?  M.S. as it is commonly called, is a disease of the brain, just like Fibromyalgia.  So it's true, just like I told you.  I have severe brain damage.  :)

M.S. is an auto-immune disease.  It's an auto-immune, because yeah, you got it, it attacks itself.  Our brain transmits messages all the time along our nerves.  Surrounding these transmitters are what's called Myelin.  It's a nice, warm blanket that surrounds our nerves.  It's what keeps our messages in.  If we didn't have that protector, the messages from our brains would never make it to their destinations.  It would be like taking a train off its tracks.  Without train tracks, the train can't go anywhere.  Without something to hold it in place, messages that get sent from the brain never make it to where they're going.  In Multiple Sclerosis, that's exactly what's happening.  The Myelin sheath around the nerves in our brain have eroded.  Messages are no longer received.  That's why people with M.S. can go blind, become paralyzed, or can't walk straight.  The nerves can no longer do their job, receiving or transmitting messages.  What's more, is that the body sees the damaged Myelin sheath as an invader.  It attacks the Myelin and nerve, making everything worse.  That's why M.S. is an auto-immune disease.  My body is attacking itself, NOT the foreign object it thinks it's attacking.    

Here's a video that illustrates exactly what M.S. is:

So there it is.  Yes, I still get to rock the purple.  I still have Fibromyalgia.  I just get to rock orange now, too.

So it's no wonder why I'm so tired.  That's a lot to rock out to.

If you have Fibromyalgia, stay on top of your symptoms.  M.S. is a provable disease.  I know starting out with Fibromyalgia can make you really weary of doctors, like me.  But Fibromyalgia has a very good chance of turning into M.S.  No, it doesn't change my symptoms, it only added a new name to what I've been feeling.  It does shake up the treatment plan a little more, though.  Do your research, and be aware of your body.        

Alive and living. Two different words. Two different meanings.

Purple is the official color for Fibromyalgia.  The butterfly is the official symbol for Fibromyalgia.  This picture and quote speak volumes to me.  I can't wait until we get a little more money rolling in.  I adore art, and I have a feeling there might be a lot of purple, flittery things hanging in my house in the near future.

I don't know who painted this, but I'm SO needing this for my house.

 "Just living is not enough," said the butterfly, "one must have sunshine, freedom, and a little flower." - Hans Christian Anderson.

There are so many who can't understand why it's hard to be happy when you have Fibromyalgia.  We're not wishing for the moon, all we want is what you have.  Living just to be alive isn't living.  When you can't go anywhere, do anything, you can't even take a shower without wanting to die, the word "living" takes on a whole new meaning.  You're alive alight, but you're a prisoner to your own house, to your own body.  That's not living.

I want so much more.

I want so much more than this.  I want so much more than getting tired after taking a shower.  I want more respect, I want more understanding.  I want so much more.  I don't fear life.  I'm ready to take it head on.  I can't, though.  I'm not allowed to.  I try doing anything and my body fails me.  Why are people so shallow and take this as a sign of laziness or weakness?  How strongly they misjudge me.  How strongly it cuts me.  I find myself only being able to acquaint with those who know pain.  I used to be such a social butterfly.  I could make conversation with anyone, anywhere.  Now I feel ashamed, scared, alone.  The only people who 100% don't judge me, are those who deal with insane amounts of pain themselves.  These are the only people I feel comfortable with anymore.  

You know when your friend gets pregnant?  That's ALL she can talk about!  "Did you know pregnant people fart three times more than you?"  "My hormones have been SO crazy!"  "Oh my gosh, it's SO HOT IN HERE!!"  EVERYTHING all of a sudden seems to revolve around her and her crazy hormones.  All she seems to talk about anymore is how much she sweats.  People getting married, people having babies, people in school, joggers, Democrats, Republicans.  Aren't the friends you make heavily involved in what you're doing, too?  You find you're not as close to your pregnant friend anymore.  You're single, she's married, she's having a baby, you don't have kids.  What in the world do you have in common anymore?  That's exactly how pain is.  It's an annoying pregnancy that never goes away.  Pregnant people are ALWAYS talking about their pregnancies, they're always thinking about their pregnancies.  Pregnancy sucks.  It hurts, it's uncomfortable.  You're not really loving the new shape your body's taking.  It's hard not to obsess about something that's taking over your life.  Menopause, pregnancy, your wedding, a new boyfriend.  Whether it's a good or a bad thing, it's totally taken over your life for the moment.  How crappy would it be to have something take over your life, but it never lets go?  Getting married is exciting, but no doubt stressful.  Imagine never getting married but staying in that wedding planning mode for the rest of your life.  Being that bridezilla for the rest of your life.  Being pregnant for the rest of your life.  Going through Menopause for the rest of your life.  Imagine being that stressed out, that consumed by the one event in your life, forever.  As much as pregnancy ravages your body, and as much as it hurts and sucks, you know it's over in 9 months.  Fibromyalgia is getting pregnant and never getting to give birth.  It's Menopause that never ends.  So while you get to alienate your psycho friend just until she gives birth, imagine everyone alienating you because of your condition?  Not for the next 9 months.  Forever.  

No matter what situation you're in, isn't it SO annoying to having everyone give you advice?  "You should totally get married in June, what a romantic month!"  "You should have a natural birth, get an epidural, have your baby on my birthday, breastfeed, bottle-feed."  Holy crap.  You're gonna do this your way.  You're not an idiot.  You know what works for you, yet everyone and their dog has advice for you.  It gets a little old, huh?  Imagine having a disease that you've researched the crap out of, you've seen every specialist for, and um, you've been living with it.  That would mean you know more than someone who "read this article somewhere about Fibromyalgia..."  Just like your Aunt Mary loves you and is suggesting you drink a gallon of castor oil to induce your baby, friends are only trying to help with Fibromyalgia.  It gets annoying though, huh, all that baby advice?  Yeah, same here.  The only people who haven't tried suggesting something to help with this, are the friends who have debilitating diseases as well.  Just like getting together with all your knocked up friends and eating ice cream, talking about all the crazy non-pregnant people, sick people do the same.  We get together with our drugs and rice packs and talk about all the crazy non-sick people.  We laugh at the advice we've been given.  We laugh at the new changes our body's are going through.  We laugh and cry about our trials and our successes, just like a knitting club.  It's people coming together, understanding each other on a level no one else can. 

I SO don't get avid runners.  I don't get how people "live to run."  It would be hard to be friends with someone so committed to moving, when I can't even take a walk without my body killing itself.  I would never give a runner running advice, even if I did read something in "Runners World."  When you're that consumed by something, you become an expert on it.  Runners have read, heard, and researched it all.  It's so nice just talking to to someone with a headache as big as yours.  It's so nice someone gets going to bed at 7.  It's SO nice to have a friend who would never judge you for not feeling well.  Who would never try to push your limits.  A lot of people think Fibromyalgia is something that can be cured, healed, or "snapped out of."  It cannot.  If you "knew someone" with Fibromyalgia who suddenly got rid of it, they never had it in the first place.  Either they were mis-diagnosed, or had something else.  Fibromyalgia is often called the "great mimic", it mimics many other diseases.  There is no known cure for Fibromyalgia.  It can be very hurtful when people give advice about something they know nothing about.  "If you drink Chamomile tea for two years, it'll go away."  It's amazing people think we LIKE having an excruciating disease.  If Chamomile tea worked, we'd have read about it first.  We would do anything.  My friend with an invisible disease had someone recommend she go see a specialist about her "abnormal" headaches.  What GREAT advice!  Man, she must be an idiot, why didn't she think of that?  ;)  Ok, ok, she only see's a headache specialist all the time.  People do and say things because they love us, but you have to understand a pregnant woman has also heard every way to find out the gender of her baby, too.  Hanging a ring over your belly won't tell you the sex of your baby or cure Fibromyalgia.  She's pregnant and hormonal, keep your stupid, horror labor stories to yourself.  We're in a lot of pain, keep your stories to yourself.  It's not that we don't love you, it's that we've heard it all.  It's that we're really annoyed with every Tom, Dick and Mary giving their two cents worth.  We know ya love us.  We know you're only doing it 'cause you're concerned.  But are ya willing to tell your friend she's gained a lot of weight this pregnancy for "her own good"?  Here's my advice, keep ya two cents worth to ya self.  Things are much safer this way.  Nothing worse than a woman gestating, menopause-ing, or dealin' with pain.  The end.  Woe to anyone who dares crossing into frigid waters.

What a relationship's like when there's an invisible disease involved.  On both fronts.  :) 

I won't tell you as a professional makeup artist that "you could look like less of a whore this way", if you won't try to give me "professional" advice on pain.

'Cause let's face it, sometimes that makeup's as painful as Fibro...

It's just not funny anymore.

I forgot today was my anniversary.  Here it is, 10:00 at night.  My husband says, "happy anniversary."  How do you forget it's your anniversary?  You have a debilitating disease, that's how.  I can't believe I forgot it.  I forgot to wish my niece a happy birthday this year.  I even wrote it on the calendar.  If you knew me, you'd know I don't forget birthdays.  You only have to tell me your birthday once, I'd remember it always.  I am notorious for remembering people's birthdays.  Not anymore.  My Fibromyalgia's out of control.  The pain is more than I can take.  The memory loss is more than I can take.  Happy anniversary to me.  Pouting in bed, been fighting with the hubby all day, listening to my kids killing each other, and realizing I'm losing my mind.

The Fibro Fog jokes are funny to a point.  Humor is our way of coping with this ridiculous thing.  It's not funny as it's happening to you.  It's not funny when you're forgetting people's birthdays.  It's NOT funny when you forget you've been married for 8 years today.         

Meet my friend, Jaime.

I knew Jaime's husband before I knew Jaime.  Jaime and I were introduced, and I liked her from the get go.  Jaime was born in the 60's, I was born in the 80's.  Aside from having a few things in common, how alike could two people, from very different generations be?

Jaime's husband had told me his wife had broken her back a year ago and was in a lot of pain from it.  He told me she had Diabetes and Hypothyroidism resulting from her back injury.  My heart sank as he told me this.  Although I am young woman, I have a superior understanding of pain.  I knew that like my husband, Jaime's husband sympathized for her, but until you've felt pain this severe, you cannot possibly understand.  What he described sounded exactly like Fibromyalgia.  My brother broke his back.  He did not feel pain a year later.  It seemed unusual she DIDN'T have Fibromyalgia.  He told me later she went to see a doctor about the pain.  The doctor thought it was Polymyalgia Rheumatica or Fibromyalgia.  I prayed so hard it would be the first one.  The first one hurts, but it's treatable.  You take Prednisone for a while, and it's gone.  There is no  treatment, cure, or hope for Fibromyalgia.  It's for life.  Jaime's husband told me the next day it was Fibromyalgia.  My heart dropped.  I couldn't wish that on my worst enemy, let alone for Jaime.  I felt an even deeper connection as I gave her my condolences.

Being diagnosed is scary.  Being diagnosed sucks.  With Diabetes and most diseases, there's usually a target range.  You're at higher risk if you're African American, Native American, a woman over 40, White, blah blah.... Fibromyalgia doesn't care.  While it does have some "sometimes" and "maybe's", Fibromyalgia doesn't care if you're white, black, blue or purple.  It doesn't care if you're rich or poor.  It doesn't care you're 12 or 97.  It doesn't care if you're a man or a woman.  It doesn't care if you eat well or not.  Exercise six days a week?  Doesn't matter.  There is no safety.  There are no preventative measures.  It is a predator.  No warnings.  There is nothing you can do, but once it has you in it's jaws, it will never let you go.

Meet Jaime:                 

BIO – 2013

Jaime Raffaell was born in Michigan in 1968.  She’s traveled extensively teaching English in Europe before she was 16.  She attended Oxford University when she was 14 on a scholarship.  She attended Oklahoma Christian College where she met her husband of now 23 years. They lived in Oregon, Colorado, and finally settled in Idaho to raise and homeschool their six children.  She is a genealogical historical writer by trade, but works from her home as a Director of Operations for a Seattle based company that specializes in hiring the disabled and American Veterans. 

Jaime was diagnosed with Fibromyalgia in December of 2012.

______________________________________________________________________________________

Jan 2013

“My mommy’s broken again”……Wow there’s a sentence every mom wants to hear when her youngest sees her struggling to get up from the couch.  Maybe there’s a support group…”Hi my name is Jaime, I’m 44 years old and I’m broken again”…  In the past 19 years I’ve broken 37 bones, some even twice (ever get into a coughing fit and break a rib?, not fun).  I do not have a bone disorder.   I do not have weakened bones due to osteoporosis.  I’m basically a klutz with really bad luck...or so I thought.  I am an executive in a nationally known company that hires disabled individuals and helps them set up their work at home offices.  I support the disabled, but I never considered myself disabled.

In 2011 my family was coming to visit our new home.  Excited about our first “company” I decided to steam clean the carpets to make everything fresh from the move.  I was doing fine using the machine until I pulled back and heard a snap.  BAM twinge of pain up and down my spine that would have dropped an elephant.  “Great Dummy you pulled your back out again”…. For three weeks I couldn’t stand upright and sort of just hobbled through my day self -medicating on heat packs, Advil and sheer will.  My 80 year old Grandmother came to visit and offered me HER CANE because I looked like I needed it more than her.  After the visit and company left I decided I couldn’t take it had to see a doc, thinking I’d pulled a muscle and well maybe I’d have to break down and take some muscle relaxers.  I’m notorious in my family for ignoring pain, “ah it’ll go away, I’m fine.”  Yeah I wish it was that simple,  turns out I had broken my back again only this time in four places (with little bone shards showing in the x-ray).  I had been walking around one bad step away from never being able to walk again.  By the time they did the surgery I had been dealing with the constant pain for almost 65 days.  But I never missed a day of work, because that’s not me; my “discomfort” was not going to inconvenience anyone.

Long story short, surgery went fine.  I was walking normally within 2 hours of the surgery.  When I got home I had to learn to take it easy and my kids (all six of them) had to learn that “mommy was broken and you need to help her”.   Two months after the surgery I was hysterical from not sleeping well, my legs had swollen up like an elephants and had tremors that made my husband start sleeping on the couch and I had a constant burning pain in my arms, upper back and shoulders.  I got sent in for more “tests” (don’t we love that word), and was diagnosed with a thyroid problem and diabetes.  But nothing that would tell me what the pain was.  I kept getting told, “your over reacting”.

Ok so ask yourself how does a broken back turn into all that?  Apparently a body can by traumatized by surgery and that’s what happened to me.  So for the past year I’ve been on a roller coaster of meds, and weird pain in places that never hurt before.  But they would not prescribe anything that actually solved the pain problem.

After a year of the medicine roulette, the pain and tremors became even worse.  I couldn’t sit or stand for more than 30 min at a time and I now had to use a cane to get out of  bed in the morning and a rolling walker to get anywhere in my one level house.  I had to set an alarm to roll over every 2 hours or my legs would lock and I’d be screaming.  The most embarrassing thing?  Sitting down to go to the bathroom and realizing you’re stuck and can’t stand up because your legs give out and you fall.  Trust me when I say your 20 year old son does NOT want to hear “help me” coming from behind a closed bathroom door.

Doctors kept telling me “lose weight you’ll feel better.”  Ok I’ve lost 75 lbs and I feel worse, even more depressing my Wii fit age is 93………...93!!!! 

Finally three weeks ago I told the doctor I can’t take this, I’m not a wimp and this is bringing me to my knees with pain in my joints, shoulders, neck, knees, everything hurts.  Dr. Poke n Prod, who’s favorite question was “does this hurt?” decided that, after I threatened to rip of his leg and beat him senseless with it, maybe we need to see if what we’re dealing with wasn’t related to my back injury. 

You guessed it, two days after Christmas I was diagnosed with Fibromyalgia.  Great now what do I do?  I know NOTHING about this disease and he prescribes a medication I’ve never heard of and who’s side effects he described would make my mood swings seem like PMS ON STERIOIDS.  He then asked me if I owned a gun (I kid you not).

So here I am still in pain, taking these psychotic drugs (which by the way if you weren’t depressed before would make you depressed now and causes muscle stiffness).  Every day I take my pain temperature, do I want to hurt someone or just hide in the closet?  I still have never missed a day of work, still grocery shop, homeschool my four remaining boys, support a daughter in college who we drove 3800 miles round trip to deliver to West Virginia last summer when she was in a car accident on her way out there.

What I’ve learned so for is that Fibromyalgia is NOT for wimps.  Sufferers are known to have some of the highest pain tolerances doctors are baffled by.  You hurt so bad you want someone to stomp on your foot with spiked heels just so you have something to laugh about.  Nothing helps, there is no “cure” there is no special pain medicine that makes you all better.  You just hurt, 24/7 even in your sleep.  Some days it’s a dull ache that’s there in the back of your mind as you go through your day.  Other days the pain is so intense you want to rip your own muscles out to make it stop.  But what Fibromyalgia can’t do is take your determination.  Most people who have the disease are looked at by society as weaklings that are just hypochondriacs looking for a pill hand out.  Which ok it might have looked at it that way IF there was a pill that fixed it.  But there isn’t one.  Normal pain medicines (Percocet, vicodin, hydrocodone, morphine) do not relieve this pain.  The Lyrica commercial is just that, a commercial.  There is no dancing freely running through a park in your future.   You learn pain management by dealing with the pain both mentally and physically.  And by pain I’m not talking about a headache, or labor pains or stomach cramps or a pulled muscle.  I’m talking about a type of pain that has you considering surgery with no anesthesia because it would hurt less.   Kidney stones are the equivalent of acid indigestion compared to what we feel.

When you pass me on the street, I won’t “catch your eye” because I’m disabled.  Chances are you would never notice me or even know that I have this disease unless you ask me.  Fibromyalgia is invisible to the world but it’s VERY real to those that suffer from it.  I challenge anyone without it to get repeatedly stung by a taser every hour for 24 hours to get a glimpse of what a Fibro sufferer goes through in a normal day.

We are mothers, fathers, caregivers, working women and men, productive members of society and we suffer in silence because we are FAR from being wimps.  There is no telethon, no national society funded research project with critical acclaim for us.  We are a silent band of our own kind of superheroes.  When you meet someone who has Fibromyalgia, don’t wrinkle your nose in disgust thinking they are whiners, instead applaud their efforts for getting up, getting dressed, getting dinner on the table and getting on with life.  It’s harder than it looks, trust me.

I'm an over-reactor.

I am guilty of over-reacting.  One, I'm a woman, two, I'm a woman, and three, I have Fibromyalgia.  It's REALLY hard to bite your tongue when you're in pain.  Especially when stupid people always seem to find their way to you.  No matter where you go, they're everywhere.  There's an epidemic, I'm convinced it's something in the water.  I have a really hard time not being blunt.  Believe it or not, I've actually become so much better, too.  There was nothing I wouldn't lash out at.  There was nothing I held back.  My husband is the most laid back person I know.  You could send the man to the Middle East, and he'd have them all laughing, signing a peace treaty.  Send me there, we'd nuke the world.  I totally have anger issues, there's no denying that.  I have no problem admitting my faults.  THAT I can do, and I don't understand people who find themselves faultless.  It's those people who really get my blood boiling.

I fart in the aisle and move really fast, so if someone comes down my aisle, they can't associate it with me.  I get "road rage" at Wal-Mart.  I have serious anger issues.  I have no problem admitting I have problems or that I'm humanly flawed.  When thinking about upcoming issues, I will go straight to worst case scenario.  I know a lot of people with Fibromyalgia are this way.  It's a proven fact that most people with Fibromyalgia are type A personalities.  That means we're perfectionists, we love order, we love cleanliness, we love to think, we're analyzers, and  we love getting to the point.  We have a hard time relaxing and enjoying ourselves.  We're always thinking.  Thinking's great 'n all, but there is such a thing as over thinking.  It can't be healthy to always jump to worse case scenario.  It can't be healthy to think that much!  I hardly sleep 'cause my brain is still thinking!  It gives me insomnia, but once I do fall asleep, my brain is still going.  My dreams are SO incredibly intense.  I act them out.  I sleep walk like there's no tomorrow.  It's a whirring machine.  I wish I could channel it for good. Alas, I cannot.  I have not been able to channel it towards anything but putting my foot in my mouth.  Can't seem to stop doing that.  Have you seen the movie "You've got mail"?  Meg Ryan tells Tom Hanks she wishes she knew what to say at the right moment.  When she is finally able to say the right thing at the right time, she regrets saying it.  Suddenly saying what she meant to say, at the moment she wanted to, felt awful.  There are times I do regret saying what I do.  My mouth just opens and spills the first thing on my brain.  Whether I mean it or not, whether I've had time to think about it or not, there it is.  I have become so much better at this.  My husband has been teaching me a lot, I'm just not where I want to be, yet.

Rude people are so infuriating.  I will never understand the need to belittle someone to make yourself feel better.  I will never understand GIVING your opinion when it wasn't asked for, especially when it's negative and or condescending.  This is so hard to avoid when you have family.  :)  Right, who's family does that?  ;)  Weird, I know.  I am trying to learn, but I'm not perfect.  No family is worth keeping around when they're that toxic, though.  I am finally, finally learning this.  You can love your family, have your civil conversations, but there is no need to ask for a good insult.  I've bit my tongue thus far, for my husband's sake, and for everyone else's.  It ain't worth it.  I have a disease.  Family has made my disease worse.  I've given myself a stomach ulcer from a certain rude family member.  It SO ain't worth it.  If I'm important enough to have in your life, you would have treated me better.  Actions speak far louder than words, um, the rude words which you've given me anyways.... he he.  Yeah, there.  See?  Hahahahah, oh mercy.  What I'm trying to say is this; I won't be rude to you.  If you're nice to me, I will be ferociously nice to you.  I'll love you with all my heart.  I love fiercely.  Treat me unkindly, and oh, honey, the claws are comin' out.  I am a very passionate person.  I am passionate in all I do.  My relationships are no different.  I love and hate strongly.  I already deal with a pain in the as*.  Fibromyalgia.  I don't have the patience should you treat me unkindly.  

Eh, just another side of me.  :)     

     

I ♥ my Texas friends.

I wub my Texas friends when they say, "It snowed!  So magical, so fun!"

"Awwww, look, snow!"

And I'm all like, "uhhhhh, really, I am so frickin' excited for you here in barely America, pretty much Canada."

"....Owwww, look, snow...."

The Corley Crew, minus three cats and a husband, in -20 degree weather.

Y'all know I love ya, from the bottom of muh little Southern heart.  :)

It's time for a revolution.

It's time to stop it!

I am in serious need of a revolution.  I abuse my body and my mind.  If you're human, you do it, too.  There's this little minion that lives in my mind, tells me I'm not good enough, tells me I'm not strong enough, tells me I'm not worth it.  It lies to me.  Instead of ignoring it and punching it in the face, like I would do to anyone else saying it to me, I actually listen to it.  Can you believe that?  I listen to it, acknowledge it, then I accept it.  This is crazy, who does that?  ;)  It's not healthy.  This little voice, who I'm entirely sure is Voldemort, has always been there.  He tells me what I should or shouldn't believe, what I can or can't do, what I should and shouldn't eat.  To be honest, I am a pretty proud person.  I don't like being told what I can or cannot do.  So where does Voldemort get off telling me what I can or cannot do?  Really, how stupid have I been to listen to him?  The Dark Lord of Lies?  There ya go.  I don't listen to liars, and neither do you.  You know better, just like me.  Let's take a stand!  It's time to stand up for ourselves.  If we don't, who will?

I want you to tell Moldy-Wort where to shove it, you're so worth it.

Along with poisoning my mind, I'm poison my body as well.  Ya see, it's the skinny b*itch in my mind, it's Fat Albert in my a*s.  He's always yearning for one more donut, one more steak, one more Big Mac.  As much as he likes me, and I love him, I can't keep Fat Albert in my butt anymore.  It's not healthy for me or him.  I have to do what's best for all of us.  I love Fat Albert, I love him with all my heart.  It's going to be so hard to let him go.  We've been really good comfort buddies, bored buddies, feel-good buddies.  Fat Albert can't expect me to eat every time I feel a freakin' emotion, can he?  It ain't healthy.  I'm skinny, I'm not fat by any means.  This isn't my "lose 20 lbs" New Year's resolution.  This has nothing to do with weight, or I'd have a very happy relationship with Al.  This has to do with respecting myself.  Respecting the beautiful temple which I have been given guardianship over.  If you have to lose weight, ok, who cares?  You're beautiful.  Take care of you because you KNOW it's the right thing to do.  Take care of you because you're worth it.  Moldy-Wort and Hey hey hey have no place in your body.  You are better than that.  I am better than that.

I was delighted I could find a "start a revolution" for your body picture.  I couldn't agree more.

Today starts my revolution.  I will love me, I will be kind to me.  I won't poison my body any longer, in any way, shape, or fashion.  My IBS will stop torturing me.  My Fibromyalgia might be a little more kind to me.  I will do it for me, because who else do I have?  Our bodies are counting on us.  Don't prove Voldemort right, you know he's been lying to you.        

I AM real, not the the voice inside your head.  Believe me when I say you're beautiful.  You are worth it.  If you can't do it for you, do it for me.  I think you're worth respecting.  

Could you have it?

You've probably been hearing more and more about Fibromyalgia.  You know someone who has it, its been in the news more, there are so many new studies coming out about Fibromyalgia.  So yes, you know the word, but what exactly is it?  Have some of the symptoms sounded familiar?  I've had so many personal messages from people asking me what it is.  "I keep having symptoms and someone mentioned I may have Fibromyalgia, but it's not what it sounds like."  Well, Fibromyalgia is going to sound different depending on who you talk to.  I have Fibromyalgia, boy do I have Fibromyalgia, and when I read the symptoms on Google, I'm like, "dude, that sounds awful, I can't believe that's what I go through."  I'll be dead honest with you, the women I've known with Fibromyalgia are the strongest women I've ever met.  People have this strange misconception that we have a lower pain tolerance than the average person.  Oh ho ho, how wrong they are.  The pain we deal with would have you bawlin' like a baby.  I've given birth four times.  All four times I wondered if I was really in labor or not.  I kept telling my husband, "this just doesn't hurt like it's 'supposed' to."  My doctors were floored that labor only felt like being on my period.  Eh, no biggie.  Periods from Lucifer himself, childbirth, what's the big deal?  Fibromyalgia pain?  Yeah, buddy, give me that epidural!  I had my muscles, ligaments, and tendons all ripped from my shoulder.  "Honey, I've just been hurting a little extra lately.  What could have happened?"  Go to a doctor, find out my shoulder's been ripped and maimed.  Ahhh, that makes sense.  "What, you didn't feel the extra pain?"  "Through Fibromyalgia, no.  That's what it feels like every day."  I went three months with a mutilated shoulder, had NO idea.  Our pain tolerance is extremely high, it's the dealing with it all the time, every day for years that wears on ya.

Growing up, we had a family friend who had Fibromyalgia.  It was described to me as a "very painful disease."  That was all I ever knew about Fibromyalgia.  When you have a high pain tolerance, which is most people with Fibromyalgia, it can be very easy to say, "well, I'm not in THAT much pain."  What is that much pain?  Who are you comparing it to?  What are you comparing it to?  When I was diagnosed with Fibromyalgia, I didn't believe it was Fibro.  "No, that's a very painful disease."  When was the last time you actually listened to your body?  I SO have Fibromyalgia, didn't know it until I listened to myself.  I know this may sound really strange, but I'm explaining living with Fibro, according to me.  My pain tolerance is so high, I totally convinced myself it couldn't be Fibromyalgia.

The face of Fibromyalgia can be very deceiving, too.

Look at this woman.  This is what the face of Fibromyalgia looks like.  Sexy woman cringing and grabbing something in pain.  Although it's true we're all bodaciously sexy, we very rarely look like this.

I like this one, too.  "Has Fibromyalgia been keeping you from gardening?"

Fibromyalgia has many, many faces, many symptoms.  It's not black and white.  It took me a year and a half AFTER being diagnosed that I accepted I do have Fibromyalgia.  "I'm not in THAT much pain."  Yeah, right.  I was.  I thought that was just me, that's just how I felt.  

Fibromyalgia ISN'T just for women in their 40's or later.  I was told by a highly medically trained family member that "Fibromyalgia doesn't occur in children."  I was a young teenager when I first felt Fibromyalgia creep into my life.  Fibromyalgia isn't just for women, either.  Grade school children and men get Fibromyalgia.  It's not "an old lady's disease."  Since when has a disease as malicious as Fibromyalgia cared about your race, sex, gender or age?  The face of Fibromyaglia is me.  Me, you, your mom, your son, your aunt.  We are the faces of Fibromyalgia.  Could you be a face, too?  Don't sell your self short like I did.  If you're thinking you may have Fibromyalgia, you probably have a high pain tolerance, too.  Sometimes the pain is sharp and stabbing.  For me, most days it's dull and achy.  Remove any idea, image, or opinion you've had of Fibromyalgia.  Know that not everyone with Fibromyalgia has all the symptoms often associated with it, too.  Most people will, that's why it's easier to diagnose.  I have EVERY symptom of Fibromyalgia and I still didn't think I had it.  Do your research, talk to family members, talk to your doctor, and most importantly, be honest and kind to yourself.  If you're really feeling something, feel it, don't second guess yourself or any pain and discomfort you may be feeling.  

Do you have any of these symptoms?

*Chronic muscle pain, muscle spasms or tightness.

*Moderate or severe fatigue and decreased energy.

*Insomnia or waking up as tired as you as when you went to sleep.

*Stiffness upon waking or after staying in one position too long.

*Difficulty remembering, concentrating, and performing simple mental tasks. ("Fibro Fog.")

*Abdominal pain, bloating, nausea, and constipation alternating with diarrhea.  (IBS, Irritable Bowel Syndrome.)

*Tension or migraine headaches. 

*Jaw and facial tenderness.

*Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold.

*Feeling anxious or depressed.

*Numbness or tingling in the face, arms, hands, legs, or feet.

*Increase in urinary urgency or frequency.  (Irritable bladder.)

*Reduced tolerance for exercise and muscle pain after exercise.  

*A feeling of swelling (without actual swelling) in the hands and feet.  

*This list of symptoms was copied from WebMD.

This is why Fibromyalgia can be so confusing.  People think it's strictly a pain disease.  As you can see, it's most definitely more than that.  There are some days that other symptoms are so strong, the pain doesn't even seem that bad.  It can be very confusing if you're wondering if this is you.  Do your research.  Talk to people.  Be honest with yourself.  Fibromyalgia is hard to understand, hard to accept, hard to live with.  Avoiding it, like I did, doesn't change the symptoms.  It's scary, it's frustrating and it's very lonely.  Fibromyaglia will open you to a wonderful world, though.  As much as I hate this imbecilic disease, it's also changed me in ways I never could have changed on my own.  It welcomes you with open, loving arms into a group of people like you've never met before.  Fibromites join stronger and love harder than any other group of people I've ever met.  It does suck, it's not fair, but I promise you you're not alone.  You'll always have a friend, someone who understands.  Besides, where else can a 12 year old and a 60 year old laugh together about feeling 90?

I love this idea, jump on board!

Be a part of the Visible Army!  Click the link below to join.

 fibromodem.wordpress.com - The Visible Army

Not quite sure what I find more amusing.

That I may have worked out, or that I can't remember if I worked out.

One of the quickest things you learn when you have Fibromyalgia, is that you can't lie.  Not even a teeny, tiny white lie.  Why?  'Cause the friend you canceled that lunch date with is going to ask you about it.  "My baby wasn't sick", you'll say.  You see, until you've tried spending time with someone who has Fibromyalgia, you don't even know how fartsy we are.  We're worse than your grandmother.  I'm in my late 20's and people get so frustrated with how bad my memory is, I'm not supposed to act like I'm 80.  I can't tell you how many times I'm mid sentence and have to politely ask what we were talking about.  It really goes that fast.  I love it when I put something really important in a really important place, this way I'm guaranteed not to lose it.  I've been looking for weeks for something I put in a "very special place, so I wouldn't lose it."  My favorite, though, has to be my "work out" memory.  I used to love working out.  Before Fibromyalgia, I used to do Navy Seal workouts.  Two hours, twice a day.  I'm vain, I love to look and feel sexy, I loved working out, it was pure adrenaline.  It felt sooooo good.  I never missed a day.  That was until I was diagnosed.  Now, Fibromyalgia doesn't let me work out like I used to, but I still wake up feeling like I did hard-core the day before.  My favorite is waking up and wondering if I'm sore from working out.  :)  I haven't "worked out" in years.  The last time I was hard core working out was four years ago, right before I started feeling Fibromyalgia real deep.  How in the world could you forget if you worked out every day?  Every day I wake up, I ask my husband, "did I work out yesterday?  My body's killing me!"  He laughs, and I stare blankly confused at him.  The only thing I CAN remember, is that when people act offended and say, "don't you remember anything?", I know to say, "I can't remember five minutes ago, you expect me to remember THAT?"

Fibromyalgia has made me an extremely honest woman.  There is no lie you can tell that you'll actually remember.

:)

I have this disease, see.

It couldn't be anything less than a disease.  I have canceled my appointment with a surgeon twice now.  The first time I canceled,  I really did have a migraine.  The second time I canceled, I was dealing with Whooping Cough, still am, gosh this doesn't wanna seem to let go.  Both times, though, I was secretly happy I could cancel.  I know for a fact I won't reschedule.  You see, my doctor is convinced I either have Colon cancer, and/or a Gallbladder that needs removin'.  I have every single symptom of Colon cancer.  Every single one.  I had a close family member undergo serious chemo therapy for Colon cancer at a younger age than mine.  It's hereditary, not to mention I have every single symptom.  Fill a toilet full of blood?  Sure, no problem.  I have every single symptom of a Gallbladder disease, too.  The truth is, when I was looking for what was wrong with me before being diagnosed with Fibromyalgia, they couldn't find anything.  I had every single test ran.  I was seeing specialists three times a week for months.  It was exhausting, it was a full time job.  All of our energy went into finding out what was wrong with me.  I did everything imaginable.  MRI, CAT Scan, EKG, X-Rays, EVERYTHING.  "Rachelle, there's only a 1% chance you could have this..."  "I don't care, I want you to check."  Celiac disease, Hepatitis, brain damage, (tests came back negative for that one, but we know better. ;) heart strain, Rheumatoid Arthritis, Diabetes, everything.  There wasn't a test out there we didn't try.  I saw a neurologist, cardiologist, psychologist, did I mention everything?  I did everything.  Saw every specialist, ran every single test possible.  Nothing.  When you feel like this, you already know something's wrong with you.  At that point, you don't care what you fail, you just wanna fail one of those dang tests.  You want the validation that this IS real.  You want to fail so you can just know what it is and start working on the treatment.  You just want to fail.  You never get that satisfaction with Fibromyalgia.  Yes, they CAN prove Fibromyalgia is real.  The can do expensive brain tests, hair tests or even skin tests which have all proven Fibromyalgia exists.  They don't, 'cause it's expensive.  You can't fake Fibromyalgia symptoms and if you have most of the symptoms (and there are a lot) and hurt all the time, all over, you're diagnosed.  After we exhausted everything we could do, my doctor said, "I really think you have Fibromyalgia."  I nodded, but secretly I was like, "that's fake.  Doctors make that up as the last resort.  You're just lazy and aren't willing to find out what's wrong with me."  If I couldn't believe it myself, why would I expect others to?  Now, I'm down right hurt and frankly pissed off if you don't believe me, 'cause I know it's a real disease.  The Fibro mentality will never leave me, though.  I am secretly happy I had an excuse to cancel twice with the surgeon.  I am 100% sure they won't find anything.  The last thing people with Fibromyalgia want to be called is a hypochondriac.  We're not, but when people think we are, we sometimes go to great lengths to avoid anything that might put us into that situation.  Like this.  I would rather die of Colon cancer, with people knowing I wasn't faking, than to go have it checked out and find out there was nothing.  Is that sick or what?  It's the dead honest truth, though.  I have an amazing marriage and four amazing, beautiful children.  I have every reason to go in and have it checked out.  I just can't bring myself do it.  I've already been told by a massage therapist that she could feel huge Gall Stones inside me.  She told me it was the cause of a lot of pain I've been having.  I have massage therapists and my doctor urging me to have it checked out.  There's definitely proof, yet I can't bring myself to do it.  My husband pleads with me, to which I give the same response, "you know they won't find anything."  I am more terrified of finding nothing than I am with finding something.  If I found out I had Colon cancer, as sick as this sounds, I'd be relieved.  It would mean all those years of complaining were legitimate, I wasn't lying or faking it.  If they didn't find something wrong with me, I'd be so mortified.  It would make me second guess and doubt myself.  There's no need to mention what others would say about me.  They already do, the last thing I need to give them is fire to fuel their prejudice.  I can't bring myself to do this.  I wish I could, but I'm absolutely terrified.  I wish I weren't having any symptoms, this is so frustrating.  I wish I didn't have Fibromyalgia.  I wish people would believe me when I say I feel really bad.  If only I could wish this all way, eh?  Well, that ain't gonna happen, so until then, I'll just stay up until three in the morning, like tonight, worrying about what's worse; having cancer or not having cancer.                       

There should be a law.

There seriously needs to be a law of physics for people who take care of kids, pregnant women, and those of us already dealing with a disease.  We should never be allowed to get sick.  This entire house has Pertussis.  The frickin' Whooping Cough.  All six of us, and it's pretty retarded.  We're hacking our lungs out.  Fibro sucks as it is, you get to the point where you're like, "this seriously couldn't get any worse", yet it does.  Being sick with Fibro is a double whammy.  You're already dealing with the "flu", now add Pertussis.  Ugh, freaking, grr.  The kids are ridiculous, nothing could make them rest and take it easy.  Taking care of kids when you're sick is a joke.  Not fair.  They get you sick, don't let you rest, then expect you to wait on them hand and foot.  Rude little people.  I'm not even kidding.  Even as I'm writing this, they're yelling at me for the lamest stuff.  Good gravy!  Ahem.

We did go to the doctor on Friday.  He gave us cough syrup with codeine in it.  Can I get a ho yeah?  I won't lie, Tramadol with the codeine?  I haven't been feelin' a whole lot of pain lately.  As far as that's concerned, hooray Whooping Cough!  As far as everything else has been going, ugh.  Today is our eleventh day with it in the house.  It's kind of gettin' old.  So if these appear to be the mad writings of a totally retarded, illiterate fool, no worries, they are.  I'm higher than a kite, baby, pay me no heed.