"Iz dees woman bi-polar?"

Reading past posts, I can't help but laugh.  They're all over the place.  "I love my life!"  "I hate my life!  DIE!"  They really are so bi-polar.  Well, they are to the healthy eye.  Sick people read my posts, and are like, "yes!  Oh my gosh, someone finally gets this!"  Being sick can seem very bi-polar.  You will never get this until you develop chronic pain.  The good days?  Those are the days where we say to heck with our disease.  "It won't define me, dangit!"  The bad days?  That's where we're freaking tired of fighting pain.  When its worn us down.  When we have no strength left.  The days we'd rather die than be physically punished by an excruciating disease.  The days we say, "this isn't worth it.  The only relief will come through death."  Then it can shift; pain could ease up just a bit, something great happens, we get good sleep, we have a better day, then it's back to, " I can keep fighting this."  Then you fight really hard for a week, but then it only takes a fight with a loved one, overdoing it in the garden, one night of insomnia, and the pain is all back, and we're thrown to the ground.  Again.  Yeah, it can totally seem bi-polar.  Imagine how frustrating it is for us.  We're still us.  The vibrant, beautiful, happy people we are.  Then disease sets in.  Then we become someone we're not.  Forced into this dark, hideous creature we try to hide from.  We don't like her.  She's mean, she's depressed, she's angry.  She hurts.  There is no way around our, um, I guess at this point, multiple personality?  There's the hilarious, talented, upbeat Rachelle.  Then there's the depressed, dark, angry Rachelle.  M.S. and Fibromyalgia will decide what girl surfaces.  Today, it's the dark Rachelle.  The "it would be so much easier if I weren't here" Rachelle.  The Rachelle that feels the battle isn't worth fighting anymore.  The Rachelle that feels she's holding her family back.  The Rachelle that wants to free those she loves, and to ease the pain.  No worries, the other Rachelle will pop up soon.  She always does.  I think she's working on her beauty sleep right now.  'Cause obviously the dark Rachelle isn't doing it... at four in the morning...

Anywho, chronic pain is a complex disease.  If I seem like I have a mental illness, it's okay, I do.  It's called chro-nic pa-in.  Those of us awesome warriors fighting it don't have much of a choice.  Those who say otherwise should come spend time with dark Rachelle, he he.

Today the pain is so great, I'm trying very hard to convince dark Rachelle I have to keep fighting.  She doesn't understand, or want to hear it, but nevertheless, she hasn't won yet.  I sit here, fighting insomnia, fighting hunger, fighting dark thoughts.  It's such a fight.  It takes a lot out of me.  Fighting with yourself is draining, in every way you can be drained.  Sunday nights are always bad, too.  Hubby goes back to work tomorrow.  I'm left alone with four small children.  I don't know if I can do one more day.  I am terrified dark Rachelle may win the fight one of these days.  How much more pain and suffering can she take before she breaks?  We'll see.  This is what living with chronic pain is.  Welcome to this dark, twisted world.  No, you will never, ever understand it.  Not until the day you become disabled.  I pray you're never a guest in my world.  If you are, you know exactly what I mean.  But now it is time to go rest the angry woman.  She really does better when she's rested.... oh wait!  I have insomnia, huh?  Hahaha, oh that was funny.  Eh, okay, then I guess it's time for Sister Wives.

Chronic pain means not knowing who you'll be for the day, or how you'll fight your battle.

Boston. 4/15/13

The news of Boston literally made me sick to my stomach.  First of all, I needed to find out what all happened.  Second of all, I needed to know who did it.  My first reaction?  Shock.  Second reaction?  Although authorities are still unsure of who is responsible, anger.  Serious anger.  I cannot get the face of this darling boy out of my head, and it doesn't matter who did it.

This sweet, eight year old boy waited to see his daddy cross the finish line of the Boston Marathon, the location where a devastating bomb, followed by another bomb, exploded.  He never got the chance to see his dad.  I have four kids.  My oldest will be seven this summer.  She is only a year younger, and I cannot even imagine.  The very thought of it has me wiping tears from my eyes.

The entire incident has angered so many, as it rightfully should.  My thoughts are always of the children, though.  What will the ramifications of this action cost?  How many children will suffer from ignorance and hatred?  How will this fuel American's hated towards an already hostile situation with Muslims, whether they were responsible or not??  How many children will be caught in the crossfire? American and Muslim.

Yesterday will be remembered.  Yesterday will be felt and heard.  Yesterday will hurt for a long time to come.

It's times like these that shake the very foundation of who, and what, we are.  Where we question everything.  It's confusing and frightening.  But like history has proven over and over again, this too will have to be resolved, one way or another.  It is my deepest desire and hope that whatever befalls us, there will be no more pain and suffering for children.  While unrealistic, this is my hope and dream.  It is nothing less than pure evil that can view innocent life with such little regard.

May justice be swift, and may it bring some restitution for those left suffering.

I freaking love people. No, really...

I love it when people act like my disease is such an inconvenience to them.  Holy crap, I know, I wish you could see how inconvenient it is for me!  It's never said in words, but the little round about ways of going about it.  "Why didn't you...?"  "Where were you...?"  Good freak, people.  It'll usually come down to the same thing.  Sick, in my bed.  Not feeling well.  I know my disease is SO darn inconvenient for ya there... I'll try to be better at that.  Pffffffffffft.

I can't complain to a whole lot of people.  For one, no one but people with bad diseases really get this.  Two, most of the people that irritate me are the ones I have to put up with.  I do try to make it obvious.  I so do.  But that's the thing about stupid people, they just don't get things.

Don't ask what M.S. can do for you.  Ask what you can do for M.S.  ;)

M.S. doesn't know who I married. Obviously.

It's four thirty in the morning.  My mind is racing.  Who's surprised?  Not me.

My husband and I are working on a project together.  A really, really big, life altering project.  It's fun, but there are many, many details that need sorting out.  Hence the filled mind.  That Type A personality of mine has me going over everything in painstaking detail.  Even if I have a solution, I will still think about it.  The Type A ensures I will get it done, and perfectly, I might add, but it can be such a pain sometimes.  The over analyzing is really quite unnecessary.

With every thought, or solution, my mind always seems to come back to one simple question.  What will the M.S. think of this?  It's difficult to walk, and it's proving to be a harder challenge every day.  Will it let me do this?  What if my mind can't keep it together long enough?  Will I have the energy, physically and mentally for this?  It's quite frustrating to be a Type A, to be highly motivated, to be ready to go, just to have your body fail on you.  It's frustrating I even have to ask questions like this.  The project we're tackling would take no less than a healthy person, in every sense of the word.  I get worn out getting out of bed.  That is a chore.  Is a Type A personality, a strong drive, and a dreamer's heart enough to physically be able to push past any obstacle?  We're about to find out.

Multiple Sclerosis is the most powerful force I've ever reckoned with.  I've heard two powerful stories, just this weekend, of two warriors who lost the fight to M.S.  It doesn't frighten me, hinder me, or change anything.  It does make one think, though.  How much longer will M.S. let me keep at this?  I am deteriorating fast.  Much faster than anyone really knows or suspects.  I always wanted to be an actress when I was a girl, and it seems my talent in theatrics still holds well today.  I am very good at faking my health.  I have been faking for years now.  It's come to the point where I cannot even hide what's going on even from acquaintances.  I have gone downhill so fast, just within this last year.  It's no longer anything I can hide.  I walk funny, I talk funny, I slur, I stutter.  A lot.  I am always cold.  I am always fighting to get a simple sentence out.  I have to read, and re-read everything I write.  I once took great pride in my grammar and my understanding of the English language.  I now find it a special challenge to spell the most simplistic words.  "It is fair, or fare?"  I have difficulty tying my shoes.  I find my body goes numb faster, and stays numb longer.  When my mind isn't racing, it's extremely foggy.  I find I can no longer drive.  If I have to, it's for short distances, and even then it's quite the task.  My voice is gone.  It's become so strained, it sounds like I am terrified.  It shakes and loses itself.  I have become very self-conscious of it, and I avoid phone calls like the plague.  My husband schedules all my appointments for me, and makes all phone calls for me.  I only have phone conversations with my sister and mother, and at best they're physically strained.  My vision is going.  I have intense pain behind one eye, and the other eye is losing its vision.  I have lost my ability to reason in many situations.  I get confused when I go places.  If my husband doesn't drive me somewhere, I will not go.  If my husband doesn't stay with me,  I cannot move.  I cannot go to the store without my husband.  I do not know where I am going, I become extremely confused, and I feel overwhelmed.  He has to push the cart, and gather everything.  He has to check out and pay.  He has to load the children into the car and buckle them.  Needless to say, he is my knight in shinning armor.  I would be lost without him.  Literally and figuratively.  He is my rock.  The light of my life.  My reason for living.  My reason for wanting to keep going.  He is the reason I feel like I can take on this project.  He is the motivation, and the very soul of this project.  M.S. has no idea he's coming.  M.S. has no idea he's backing me up.  Behind every question, I can hear M.S. menacingly whisper, "you can't do this, you know you can't.  I won't let you."  To which my darling husband of eight years responds, "you can do this,  I am here.  I won't let M.S. hurt you."

I am blessed beyond words.  I have people offer condolences to me all the time.  I have to say, I feel so embarrassed by this.  To me, this is old hat.  This is what I do.  Day in , day out.  What they don't know, is that I don't feel defeated.  Most of the time.  :)  They don't know that I don't feel scared.  Most of the time.  :) That I don't fear the future or what is has in store for me.  They know I have Multiple Sclerosis.  They don't know my husband is Superman.  And that's what makes this bearable.

Love of my life, father of my children, my best friend.  Forever and always.

 

What if you were told you only had ten years left to live?

I hate M.S.  I really do.  I always have, always will, but there are times when it just biotch slaps you in the face.  Quite rude.

The times you dream big, the times you try, they all just seem pretty frivolous.  What does it matter?  M.S. will stop you no matter what.  That's so hard to accept when you're used to fighting.  When you're so darn stubborn, you won't go down without kicking and screaming.  I will go down kicking and screaming, you can be sure of that, but in the meantime?  Ugh, M.S.!  Get a life!

When I first started getting sick, the shock of it all was, um, quite the shock.  My husband also has an auto-immune disease, Type 1 Diabetes.  I asked him how long it takes to get over the shock.  I asked him how long it takes to stop denying it, how long does it take you to finally accept it.  Here I am, just now realizing that it's not the same.  Diabetics take shots.  Then they continue their lives.  M.S. doesn't let you go back to the old you.  You're progressing every day.  You get worse every day.  This is not Diabetes.  So the answer to those questions?  Never.  That's the answer.  You never get over the shock.  You never stop denying it.  You never accept it.  How can you accept a disease that never lets you go back to your life?  That never lets you be normal again?  Diabetes is a bad disease.  I do not downplay that.  I just wish I could regulate my blood sugars and be okay.  Diabetes is a disease you're in control of.  Take care of yourself, you'll live a long, happy, normal life.  I DO take care of myself.  90% better than most people do.  But ya know what?  Nothing I do will stop my disease from progressing.  I have no control, no say in what happens to me.  I can eat right, exercise, get my sleep, meditate, it doesn't matter.  It's going to keep progressing.

There are four types of M.S.  I have the one you don't want.  The one only 5% get.  The one that never lets you go into remission.  The one that never takes a break.  The one that starts out so severe, keeps going severe, and stays so severe, you're expected to die ten years after diagnosis.  One year down, nine to go.  Does it scare me?  No.  Not like you'd think it would.  Does it make me mad?  Um, yes.  Very much so.  My oldest child will be 16.  My youngest will be only 11.  I will miss all of their weddings.  College, heck, even high school graduations.  My grand-babies. 

Family will tell you you're going to be one of the lucky ones.  I think they say that to try and convince themselves more than you.  'Cause you have M.S.  You know how fast you're deteriorating.  You can see it, you can feel it.  Either way, I hope they're right.  I don't count anything down, I don't feel doomsday coming.  I do feel incredibly calm about it.  Angry yes, but calm.  If I only have nine years left, they're going to be the best nine years ever.  I'll make sure of that.  If I live longer, I will never take a single day for granted.  Until then, screw you, M.S.  

  

I'm tired, y'all.

I am SO tired.  For once, I could actually sleep.  I am up at five in the morning waiting for diapers to dry.  We didn't even realize until this evening that our baby's cloth diapers needed to be stripped.  I only started to let them soak at ten thirty.  Then I went and totally forgot about it.  Come two thirty, I remember that I hadn't started the wash.  My baby's wearing the last diaper.  He has hypoglycemia, so even though he's almost two years old, he's still waking up in the night to raise his blood sugars.  There's a very good chance he'll be needing a diaper soon.  So, here I am.  Sitting, blogging, Facebooking, Youtubing, reading celebrity profiles, watching makeup tutorials, doing everything but sleeping.  There is something seriously wrong with this picture.  I could sleep, but can't?  Well played, Cosmos, well played.