I'm gonna be the best at being sick.

Well, a little update.  We're alive.  :)  We're well into Adam's working career.  So far so good.  I am managing so far.  It's hard, and more often than not, my kids are eating dry cereal.  But they're alive and my sanity is still intact.  So far.  So far so good.  It's definitely not easy, but it's getting done.  I tell myself I will not allow things to get bad physically until my kids are old enough to start doing things for themselves.  The youngest is two and a half.  So I still have a ways to go.  One day at a time though, yes?

What compels me to write tonight is illness related.  Go figure.  The way illness affects me.  Today was just awful.  I got eleven hours of sleep last night.  Sounds amazing, right?  You would think so.  When you're a sick person though, sometimes that's not enough.  Sometimes enough would never be enough.  Eleven hours.  I woke up exhausted.  I took a nap only four hours later.  If it weren't for needing to write, I would be in bed now.  I woke up to the worst brain fog imaginable.  Cotton stuffed in every nook and cranny.  Not a thought to hang on to.  Terrible vertigo, caused by low blood pressure.  Even when I was sitting, the room was spinning.  Awful nausea.  I can't even describe how dreadful I felt.  I would have given anything not to be me today.  Then to make matters worse, when you're already feeling vulnerable, you enter the mystical world of Facebook.  The book of fakes.  Where "my kids are perfect," "my house is perfect," "my tires got slashed, but hey, the sun is shinning!  #lifeisgood #godisgreat #nothingcouldkillmymood"  is totally normal.  Oh, and butterflies just shot out me arse.  Welcome to social networking.  Where being real is complaining, and hey, no one likes a grumpy puss here.  I too fall into the fake category now.  It was when I got too many private messages, or not so private messages, saying, "yeah, we all hurt," or "what's going on with you, are you depressed?"  No, it's real life.  I thought you added me as a "friend" to see what was going on my life.  M.S.  That's what's going on in my life.  It runs my life.  It chooses everything for me.  Will I shower today?  Will I be able to get out of bed?  Will I need assistance making my food?  I dunno, ask M.S.  What will I do with my life?  What will I be?  What am I contributing to society?  I dunno, ask M.S.  Today was that very question.  The one that got me feeling even worse.  "What will I do, M.S.?"  What are you going to let me do?  I ran across a friend's blog tonight.  So many comments, and so much hooplah over it.  "You're such a good writer."  "Amazing, so well done."  It made me feel like crap.  He is a good writer.  He's a great writer.  My mom doesn't even read my blog.  It's boring and well, for most people, it has too much complaining in it.  I want people to appreciate my work.  I am a makeup artist and I look at armatures who do better makeup than me.  Then I feel like crap.  I look at moms who freaking Pintrest their kids meals.  Who in the hell makes snowmen sandwiches?  Yeah, not me.

I have had this sick desire, ever since I was a little girl, to be the best.  At what?  It didn't matter.  I dreamed big, and I knew I could be the best at it.  Turns out I couldn't.  Aside from being sexually and physically abused, I was told horrible things.  "That's unrealistic, that isn't going to work."  "You've never done anything in your life, why would you be able to do that?"  These voices were a part of every day life for me.  "They say I'm stupid, why would I ever be able to get an A?"  "They say I'll fail, why would I even try?"  They drummed them into my mind so much, they now live rent free in my head.  These voices are as much a part of me as M.S. is.  I'm Jewish, though.  Stubbornness is written into muh gosh darn DNA.  Why do I still try when they tell me otherwise?  I was always told I was ugly and worthless.  Now it's my job to be the prettiest, be worth the most.  There are much prettier girls than me.  Do I still try?  Yeah.... I'm dumb, and I still want to be the smartest.  In all things I do, I always strive for perfection.  I won't be satisfied until I can be the best.  Which is totally unrealistic, so why do I try?  Beats me!  I lay in bed tonight, telling my husband how frustrated it makes me.  I don't wanna blog anymore because so and so did it better.  If I can't be the best, or at least do it well, I don't wanna do it.  Same with makeup, same with school, same with everything.  It hurts my feel bads to be so passionate about something, try so hard at it, and then see someone effortlessly doing it better than you.  I dunno, maybe it's just me.  I am not jealous.  I am the LEAST jealous person I know.  I am totally happy for these people.  I love to see people excel.  I'm just mad at myself that I couldn't be one of those people.  It's silly.  It's a waste of energy, but there it is.  I tell my husband all these things, afraid he'll laugh at me and tell me it's silly.  He doesn't.  He says he feels the same way, too.  Except he IS one of those people you look at and say, "why can't I do it like that?"  He's amazing though, and always knows what to say.  "Yeah, I read ---'s blog, too.  It's a bunch of crap.  He doesn't talk like that.  He's just trying to sound smart by using big words.  If it helps, I'll buy you a thesaurus so you can sound fake, too."  I love my husband.  "Your blog isn't to complain.  It's not to be flowery and try to appeal to people who want to pretend they're smarter than you.  Your blog is about living through disease.  It's realistic and it's about life.  People don't say you're a good writer, they say, 'thank you for understanding, thank you for writing, it helps me so much.'  It's about helping others, not trying to place yourself above others."  It's true.  It's why I started writing.  To show non sick folk what's it's like to have the carpet pulled out from under your feet.  To show sick folk that they're okay saying their back hurts.  That's it's freaking okay to be sick!  We don't need permission from kids, spouses, family members, or any nay sayers.  We don't need to prove we're sick to people who say, "but we're all tired!"  We didn't ask for this.  We would trade anything in the world to be rid of it.  We're not lazy, we're not making excuses.  We were randomly picked, like any child born deaf.  We had no say in the matter.  No one chooses to be blind, no one chooses Diabetes, no one chooses chronic pain.  THAT is what I blog for.

"Well, I may not be the best at anything, but I'm gonna be the best at being sick.  Thanks, honey."

Yeah, I think I'm getting pretty good at this sick thing!

  

Finding the strength.

Well, the hubby got a fantastic job.  He got a bachelor's in business management, with an emphasis in supply chain, and will get to use the supply part with this new job.  He's pretty excited.  So am I.  We were in school for four and a half years, suffered with my health, having four kids, and no money to take care of them with.  It's great.  Fantastic.  Awesome pay, great benefits, amazing everything.  We're moving back to Idaho, which is a dream come true for both of us.  Great, great things.  So why do I feel like crap?  I am terrified.  I was diagnosed with Fibromyalgia after my third child, and Multiple Sclerosis after my fourth.  My husband was in school and his schedule was very flexible.  He was always there to help me when I needed him, which was all the time.  He graduated a year ago and was working for a boss who was a personal friend.  Hours were sparse so he could take care of me and the kids.  Now he's working for a huge corporation.  He's the boss.  He's got tons of people under him.  Huge responsibilities.  Work will be his main focus now.  That scares the living poop out of me.  Since my diagnosis of M.S., I have relied so heavily on him.  I mean, the guy's been washing my hair.  I can't cook for myself.  He's done EVERYTHING for me these last two years.  My two year old prefers his daddy to his mamma.  He's been dad, mom, cook, maid, chauffeur, ('cause I also can't drive anymore) teacher, (we home school) and he takes care of a disabled person, no easy feat.  He's taken on so many roles.  All the roles.  All I had to do was not kill myself from pain.  Now everything is up to me.  His first day he flew to Denver for orientation.  It was an overnight trip and he left me with a cold, and four sick children.  We've also been babysitting a new baby for extra money.  Very first day on the job and I'm sick with five small children, also sick.  Ages seven, five, four, two and five months old.  Um, yeah, it was hard.  Now I only have the rest of my life to do this...  I have no idea how I'm going to do this.  God has a very funny sense of humor.  I'm thinking I either shouldn't have had four kids, or I shouldn't have developed so many diseases.  How in the world will I raise these kids?  I can barely get off the couch, and if you have kids, you know it's the most demanding job in the entire world.  They ALWAYS need something.  They're always hungry.  They're always fighting.  Day two into this and I'm so tired I think the fatigue alone will kill me.  We won't even talk about the pain... No, yeah, let's talk about the pain.  It hurts like a mother.  I can't believe the human body can physically endure pain like this.  And do I know pain.  I have given birth four times.  No one took me seriously when I was in labor because I was handling the pain so well.  I have passed kidney stones without even knowing I did until later, and was told that's what was going on.  I've had my shoulder muscle ripped from my skull, shoulder blade and back, and went months not knowing what had happened.  I've recovered from two excruciatingly painful surgeries, been in painful car accidents, and have an all over pain coursing through my body, Fibromyalgia.  I thought Fibromyalgia was awful.  Then I got M.S.  My pain multiplied ten fold, no joke.  I was working with Fibromyalgia.  I was an office manager, running a chiropractor's office.  I was running my own business as a makeup artist on the side.  I was putting my husband through full time school AND I was raising three kids who were all born within three years.  I was a juggling act with Fibromyalgia.  It was hard, but I was doing it well.  Cue M.S.!  My life goes to hell and I have no idea why.  Everything changed, literally over night.  I became depressed, seriously anxious, dealing with crippling pain.  I had to quit my job, my husband had no idea who I had become, my kids lost their happy, loving mother.  I was diagnosed with M.S. about nine months later.  It made sense, but it really sucked.  Life has never been the same.  My type A personality has been reduced to a helpless cripple.  Ooooh, that bugs me.  I am a take control, run it all, do it all, have it all, type of person.  This is not me.  It was so hard learning to depend on my husband.  There was so much guilt, anger, and frustration.  Two years later, I've come to rely on him.  Now I have no idea what to do.  Add Hypothyroidism just a few months ago, and now I really feel like a wreck.  I am so anxious all the time.  I am scared all the time.  I live in constant fear.  My kids, even now, need something, and I am in so much pain I can barely move.  My teeth and gums ache.  I mean, it is everywhere.  My hair hurts.  I had to beg my doctor to put me on anti-depressants and anti-anxiety.  They're kinda crazy when it comes to prescribing things.  "Well, these are highly addictive and we don't just give them to anyone...."  Yeah, I know, but I shouldn't have to prove how sick I am to you.  Pain killers?  Are you kidding?  You'd think with Fibromyalgia and M.S. doctors would get that and have no problem prescribing something for pain.  Oh, guess again.  You still have to prove you're not some addicted junkie.  Yes, you do get addicted to them.  That's what pain killers do.  It doesn't make you a junkie or an addict.  It means you're someone who's suffering and NEEDS them.  It's a shame people abuse medicine that you so desperately need.  It makes it that much harder.  So I'm not on any pain medication.  I'm not on anything but a lousy anti-depressant which my doctor is hoping will help with the anxiety I get from the pain.  This just in: NO!  Not working, doc!  It's hard to live.  I don't know if you know or not, but I was diagnosed with a terminal type of M.S.  I am progressively getting worse every day and it will eventually cut my life.  I was told to expect no later than 35.  There are days I'm just like, "C'mon, 35!"  I know that sounds horrible, but I wish I could show you what I feel.  I don't have a desire to die.  Not at all.  I love life.  Love it.  My family is the most amazing thing in the entire world.  I love them more than life itself.  The thought of missing out on their lives is killing me.  The thought of leaving my husband is killing me.  But the pain is so unbearable, I just want peace.  If you've dealt with pain this bad, you know what I mean.  Childbirth is so painful, women often scream during labor, "just let me die!  I can't do this!  I just want this to end."  So it is for me.  One day at a time.  What will be will be.  I pray every hour on the hour that I can make it through that one hour.  I can't even look to the next day.  "Lord, let me make it through this hour, I beg of you."

Let's just make it through this hour.

            

Everyone has that one song.

Everyone has that song that can quiet their minds.  One that defines who they are, speaks to them on a level that's deep and personal.  Well I have one, too.  One that's extremely personal.  One that most definitely speaks to me.  One that can calm my nerves, quiet my mind, and make me weep like a child all at once.  Yeah, so it's as long as an episode of Glee, and it has no lyrics at all.  This song depicts my life as it was, as it is, and as it will be.  If you can feel the music, you'll know exactly what I'm talking about.  It's Rachmaninoff's piano concerto No. 3.

Rachmaninoff, proofing copies. (1910)

Music is one of the joys I treasure in life.  Music is in my DNA, my body understands its language better than English.  Listen to a clip of Rachmaninoff himself playing his most famous piece (in 1939), and tell me you don't feel the pain wash away.  

M.S. hug.

"M.S. hug" sounds like something cute, huh?  "Awww, M.S. love you!"  Yeah, what a dumb name.  M.S. hug is a condition from M.S. that feels like "you're being hugged."  No, not even close.  A hug is warm and fuzzy.  M.S. hug feels like you're being constricted by a boa constrictor.  Granted, I have never been constricted by one, but I imagine it would feel pretty close.  I just had my most severe case so far just ten minutes ago.  Gah that feels awful!  It's really hard to breathe.  And holy uncomfortable.  It's almost painful.  It's on the border for me.  It's so uncomfortable it's slightly painful.  It's like being under water and trying to take deep breaths.  But worse.  The "hug" can grip in different places, but it's most common in the upper rib cage, down to the lower abs.  For me, it's tightest in the lung area, but what was weird today, was that I also felt it in my arms.  So weird.  I can't even describe it, it's just weird.  If your arms had lungs, that's what it would feel like.  I don't even know how it's possible, but yeah, in the arms, too.
About.com said this about M.S. hug:

What Causes the "MS Hug?"

It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.

What Does It Feel Like?

Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:

• As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
• Focused in one small area (usually on one side or in the back) or go all the way around the torso
• Worse when fatigued or stressed
• Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
• Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure

How Severe Can It Get?

Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack.  

Such a loving disease!  :)

Star Trek convention in Las Vegas.

This is going to be totally random, so forgive me.  Here's the shi$ttiest thing about being sick and poor; being five hours away from the Star Trek convention, and you're too poor and sick to go.  I know, weird, right?  I'm makeup artist who's super girly, and blogs about her many diseases.  Little did you know my dark secret.  Biggest.  Trekkie.  Ever.  Period.  Looking at the pictures on Facebook are killing me!  They've already posted a lot of the "people I MUST sleep with before I die," pictures.  Yes, most of the people I gotta tap before I die are Star Trek characters.  I don't have a life, don't judge.... ;)

Me, today.  Watchin' freakin' Star Trek.

Me, as I should have been this weekend.  A blue freakin' Andorian.  Minus the feelers.  And clothes.

So until next time, Alexander Siddig.  We'll make our freak Arabic, (from you, naturally) Jewish (from me, obviously, have you seen my shnoz?) baby at a later date.

Until diseases and bank account say otherwise, and hoping M.S. doesn't kill me before I'm thirty five like it's supposed to, I do believe it's time for another round of Voyager.  Mmmm, Mexican-Native American/Jewish baby?  "Oh, Chakotay!"

Netflix Day!!!!

Netflix Day- Day spent in bed watching Netflix due to high levels of yuck.

Today is Netflix Day.  Officially and unofficially.

Found out today that I have Hypothyroidism.  My mom has it and my brother has it.  I figured I'd get here soon, too.  It's not uncommon to get more than one autoimmune disease when you already have one.  If your body's already attacking one system, why not another?  I wasn't surprised I had Hypothyroidism.  I was pissed, but not surprised.  So, one more disease to add to my list of diseases and conditions.

I've always struggled with my weight.  I have to work my arse off not weigh five hundred pounds.  And I do work my arse off.  That's why I knew something was up when diet and exercise weren't doing it.

I hardly eat.  Ever.  I eat about one meal a day.  When I do eat, it's very healthy.  I don't eat one meal a day on purpose.  I get nauseated, and honestly, I don't get hungry that often.  I eat when I'm hungry, don't eat when I'm not.  Simple as that.  I work out hard.  I do intense work outs.  How can someone who works out hard and eats very healthy gain six pounds in a week and a half?  Hypothyroidism.  It wasn't a mystery at all. With it so rampant in my family, that was my first thought.  It had to be.  Turns out I was right.  Boo for being right.

They test my husband at every Type one Diabetes check up he has, because once you have one auto-immune disease, it's easy to get others.  Since I have M.S., I used to always joke that I would get Hypothyroidism next.  Not a funny joke.  Well it is, but not really.  From now I on, only jokes about being filthy rich.

I woke up a little off.  Thank you multiple diseases ravaging my body.  This is not unusual, but finding out I have one more disease to add to the, what is it now, six diseases and conditions I'm rocking list, it was a bit of a put out.  I am soooo fatigued today.  I can't explain it.  Just super fatigued, and off.  There's no other way of saying it.  Tired, tired, fatigued, always in pain, and off.  Yeah, off.  So today is a Netflix day.  Gonna just put diseases and their symptoms away here for a second, and seriously distract myself.

Walking Dead, anyone?

Me, having my Netflix Day.

It really doesn't sound that bad.

My husband was the first out of the two of us to get an auto-immune disease.  As I was new to experiencing his Type 1 Diabetes, I read up on it as much as I could.  It didn't sound that bad.  At all.  Experiencing it, though?  Totally different story.  Losing vision to low blood sugars.  Collapsing, fainting, black outs.  Anger with high blood sugars.  Severe emotions on either side.  Fatigue, headaches, shakiness, the numbing of extremities, muscle fatigue, shortness of breath, mental confusion.  These are not all, but some of the side effects of my husband's diabetes.  He had a stroke at the tender age of seventeen, and a heart attack at twenty six.  Reading something and experiencing them are two totally different things.  I have hypoglycemia, so I can, in a sense, understand a bit of what my hubby goes through.  I can never truly understand what living with Type 1 Diabetes is like, though.

The hubby and I.  Rockin' our auto-immune diseases.  It's what the cool kids are doing these days.

I read about M.S., and I'm like, "huh, why don't they make it sound as bad as it is?  That doesn't sound bad at all."  Overall pain?  No, throbbing, stabbing, numbness.  Fatigue so severe you can't even move.  The worst sorts of migraines, backaches, knee aches, um, everything aches.  Memory so bad, you forget the conversation you're having at the moment.  Pain from typing on yo dang bloggy blog.  My fingers hurt.  Serious stomach cramps.  All zee time.  I never get a break.  Reading about it sounds so much more pleasant than the reality of it.  True story.  

    

"And the rockets red glare, the bombs bursting in air."

The fourth of July is without a doubt my favorite holiday.  First of all all, it's warm, you got parades, you're barbecuing, there's fireworks, and most of all, I am a history buff.  There isn't a better holiday when you're a nerd.  It's my country's holiday.  My country that I love so dearly.  I am a huuuuge patriot.  I live and die for this country.  There isn't anything I wouldn't do for her.  But the history alone.  America fought for its freedom to be an independent country, free from England.  On this day in 1776, 50,000 men were killed or wounded so far in the fight for my country.  Even as a child, and a thought I continue to this day, I close my eyes during the fourth of July fireworks and listen to "the rockets red glare, the bombs bursting in air."  Fireworks are so much fun, it's a time honored tradition.  But more than their beauty, they're a reminder of the fighting.  A reminder of what it took for our country to be what it is today.  Close your eyes as you enjoy your fireworks tonight, even for just a moment.  As you're surrounded by the sound of "gunshots," imagine the sacrifice and courage it must have taken for these brave men who gave their lives so that we may enjoy what we have today.  I can sense it as I smell the smoke, hear the "bombs," feel the warm breeze across my face.  I can almost feel the sense of fear, adrenaline, and pride, willing to die for a country I believe in.

"The hour is fast approaching, on which the Honor and Success of this army, and the safety of our bleeding Country depend. Remember officers and Soldiers, that you are free men, fighting for the blessings of Liberty -- that slavery will be your portion, and that of your posterity, if you do not acquit yourselves like men." -- George Washington, 1776

You're just dumb, but maybe I should have done a better job on my end.

Maybe you judge M.S. because you don't know what it is.  Yes, it's very hurtful when you judge me, especially when you have no idea what you're even talking about, but maybe I should have explained it better?  I still think you're just a judgmental little bit#ch with nothing nice to say, but hey, here I go again.  I'll try to clear my name.

I have been told twice in the last couple of weeks, by two separate family members, that it's all in my head, and that I'm choosing to be lazy.  These come from family members who are convinced they're God's gift to the world.  They're so far up their own asses, they can't even imagine someone else is suffering.  Do I sound sound pissed?  :)  I guess I could be, he he.  It's to these two family members that I write this for.  For these two family member I know will never read this.  Eh, makes me feel better anyways.

Okay, I'm just gonna copy and paste this information from Wikipedia.  Here is what M.S. is:

Multiple Sclerosis (MS), also known as disseminated sclerosis or encephalomyelitis disseminata, is a inflammatory disease in which myelin sheaths around axons of the brain and spinal cord are damaged, leading to loss of myelin and scarring.  The cause is not clear but the underlying mechanism is thought to be either destruction by the immune system of failure of the myelin-producing cells.  These changes affect the ability of nerve cells to communicate resulting in a wide range of sings and symptoms.  It is more common in women and the onset typically occurs in young adults.

Almost any neurological symptom can occur with the disease and often progresses to physical and mental difficulties.  Psychiatric symptoms may also develop.  MS takes several forms, with new symptoms occurring either in discrete attacks (relapsing forms) or accumulating over time (progressive forms).  Between attacks, symptoms may go away completely, but permanent neurological problems often occur, especially as the disease advances.

There is no known cure for Multiple Sclerosis.

Okay, so that's what it is.  What are the symptoms?  Let's ask MedilinePlus.com this time.

Fever, hot baths, sun exposure, and stress can trigger or worsen attacks.

It is common for the disease to return (relapse).  However, the disease may continue to get worse without periods of remission.

Because nerves in any part of the brain of spinal cord may be damaged, patients with multiple sclerosis can have symptoms in many parts of the body.

Muscle symptoms:

Loss of balance
Muscle spasms
Numbness or abnormal sensation in any area
Problems moving arms or legs
Problems walking
Problems with coordination and making small movements
Tremor in one or more arms or legs
Weakness in one of more arms or legs

Bowel and bladder symptoms:

Constipation
Difficulty beginning to urinate
Frequent need to urinate
Strong urge to urinate
Urine leakage (incontinence)

Eye symptoms:

Double vision
Eye discomfort
Uncontrollable rapid eye movements
Vision loss (usually affects one eye at a time)

Numbness, tingling, or pain:

Facial pain
Painful muscle spasms
Tingling, crawling, or burning feelings in the arms and legs

Other brain and nerve symptoms:

Decreases attention span, poor judgment, and memory loss
Difficulty reasoning and solving problems
Depression or feelings of sadness
Dizziness and balance problems
Hearing loss

Sexual problems:

Problems with erections
Problems with vaginal lubrication

Speech and swallowing symptoms:

Slurred or difficult-to-understand speech
Trouble chewing and swallowing

Fatigue is a common and bothersome symptom as MS progresses.  It is often worse in the late afternoon.

Doesn't that sound awesome?  These aren't even all the symptoms.  These are just the most common.  This is just M.S., too.  Fibromyalgia adds a whole entire set of its own crap.

Something else people don't know, is that there are four types of M.S.  You may hear of someone who's living just fine with M.S., then you hear stories of people who die of M.S.  How does that work?  The four types of M.S.  Like cancer, and many diseases, There is no carbon copy of the disease.  Everyone will experience it differently.  You can totally live a wonderful, fulfilling life with M.S.  IF you get the right type of M.S.  If you're one of the unlucky ones, you'll die.  I am one of the unlucky ones.  M.S. is only deadly when you experience a flare.  With most people, M.S. will come and go in flares.  You will have a flare up, then you go into remission.  Back and forth through this cycle.  M.S. does damage on your body when you have a flare up.  Medication will prevent flare ups.  No flare ups, no progression of the disease.  If you have the deadly kind, there is no medication that can prevent it, and unlike the other M.S.'ers, your flare ups never go away.  There is no remission period.  This is why you die.  The constant damage of M.S. will shut your body down fast.  If you're diagnosed with the bad one, your average life expectancy is ten years from diagnosis.  I got M.S. at 25.  That will put me at 35.

PLEASE don't tell  me you know someone with M.S. who lives a good life.  Please don't tell someone who has cancer that if their neighbor could over come it, they can, too.  People die of cancer, people die of M.S. Not everyone is one of the lucky ones.  I don't wanna sound like, "I'm one of the ones that will die, pity me." It's not like that.  Not at all.  I just want you to understand the severity of my specific case.  I want you to stop saying stuff like, "everything is mental.  You just need to break the mental barriers down."  Or, "I wish I could lay in bed all day."  It's rude.  It's very hurtful.  Being sick does not make you lazy.  Dying of cancer or M.S. doesn't mean you have mental barriers to get over.  It's physical.  Say it with me, "PHYSICAL!!!!"  Not mental.  How can you will yourself better of an auto-immune disease?  No one says that to Type One Diabetics.  They are auto-immune brothers, but no one tells them to mentally will their blood sugars to a normal level.  So I just don't get it.  Why is M.S. different?  Why?  I try, and I try, but I just don't get it.  I'm sorry if you're lazy and wish you could sleep in later.  I wish I could get up early and live the normal life you live.  I'm sorry your life is so incomplete that you wanna pick on a dying cripple.  That makes you one sick fu^&.  Sorry, but it's true.

Did you know stress makes Fibromyalgia and M.S. even worse?  Did you know you're stressing the hell out of me with your insensitive comments?  I make it pretty obvious, so I'm sure you do.  As# wipe....

Anywho, yay for writing, boo for M.S.  I am so worn out from writing this, I don't even know how to close it.  I need to go eat and lay down now.  So we'll end it with stop being judgmental, you could be killing someone.  I'm not harming, hell, even affecting you in ANY way.  Why is it any of your dam business?  Oh yeah, it's not!  Go do something with your pitiful life.  I'm gonna go lay down now.

I'm so very anti the anti princess movement.

Didn't you know?  Princesses can't be presidents!  That's pretty anti feminist.  Last I checked, a girl can be whatever she wants... even a princess....

We all know someone like this.  Someone who bashes Disney's princesses.  I know a few, and frankly, I think they're dumb.  Their arguments?  "It's giving young girls unrealistic ideas about love and life."  "Disney's saying all you have to do is be pretty and you'll land a rich husband, and you'll live happily ever after."  Wow.  Bitter, much?  Here's the lame reasons I hear about how Disney princesses are brainwashing girls today.

Snow White.  The very first Disney princess.  Let's see, she had a narcissistic step mother who was trying to murder her.  Snow White was a servant who worked her as$ off.  All her life, AFTER losing a father she loved dearly.  She runs away, then has to take care of seven mentally challenged men.  Sounds like the good life, right?  No, she wasn't pretty, and her voice is bone chillingly shrill.  Then she marries a good guy.  The end.  What did you get from that?  It's unrealistic?  That a step mom is trying to have her daughter killed?  He he.  So she marries a prince.  She doesn't deserve a prince after all that?  What's more unrealistic?  A woman staying sane with seven men, or the fact that she marries a prince?  I dunno, people focus an awful lot on the prince part.  The lady endures hell, and she can still stay positive during it all.  That's what I got from it.

These people also can't get over the fact that Disney princesses were (a lot of them) sixteen years old.  None older than twenty one.  "What is Disney trying to promote here?  Child brides?"  You're just a stupid head.  Let's get one thing straight.  These are fairy tales.  Fairy tales Disney did not write.  Most are hundreds of years old.  It's common knowledge that women were married off in earlier times when they began menstruating.  I started my period at eleven years old.  Once you were a "woman," you were married off.  So all these medieval stories of sixteen year old girls getting married?  Sounds historically accurate to me.

Unrealistic idea of love?  Um, the first Disney princess movie, Snow White, was released in 1937.  Until recently, divorce was unheard of.  People who married during this time had/have long lasting marriages. You don't hear of a lot of baby boomers complaining about unrealistic marital expectations based off of a Disney movie they saw.  Ya just don't.  People today wanna blame Disney, though.  Is it Disney, or watching stupid tv shows like Jersey Shore?  Desperate House Wives?  Yeah, I can see how those could be misleading.  Disney?  Really? The number one reason marriages fail today is over financial stresses.  Even in the top ten reason marriages fail, I didn't see "had unrealistic ideas about marriage due to Disney movies."  If your marriage sucks, if you're unhappy, that's your fault, not Disney's.  Take responsibility.  No one is responsible for your failures.  You are.  Own up to it.

It's degrading to women.  Feminists are so funny.  If you're not doing a man's job, it's degrading towards women.  Dreaming about falling in love, wanting to be loved by another human being, overcoming obstacles is soooo degrading towards women.  "No, it's not that at all.  It's that all these princesses do is wait to be saved by a man.  They're not even doing anything for themselves."  Let's look at every scenario here.  Who did that?  None of them.  No one was waiting to "be saved by a man."  Being abused and hoping for a better life, wanting to be loved, not abused, makes you waiting to be saved by a man?  Don't we all do that?  When life sucks, don't we all dream of a better life?  That's not Disney princesses, that's life.  Pretty realistic to me.

All it's focusing on is pretty girls, like all their value lies in being pretty.  "The message they're sending here, is 'all you need is to be pretty, then you too can have all this.'"  Eh heh.  Okay, let's do a little test here.
Which bouquet of flowers would you rather have?

These?

   

Or these?

Which baby is prettier?

This one?

Or this one?

Which would you prefer in your living room?

Pretty, right?

Or this?  This one's a little better.

This may come as a shock, but human beings are aesthetically swayed.  Flowers, babies, furniture?  We're gonna go with the prettier choice.  Makeup has been around for thousands of years.  Beauty, in all things, is pleasing.  I don't enjoy dead, ugly flowers.  I enjoy beautiful flowers.  It's not a crime to enjoy and pursue the beautiful things in life.  This may come as an even bigger shock, but it is not a crime to be beautiful.  Being beautiful does not make you shallow.  Crazy, right?  People who are anti princess think it's all about being beautiful.

We should have had more princesses like this.  This way, you too, no matter how ugly you are, can feel good about yourself.  I'm sure this idea would sell like hot cakes.

We've got this whole, "big is beautiful" stuff going on today.  Yes, big is beautiful, just like beautiful is beautiful, too.  Skinny or fat, ugly or beautiful, beautiful is just beautiful, and beauty is in the eye of the beholder.

Kourtney Kardashian.  Smokin' hot.  Extremely beautiful woman.  Has a bachelor's degree.  As you sit there criticizing beautiful women, tell me, what do you have a degree in?  Bit$hing?

Laila Ali.  Working woman, mother, bachelor's degree in business.  Smokin' hot.

Natalie Portman.  She graduated from Harvard University with a 4.0 GPA in psychology.  Beautiful.  Woman.

The point I am making here is that it's okay to be beautiful!  You can be smart AND beautiful!  Disney princesses can be smart AND beautiful.  They can deal with the crap life has dealt them and still come out on top.  As an abused child with a horrific past, I totally understand how big of a deal this is.  Snow White didn't turn to sex, alcohol or drugs to deal with her crappy childhood.  She put on her big girl panties and lived her life.  She dreamed big.  She stayed a happy person throughout it all.  Heaven forbid I should let my two daughters learn to be tough!  Mercy, I would not want that!  

I grew up obsessed with Disney movies, and yeah, I loved my Disney princesses.  I have a loving, healthy marriage.  No, I don't feel like Disney gave me any false expectations.  I love that my daughters want to be Disney princesses for Halloween.  I'd rather them want to be Disney princesses than Snooki.  I'd rather them watch Disney love stories than the Twilight love story.  I'd rather them watch Disney than Teen Mom.  I mean really, in the world we're living in, you wanna pick on Disney?  Okay, but I think you need to be medicated.  Seriously.  

It is your responsibility as a parent to teach your children.  Not Disney's, not MTV's.  If they have unrealistic ideas, maybe it's you who didn't teach them right.  Stop blaming everybody else.  On the flip side, children will be children.  They have their personalities.  They will still choose their paths, no matter what you teach them.  They didn't turn out the way you wanted them to?  Not your fault.  Not Disney's fault.  Let's be responsible for our own lives, our own choices, our own children.  Yes, your children will be exposed to things.  Disney or Snooki.  How you handle yourself, that's how your children will learn.  If Disney princesses bother you, talk to your kids about it.  Don't teach them hate.  Hating princesses for whatever reasons isn't healthy for you or your kids.  Yeah, little Suzy CAN be a astronaut when she grows up.  She can also like to play dress up and feel pretty, too.  With all things in life, we must learn moderation and balance.  Don't make your daughters feel guilty for wanting to dress up and feel beautiful.  That is human nature, we all want to feel appreciated and beautiful.  All ya gotta do is show them the healthy balance.  That's it.  It's not rocket science.

Laryngeal Dystonia (spasmodic dysphonia)

I was diagnosed with Laryngeal Dystonia a month ago.  At the time, all I thought was, "uh-huh, I'm sure there is something else to add to all this..."  Out of boredom, and curiosity, I Googled it.  Turns out it's actually a big deal.  It's painful, and downright exhausting.  Who knew?  It's also common in those who have certain diseases.  Diseases like, oh I don't know, Multiple Sclerosis.  I did not know that.  It's not all that common of a disease, the Laryngeal Dystonia.  It's estimated only around 300,000 in the U.S. have it.  My husband said I'm special.  My response:

I really looked JUST like this, too.  Bald.

I just thought this was a condition that wouldn't be that big of a deal.  So I can't talk on the phone anymore.... so it's super embarrassing to talk to people.... that's all I thought I was dealing with.  Reading the symptoms, it turns out it's causing a lot of issues.  I had no idea it was that big of a deal, really.  Very, very big deal.  One more thing to add to my list of "that sucks" health problems.  Oy vey, leave me alone already. If you wanna know what Laryngeal Dystonia is in better detail, read about it here. Read about it HERE. :)
 

It's just too fun, these cycles.

I saw this picture on Facebook, and I'm gonna base the entire excerpt around this picture.  I just wrote about chronic pain feeling, and looking like bipolar disorder.  This is why.  I tried to put in words what happens, and this picture sums it up best.  Well, as if you already couldn't tell, I write when I feel sad, angry, and just frustrated about Fibromyalgia and Multiple Sclerosis.  Why would this one be any different?  :)  When I'm not writing, I'm usually happy and feeling well.  When I write, it's because I need the therapeutic effects of writing.

I am on my freaking period.  We'll just get that out of the way.  That should explain half of it.  I am so hormonally imbalanced, (I mean the sex hormones, not mentally.  Although... :) my periods are from Satan.  Personally.  I get so emotional.  So sad.  So depressed.  Like I said, half the problem right there.  Then we're living with my parents for a while.  That's gotta be the other half.  We moved into my parents basement while my husband looks for a job, and so we can house hunt.  You should never live with family.  The end.

My parents live in Utah.  If you live in Utah, or like Utah, I apologize for what I say.  I hate Utah.  I hate the weather, I hate the landscape, I hate the people.  Most of all I hate the people.  They're clickish, judgmental, snobbish, and the world's worst drivers.  I HATE Utah.  I moved here to get help from family.  My M.S. is so bad, I need all the help I can get.  My mom is here, who's a nurse, not to mention my mom, and then I have baby sister.  She is my life.  When she's not helping, she's making me happy, making me laugh.  If there's anything I need as much as help, it's laughter.  So here we are.  Hating everything around us, but my sister's amazing company.  No job, no house, living with my parents, mother nature, and to make matters worse, sister and mamma are leaving for Paris, France tonight.  Then they go to Italy and then Israel.  Am I pissed?  Yeah, you could say that.  My sister is twelve years younger than me.  I've waited for a trip like this twelve years longer than she has.  I've never been anywhere.  Not to mention I am so stressed out, life has sucked so bad my entire life, I could REALLY use a vacation.  I have never been on a vacation in my life.  Sure, my parents took us occasionally to places.  It doesn't count when you're a kid.  You don't even wanna go, and you're just dragged along, fighting with siblings the entire time.  Those don't count.  I have never been on a vacation in my entire adult life.  Two dumb diseases, four kids, and five years of college later, I'd say it's definitely overdue.  Yet baby sister's going.  Not fair.  I'm excited for her, yes, no doubt, but I'm also bitter about it.  I should be going, too.  The other crap side of that is that she'll also be gone for five weeks.  What in the heck will I do for five weeks?  I'm gonna be so bored!  I barely move here, because I wanted to be closer to her, and she's taking off for five weeks.  Dumb... so yeah, today's been great.  Hubby needs to get a job and a house.  Like yesterday.  So stressed, so sad, so ready to be in the next stage of life.  Don't know how much more of this I can do.  The emotional cycle of M.S. sucks butt.

Anywho, there's muh rant.  I wish I could say I feel better, but I don't.  Wish I could get some chocolate, but without a job, chocolate doesn't grow on trees.  Wait... he he.  Can't even get a bar of chocolate.  Ech, okay, well, yeah.  So that's what it's about.  It's too bad my kids destroyed my body.  I'd flash Bill Gates some boobs right now.  He might give me some chocolate.    

 

If I had a dollar for every time I felt guilt...

Was almost asleep.  Then I had a thought.  And that thought lead to another thought, and the snowball gained speed.  Fast.  It would take too long to explain, but I thought back on a time when something big happened.  To me, to my daughter.  It should have been exciting and fun.  Instead, it turned out to be awful.  I was unable to attend the event.  This was shortly after I developed M.S., although unknown to me at the time.  I knew I would not be able to go before hand.  I was angry at myself.  I was so guilty, and it hurt me bad.  My husband took my daughter, and called me throughout the day telling me the opportunity I missed out on.  He didn't mean any harm by this, but like me, he was very disappointed I couldn't go due to my health.  It hurt.  Here it is a year later, now with the knowledge of M.S., and I still blame myself for not holding it together better.  It was only one day.  What, I can't hold it together for one day?  I know I couldn't have.  It still doesn't stop me from blaming myself.  For being angry about it.  For scolding myself about it.  Wondering what I could have done differently.  Nothing!  I couldn't have done anything differently!  I made my choice knowing I couldn't do anything physically different!  It still doesn't numb the pain, or make me forget, though.  Darn that.  I so wish it would.  It's beyond frustrating to think I have four kids with a lifetime of experiences ahead of them.  I'll get to sit and watch from the sidelines.  How many events will I miss due to my lack of health?  It has to be the most frustrating thing in the entire world.  I didn't become a parent to watch it.  I became a parent to do it.  I am tired of being the spectator.

I had an interesting/infuriating dream last night.  Freud would have a field day with it!  Dreams are so fuzzy, and rarely make a whole lot of sense, but last night was very clear.  I had a conversation with my sub-conscious.  It took on a voice as loud and as clear as mine.  It told me I willed myself into developing Fibromyalgia and Multiple Sclerosis.  I yelled at it.  I told it that was a lie.  It was so menacing, and so completely certain in the lies it feed me.  "You made yourself get sick because you hate being a mom.  Now you get to take on less responsibility."  It hurt in my dream, but I knew it was true.  I agreed with my sub-conscious.  Dreams, no matter what you feel in your reality, are so intense and real, it's hard to distinguish reality from the dream world.  I deeply reflected on that dream today.  Why would that voice, knowingly to me in my dreams, represent itself as my sub-conscious?  Why did it sound hateful, mean, evil?  Why on earth did I agree with it?  Do I agree with it?  Being completely honest with myself, I began to get irritated.  Will myself into getting auto-immune diseases?  Really?  For one, I don't even know if that could be done.  No, I don't think I willed this.  Do I feel relief being sick, knowing this means I won't be obligated to spend as much time with my kids?  Oh hell no.  I was a great mom before I got sick, and I loved every minute of it.  My almost seven year old reminisces about the "good ol' days" often.  She misses it as much as I do.  We all miss the old me.  Do I miss participating in everything?  Oh my goodness, mmm, let's think about this.  Two years of sarcasm later, the answer is yes.  I miss everything.  I miss doing everything.

I do know one thing's for sure.  That dream, although way off base, did ring more truth than I'd ever care to admit.  It was fatally laced with guilt.  I could feel it then, as I still do now.  Guilt for getting sick.  Like I allowed this to happen to my family.  I don't know if it's my personality, the reactions I get from family and friends, or just part of being disabled.  I think it's a combination of all three.  Whatever the reasons, it will take a lifetime to lean how to forget and move on.  When you have a terminal, unforgiving disease slapped into your face everyday, this is easier said that done.  I have a good feeling I will take guilt to the grave.  We're old friends, almost thirty years together.  That's quite the relationship.  One I would love to dismantle.  Until then, I lay in bed.  Hurting, crying, scared.  I am scared of guilt.  It hurts me.  It makes me angry.  It can be a very negative feeling.  I hate when guilt feels the need to come and show its ugly face.  I do try to ignore it.  Try to convince myself that guilt is nothing but a lie.  An evil tool for living in the past.  While my head knows this to be true, my heart can't help but bleed a little.

I know this, and still...

Breathing ain't all it's cracked up to be.

This is a deviated Septum.  I had a severely deformed Septum.  I went to go see an ear, nose and throat specialist last week for all my issues.  I couldn't breath through my nose, I get congested and have runny noses all the time, headaches, snoring, tossing and turning, ya know, all the crap that comes from not being able to breath.  He took one quick look up my nose and was like, "your Septum is seriously deviated.  You've broken your nose a few times."  This didn't surprise me.  I can recall a few times I broke my nose, and saying, "honey, I broke my nose."  :)  He suggested surgery.  I said, "yeah, okay."  He also told me that my nose shouldn't be as "Jewish" as it looked.  I had a pretty big bump, which I never remember being that big, and he said that was the result of breaking it and I shouldn't have it.  He suggested a Rhinoplasty to reshape the broken nose, and a Septoplasty to straighten the deviated Septum.  Sounded easy enough to me.  I know pain.  I get pain.  It can't be that bad, right?  What is a simple nose job compared to Fibromyalgia and M.S.?  Hahahah, RIGHT!  Oh the pain.  I had my surgery three days ago.  It was freaking scary going under, scary waking up, and then it just got painful.  The surgery only took one hour.  He fixed my bump, and straightened my Septum.  I'm on serious pain killers, (which is funny, they don't even get rid of my headache) antibiotics, and anti-nausea medication.  It has been a rough three days so far.  Day one was the least amount of pain.  My body was in shock, but I was bleeding profusely.  I ended up clotting so bad, bleeding so bad, hubby had to call an ambulance to come get me.  I started to black out, and I told him I was losing consciousness, he needed to call an ambulance.  The kids were sleeping, so I tried to make it outside so they wouldn't knock on the door and wake them up.  Yeah.... I didn't make it.  I passed out as I got to the door and smashed my head against the wall and a chair.  I didn't wake up until a few minutes later.  I made it outside, was hooked to an IV and taken to the hospital.  I was severely dehydrated, had a huge headache from hitting my head, and so weak from all the blood loss.  At this point, I had filled two garbage bags of bloody tissue.  I lost a lot of blood.  I was surprised how much you could bleed from a nose job.  You know there's a lot of swelling, but you don't hear a whole lot about bleeding.  I had clots the size of my entire nose, and up into my sinuses.  Then they turned into quarter sized clots.  They were coming every hour.  I honestly thought I was going to bleed to death.  They got my body back in working order at the hospital and I was sent home.  The bleeding never stopped.  I just had my stitches and splints removed just an hour ago.  He cleaned up all my clots (there were a TON and it took him an hour and a half!) and tried to get the bleeding under control.  He said there were so many clots, he still couldn't get them all.  I have another appointment set up for Monday to remove what's left.  That was a lot of bleeding.  It's finally starting to ease up.  I'm still leaking blood now.  So tired of blood.  I ruined a few shirts and my blanket.  Sad day, I love my blanket.  But anywho, that's where I've been and what I've been up to.  Trying to survive the recovery.  Its been soooo uncomfortable, so painful, and very tiring.  Not a whole lot of sleep happening.  I'm so bruised, so swollen, but I can breathe!  Taking my splints out made me able to breathe, and I gotta say, wow!  Who knew breathing was this great???  I've been saying these last three days, "I don't care if it was medically necessary, not worth it!"  Now that I can breathe, and the splints and clots are gone, my outlook is slightly changing.  My cast comes off in a week, and I can't wait to see how un-broken I look.  They say getting the splints out and the first three days are the worst.  I've done three days, and my splints are out.  It can only get better from here.  Let's hope so.  This has been so hard.  I am tired.  I just wanna be normal again.  It's just a nose.  Who knew it was that big of a deal?

"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.