I'm grateful to be sick.

Well, its been a while.  Been living, moving, growing, learning.  Being sick.  :)

So much has happened with my life and my health, but it would take nine and a half years trying to explain it all.

I thought I was done blogging, and for the most part,  I am.  Just been having some thoughts on my health lately.

Like, would it be weird to say that I'm grateful for my diseases?

I was talking to my husband the other night, in tears, just telling him how grateful I am to be sick.  We had just finished watching 'Miracles from Heaven.'  I was bawling, and thinking how grateful I am that it's me who's sick, and not my children.  It's no guarantee that my kids won't get sick.  But for now, if anyone's suffering in my family, I'm glad that it's me.

I'm grateful, now that the anger about it is over, that this opportunity has made me so empathetic.

I'm so grateful that of all the challenges one could face in this world, I get to do illness.  I'd much rather have illness than some things other people have to deal with.

I'm grateful that disease keeps me grounded, humble, and able to live each day like it could be my last.

I'm grateful that pain keeps it real.  Love, family, happiness.  That is all that matters.

I'm grateful for the opportunity that pain has given me to grow.  I look at old, healthy me, and it's almost embarrassing.  That girl thought she had it all figured out.  That girl was judgmental.  That girl didn't have a clue.

In times of weakness, its been easy for me to look at healthy people and secretly hate them.  There's this couple we know that has it all.  Health, wealth, adventure, and no kids to be responsible for.  I am poor, with four kids, and my health is very bad.  I used to complain to Adam about this couple a lot.  "Must be nice to have all the money in the world, no kids to have to worry about, and have the health to do it all.  Could I be thrown a bone every once in a while?  They have health AND money?  And here I am with nothing."

Oh, silly girl.  You had it all.  You still do.  As I wept to husband, I told him how wrong I had been to want what they have.  Their marriage and relationships with others are strained.  My marriage is rock solid.  They're extremely judgmental, and have no problem telling you what you're doing wrong.

They have it all, but they have nothing.  I have nothing, but I have it all.

I am so grateful for the person I've become because of disease and pain.  I've always had self esteem issues, and problems with self acceptance.  As my body and mind lose their vitality, I find myself liking myself more and more every day.  None of which would have been possible without disease.

I never thought I'd hear myself saying this, but thanks, disease.  You did alright.


“Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved.” -Helen Keller

Can you die from exercise? I believe so, yes.

I was telling Adam last night, " I REALLY hate working out.  It makes me nauseated, dizzy, and I feel worse after."  My eight year old asked me, "Then why do you do it, mamma?"  Yes, why.  "It's good for my heart.  Or so they keep telling me..."

No one likes exercise.  I get that.  Unless you're one of those weirdos, you're like most people.  It's not fun.  But unless you're someone like me, you don't get my relationship with exercise.  When I say "like me," I mean chronically ill.  Fibromyalgia and M.S. makes exercise beastly.

My mom is Israeli.  I say that to give you an idea of how I was raised.  She was born and raised in a country that really doesn't do a whole lot of sugar.  You walk everywhere.  Foods are yummy Middle Eastern stuff with lots of healthy oils, beans and vegetables.  So the idea of eating junk food and being sedentary are kinda bizarre.  She raised us to be the same way.  Man, we were outside playing all day.  We ran everywhere to play with friends.  Walking to the gas station from my house, a good few miles, was no big deal.  We did it all the time.  I was a super active kid.  We also never ate crap.  It was complex carbs, lean proteins and vegetables.  We thought mamma was mean when our friends ate nothing but super colorful, crazily sugared cereals and pop tarts!  It sucked then, I won't lie, but what a gift she gave us.  None of my siblings are really into junk food now.   We'll take healthy food any day.  We feel gross if we're sedentary, and it usually moves us into action.

Fast forward some time.  As a teenager I exercised daily.  Taking pride in the way I looked was important to me, but I just felt better whenever I did.  Health was important as a child, and it was even more important as a teenager.

Fast forward some more, and add Multiple Sclerosis.  Ugh, what a butt head.  Exercise never felt good, but it never felt bad, either.  I've dealt with severe IBS since I was about five years old.  Fibromyalgia since I was a tween.  It never felt good while I was exercising, but like I said, it never felt bad.  Even with years of doing it though, I never felt like it was routine or that I enjoyed it more as time went on.  But you add M.S., and forget it!  When I was newly diagnosed, I looked up ways to stop progression.  Exercise was the only thing I could find.  Okay.  So I'll just exercise.  Or not.  You never have the motivation because you're so dang tired all the time, and you're already hurting!  But I'd do it anyways.  Just walking.  Put one foot in front of the other.  Even if I start out at just five minutes at a time.  Coordination and balance are huge issues with M.S.  If that sounds easy, you don't have M.S. I wobble, and I start walking crooked, unable to walk straight.  My knees start aching, and my chest gets tight.  I feel lightheaded and dizzy.  I feel sick to my stomach and wanna hurl.  Sounds like a serious boot camp, huh?  Nope, just a short, light pace walk.  Walking around Wal-Mart does the same thing.  Just any physical exertion for too long will do this.  If Adam takes too long at Wal-Mart, I go sit on one of their benches and wait until he's done.  I know where all Wal-Mart benches are located.

So what am I doing wrong?  Maybe I'm not eating right.  Nope.  I eat well.  No sugars, like, any.  No processed junk.  Maybe I'm not getting enough sleep.  Nope.  Plenty there.  Supplements?  Taking those, and of high quality, too.  I'm doing everything I should be doing, and I still feel this way.  Fighting disease is just the pits.  I'm slowly trying to accept that it'll never be the same.  That even getting a ten minute walk a day in will always be a struggle, and with M.S. being progressive, it'll just get worse.

I just got done with my walk.  I made it seventeen minutes!  Woo, go me!  It was hard, and it kicked my butt.  But dangit, I'm doing it!  M.S. can just kiss my dimpled buns.

We're breaking up for good this time.

Toxic relationships are all the same.  You're seduced with comfort and feelings of love.  Then you're left feeling empty and sick.  So why do we keep coming back for more and more abuse?  We know the outcome will always be the same.

What am I talking about?  Sugar.  Oh, the seductiveness of sugar.  Makes you feel happy one moment, sick the next.  I'm on to you, sugar.

Hubby and I sat down to watch the mid-season finale of The Walking Dead last night.  I had already watched it, but it was his first time seeing it.  I won't ruin it with any spoilers, but it ends pretty sad.  Knowing it was coming, and heck, just wanting to "have fun" with the hubby, we both decided to watch and munch on some candy.  What's wrong with that?  Well, if you have severe IBS, Fibromyalgia, and an auto immune disease, a lot.  Sugar is the enemy when you have these conditions.  I've sworn off sugar.  Haven't touched the stuff in a long time.  Not only is it physically painful to me, it makes me shake, sweaty, nauseated and dizzzy, just to name a few.  "Well, a few won't hurt."  And no kidding, it was only a few.  A few Now and Laters, and a few of the small Jaw Breakers.  Seriously, not that much.  All is well, which is why it's easy to get sucked in.  Que just an hour later, and I am writhing in pain.  If you don't have a bad case of IBS, it's just hard to explain how painful it is.  If you've ever seen Along Came Polly, then you'll know what I'm talking about.  I feel like Ben Stiller every time!  It's really uncomfortable, and pretty painful.  And the funny thing is, cheap candy doesn't even taste good.  Really, it wasn't even an exciting experience.  Sometimes I just feel so cheated and left out when my family of iron guts can eat whatever they want, and be no worse for wear.  Sometimes I just have to be stupid and remind myself that I'm REALLY not missing out on anything.  What an extreme lesson to learn.

Today I woke up beyond exhausted.  With auto immune that goes without say, but when you've been poisoned, it gets even worse.  My head is super foggy.  I feel so sick, nauseated, dizzy, and well, no other way to say it than just gross.  I feel really uncomfortable in my body today.  I also woke up with a cold sore.  Haven't had one of these in a really long time.  Boy, is my body trying to tell me its been poisoned or what?

I work out every day, and today was hard!  My heart, let alone my muscles, just weren't in it.  I tried to push it.  I tried not to puke.  I tried not to curl up into fetal position and cry.  "All because of a handful of candy?"  Yes, all because I intentionally poisoned myself.

So again I ask: why do we keep coming back to toxic relationships?  It may feel good at the moment, but really, at what price?  How can feeling this bad be worth it?

Dear Sugar,

It's not you, it's me.  It was fun at first.  We've had some good times, we've had some bad times.  You've been there to comfort me in the past, telling me you're good for me.  Telling me that I need you in order to feel good about myself.  Telling me you're the only way I can have a good time.  Telling me that if something goes wrong in my life, you'll always be there for me.  I've learned to rely on you, depend on you to get me through the best of times and the worst of times.  But the truth is, I don't need you.  I don't need anything telling me I'm not strong without them.  While you have been there to comfort me, its been a very one sided relationship.  While I get momentary relief, you always end up hurting me in the end.  I've given you the best years of my life.  The happy times and the sad.  What have you given me in return?  Nothing but a breeding ground for more pain and suffering.  So Sugar, again, it's not you, it's me.  I'm better than that.  I deserve better than a one sided relationship.  You may not think so, but I am worth it.  I am worth feeling good about myself, and I am worth doing it alone, without your help.  I am worth being loved through the good and the bad times by someone who won't leave me feeling empty or sick.  I have come back to you, even after I said I was done with you.  That wasn't your fault, it was mine.  I promise you now, it will never happen again.  This yo-yo relationship is sick.  And it's over.

Sincerely,

Me

Depression: A Silent Killer

So Robin Williams died yesterday by his own hands.

I was exhausted yesterday.  My kids had managed to eat all the "fast" food in the house.  I didn't want to cook.  I was tired, and in pain.  I chose instead not to eat.  Better to starve than stand on my feet and make something.  By the time my husband came home from work, I passed out from exhaustion.  I slept with my phone next to me, in case anyone texted or called.  Unbeknownst to me, my phone was on silent.  I woke up an hour later.  My husband came in telling me how tired he was.  We had both passed out.  He had had a closing shift the night before, then was at work at five in the morning the next day.  He had had an hour of sleep the night before.  We were both exhausted and felt we could sleep a week.  I was starving, though.  "Let's go get some pizza.  In ten years, when we wake up."  I checked my phone.  Three missed texts.  Two from my sister, one from my mom.  I check my sister's first.  "I just saw on Facebook that Robin Williams is dead!  Tell me this isn't true!!!!!"  Her next text, "Okay, it's true..."  My mom's text read, "Robin Williams is dead."  Well, I was awake at this point.  "What????  Are you serious???  What happened?"  "He committed suicide." My heart dropped.  I was in shock, then denial.  No.  Just no.  Then, DAMN YOU, DEPRESSION!

You see, I have been diagnosed with depression.  Major Depression is the correct diagnosis.  There's depression, and then there's Major Depression.  The severe, suicidal kind.  That's the one I have.  Along with Generalized Anxiety Disorder.  I am on Cymbalta.  It's for my Fibromyalgia pain, and for my depression.  The highest dose you can take on Cymbalta is 60 mg.  That's the highest recommended dose.  I'm on 90 mg.  It still wasn't enough.  I was also prescribed Abilify.  If you're not familiar with what that is, it's an enhancer.  When anti-depressants don't completely help the depression, an additional drug is added to enhance and intensify the anti-depressant.  Abilify made me throw up, made me dizzy, and was just plain misery.  I had to get off of it.  But this is how bad my depression is.  All of this is VERY personal to me.  I wouldn't talk about this if I didn't think it was important, or that it needed to be talked about.  Why am I so depressed?  I have a loving, perfect, and I mean perfect, husband.  I have four, beautiful, healthy children.  Our financial needs are met and our wants, too.  My house is beautiful.  I have a family that loves me.  What could I possibly be depressed about.  Well, I was severely abused.  In every way you can be abused.  And it didn't stop until I married my savior at eighteen.  My doctor told me that as the brain develops as a child, abuse will totally reprogram the brain, changing the chemicals in the brain.  Actually rewiring the brain.  My brain will never be the same again.  Sure, therapy, which I have been in since six, helps.  No doubt about that.  I can learn to help and come to terms with my abuse, which I have.  I will never be able to reclaim my innocence, though.  I will never be able to re-develop my mind.  Learn the things I should have been taught as a child.  I will never be able to get that precious time back.  And that's okay with me.  Those were the cards I was dealt.  I also deal with Multiple Sclerosis, and Fibromyalgia.  Two auto-immune diseases that cause depression.  Auto immune diseases chemically change your hormones, making depression a side effect.  Then there's the fact that you've lost your life.  Things you could once do are no longer a possibility.  M.S. is a progressive disease that will cripple, and eventually kill me.  What's not to be depressed about there?  Still again, that's okay.  These were the cards I was dealt.  I don't want to be anyone else.  Are there days I wish I didn't have all this?  Sure.  Just like you wish you had a better job, or someone to love, or that you weren't fighting what you're fighting.  But you keep going.  What else are you going to do?  But like Mr. Williams, I know those kinds of days, too.

My very first suicide attempt was at six years old.  I tried holding my breath, then choking myself.  It was physically impossible, but I didn't know that at the time.  Another attempt was shortly after.  I had come home from a church activity.  We made mirrors with lace around them that said "God loves me."  When I got home, I tore the lace off and broke my mirror.  "God does NOT love a worthless person like you."  Six years old.  Even now it makes me want to cry.  I have a six year old.  She is hilarious.  She's happy, she loves to play, and enjoys life to the fullest!  It hurts to look at her and know how I felt at that age.  It also gives me great joy to know she will never know the pain I felt.

At the age of fifteen, I caught one of my brothers trying to hang himself.  I cried.  He cried.  We held each other and cried for an hour.  I begged him not to ever do anything like that again.  I told him I loved him more than life itself.  If he ever died, he would be responsible for my death as well.

Suicide attempts were not uncommon in my family.  Every single member of my family has heard the sweet call of the siren.  The call of relief, the promise to an end of pain.  We're all alive today.  One didn't survive mentally, though.  I have a brother that is so medicated and in a mental hospital.  Sometimes he can't remember who we are.

At fifteen years old, my mother gets my brother and I on anti-depressants.  They work great!  I feel better than I have in years!  I have an allergic reaction.  I get off anti-depressants.

Eighteen years old.  I overdose on anti-depressants.  Wanting to die, yet not sure if I REALLY am ready, or if I can actually go through with it.  I am taken to the hospital and pumped with charcoal.  My doctor asks me, "did you know you could have died?"  "No."  "Really?"  When I thought about it, no, I didn't think the dose I took would kill me.  "I guess it was just a cry for help."  My nurse taunts me all throughout the night.  "You were trying to kill yourself, weren't you?"  "No."  "Well if it looks like a duck, talks like a duck..."  She then leaves the room.  My door is propped open, and my curtain pushed back.  Everyone, janitor included, has heard my story.  You see, I'm not allowed privacy.  I could choke myself with the monitor chords.  Heck, it's a hospital.  There's a lot I could do to take my life.  I hear the nurse in a hushed voice call a therapist for a psychiatric evaluation for me.  To see if I need to be admitted to a mental hospital.  I have bowel movements of excruciatingly painful charcoal being removed from my body.  The nurses keep knocking on my door.  "Are you okay?"  No, I'm not okay.  This hurts, and I need time to poop!  Of course they're checking to make sure I'm not hurting myself.  I understand that, so I hold the remainder of my bowels.  My boyfriend, aka, future husband, is there by my side.  He's normal.  He has no idea what I'm going through mentally or physically.  He just holds my hand.  He doesn't even ask why.  He knows the pain I've been feeling.  The therapist comes and asks me questions.  She doesn't think I am a threat to myself or society.  I am released.  At this point, to deal with the abuse I was getting at home, I had become anorexic.  I am 5'6, and big boned, thanks to my dad.  I almost got under 100 pounds.  Anorexia and an attempted suicide attempt.  No one says anything to me.  No one tries to help me.  Not a word is said about either issue.  It's swept under the rug like nothing happened.

I marry my boyfriend at eighteen.  He literally saves my life.  In every way a person can be saved.  We get pregnant after a blissful year of marriage.  We're both twenty, and extremely poor when our daughter is born.  Postpartum depression sets in.  I go on to have three more children.  I deal with severe depression, and my abuse all over again.  Then Postpartum depression.  I have thoughts, pregnant, and after, of driving into oncoming traffic.  Standing in front of an oncoming train.  Overdosing, strangulation, drowning, hypothermia, (we lived in a climate that reached -50 degrees, and that was common!  The weather also wasn't a good factor for my depression.  It was always dark and gloomy.) and carbon monoxide poisoning.  If you'd checked my laptop history, you'd find ways of committing suicide in there.  It was a common search theme.  We were also going to school at the time.  My husband was working on a bachelor's degree, we were living on the planet Hoth, and I had four children in five years.  We starved, we'd been evicted, we had our car repossessed.  My husband lost his grandfather.  I lost an uncle to suicide.  I was diagnosed with both M.S. and Fibromyalgia during this time.  My daughter was born premature and had problems keeping her blood sugars and temperature up.  She practically lived in the hospital the first year of her life due to a lung disease.  Our lives were nothing short of hellish.  Just writing about it, and thinking about it all, I can't believe we survived it all.  It was pretty dang rough.  We finally graduated, though.  At 25, we had that bachelor's and four kids.  Whew!  But we're here now.  And where is here?

Life has become so much better.  Trial wise.  Yet my depression stayed.  I was off and on anti-depressants for years.  "This is just a phase.  Of course I'm depressed.  Times are rough."  So I'd take them, get off, take them, get off.  Until six months ago.  My five year old son has this rope he plays cowboy with.  It was tied like a noose so he can wrangle cattle.  It was perfect.  That's what I'd use.  It came down to the wire, and I told myself I sucked at everything.  I was worthless.  My family was better off without me.  I would be doing them a favor.  In one last attempt, I said out loud, "God, you either send me a sign I'm supposed to be here, or give me the strength to do this.  I have to carry one thing out in my life."  I kid you not, two seconds later, my husband called.  "Hi, hun!  I'm on my way home."  "Um, why are you calling?  You're not supposed to get off work for another hour."  "I know, everything just worked out that way."  "You never, ever come home early.  Why are you coming home now?"  "Just worked out that way.  Lucky, huh?"  "Yeah.... Lucky."  I took that as a sign.  I told my husband when he got home.  He took it as a sign, too.  I got back on my anti-depressants, and I'll never look back.

Diabetes isn't something that comes and goes.  "Oh, I don't need to take a shot, or my pills!  I'm not under stress, and my blood sugars are good."  Um, no.  If my Type One diabetic husband doesn't take shots, he will die.  If I don't take anti-depressants, I will die.  "Yeah, but Diabetes is totally different!  He'll LITERALLY die!"  Right?  Wrong.  Why does he have Diabetes in the first place?  Why can't he just "snap out of it!?"  Well, like me, his body went wrong somewhere.  His body decided to chemically change and cause an imbalance.  Well, my body decided to go wrong and cause an imbalance, too.  It's true, like Type 2 diabetics, there are things  you can do to fight it.  Diet and exercise can keep their blood sugars under control, eliminating the need for pills.  Then there are people like my grandfather.  He's in fantastic shape, skinny, gets plenty of exercise and eats super healthy.  He still has Type 2 diabetes and has to take his medications.  Cancer, M.S., Diabetes, Thyroid diseases, brain tumors, Bipolar Disorder, depression, whatever!  No matter how your body decides to attack you, it is not your fault.  It's the way your body went!  I can't get rid of my husband's Diabetes no more than he can get rid of my Major Depression.  I would tell him to stop taking his shots as much as he would tell me to stop taking my anti-depressants.  Major depression is a disease.  I'm not crazy.  You would never in a million years, upon meeting me, say that I was fighting such a huge battle.  I am seriously hygienic.  I work out, I'm not overweight, I'm a makeup artist, so presentation is a big deal to me.  My nails are always done.  I look very well put together.  I love my friends.  I love to laugh.  I am freaking hilarious!  You would never, ever guess what demons I fight.  Just like I couldn't point out who has Type One Diabetes.  We're all dealing with something on the inside.  Don't judge.  Don't be embarrassed.  If you have cancer, please get help.  If you have depression, please.  I beg of you, get help.  It's a proven disease.  You're not crazy.  You need medication as much as my husband needs insulin.

So back to Robin Williams.  Now you see why it hit me so hard.  Someone I admire, someone who's made me laugh since I was a little girl, someone who's an amazing human being has just died from my disease.  It cut me deep.  I felt like I lost a brother.  One of my own.  I know what he was thinking before he did it.  I know the struggle he was facing.  People said, "there were no signs!  He was happy, surrounded by friends, happily married, and had a beautiful daughter!  He was rich!  What in the world did he have to be sad about?"  You see, disease doesn't work that way.  Cancer doesn't care if you're rich or poor.  Disease doesn't care what you have.  Disease, in most cases, isn't seen from the outside.  So why was he sad?  He wasn't sad.  He had Major Depression.  A disease that kills.

I told my husband how hard Robin Williams death was for me.  I knew his struggle on a personal level.  I was devastated that this stupid disease took yet another one.  I was angry.  Depression just isn't fair.  Such is life.  I wish he had had the tools he needed to fight this.  And even then, we don't know if he did have them and they didn't work.  In a way, I'm happy he's pain free.  I know how much pain he was feeling.  He is now in the arms of his maker.  He is feeling nothing but light and love right now.  No more pain.  But I am also still in the world, grieving with the millions who miss the light he added here.

1951-2014  Rest in Peace, Robin.

If you, or someone you know, needs help, please call the National Suicide Prevention Lifeline: 1-800-273-8255

I'm terrified.

Well, yes, if you didn't get that, I'm scared.  Why?  I just had another Tonic-Clonic Seizure.  Unless you've had one, I just can't describe them to you.  As someone who has Fibromyalgia and Multiple Sclerosis, I know pain.  Well, ya know, we're old friends.  But this?  Owwww.  You've never felt pain like a big mamma seizure until you've had one.  Muscles you don't even know how to use go hard as a rock for three minutes.  Tearing and thrashing.  Hands down, one of the worst things I have ever experienced.  The day of your seizure isn't that bad.  You have your seizure, you're confused, you ask what happened a million times, then you try to act normal.  It's not until the next day that you're really feeling it.  Have you had the flu?  Yeah, I just had it this week.  Sure, your muscles are sore, but once again, unless you've had a seizure, you can't even compare it to anything.  It's like the flu.  Times ten.  Moving becomes soooo labored.  Just from what I've written, I've taken three long breaks.  It's exhausting.  The mental confusion is... really weird.  I can't describe it at all!  Sheesh.  I'll try.  I told my husband last night that it feels like the first day of school.  You're nervous, you're scared, heck, you're even a little depressed.  The recovery, mentally, feels like the first day of school for me, just as the weather is changing.  You may not get it, but I get serious winter blues.  The second the wind shifts and get colder, I can feel it.  And with it comes a sadness that only people who experience the winter blues can understand.  So, the nerves of the first day of school, mixed with the first change of Fall.  If you understand those two, you can kind of understand mentally what I'm talking about.  Depression, fear, anxiety, and just a feeling of being "off."  That's what recovering from a seizure feels like.  Not fun.  Oh yeah, add a huge migraine on top of all that, too.

So what happened, again?  Why did this happen again?  What does it feel like when you're having one?  What does it feel like after?

Well, this time, I was wearing a skirt.  Yay for not being in public!  :)  My husband had just got back from work, we went to Wal-Mart.... to get something... I don't remember now, because that entire day is gone to me.  Anywho, we were on our way home.  I could feel the seizure coming.  Did I know it was a seizure?  No.  Could I feel my brain shorting out?  Oh yeah.  I even told my husband about ten minutes before it happened.  "I feel like I'm shorting out."  We had a church activity the next day, so I wanted to paint my girls' nails.  I painted my eight year old's toes.  I don't remember painting her fingernails.  Probably because I didn't get to.  I began my seizure.  I thrashed and seized up for a good three minutes.

"You had another seizure."  I just stared at him.  "What is going on?"  "You just had another seizure."  "Why am I on the floor?  What happened?"  "You had another seizure."  If you've experienced a seizure before, you know what I'm talking about.  You don't receive full consciousness for about ten to fifteen minutes after you come around.  You continue asking these questions for a long time.  "Another one?  Yeah, I felt it coming on."  You feel strange, but not unable to function.  "Huh, another seizure.  What was I doing?"  "You were painting Alee's nails, and then you started.  Sonja started laughing at you.  She thought you were playing around."  By the time I came back around, both girls had their fingers and toes painted.  I didn't do it.  Now I feel really confused.  "You sure I had a seizure?"  "Yes.  It was just like last time."

Here I am two days post seizure.  I don't even know why I'm blogging about it.  Oh yeah, Adam said I don't remember anything, so I need to go back and read about my last seizure blog.  And write about this one, because I'm sure in twenty minutes, I'll forget this one, too.  Okay, so if none of this makes sense, my apologizes.  It's taking a whole lot of mental effort.

So my muscles.  They feel like... um... Arnold Schwarzenegger just took them for a stroll around the block.  They hurt.  You could say that, but I just wouldn't be doing it justice.  Climbing a mountain when you're out of shape, with a fifty pound backpack might help you understand better.  Then there's your brain.  That's just totally dead.  I can explain that even less.  It's like being sleep deprived for a week.  Trying to think when you're that cloudy.  I don't know why, but I read that depression, anxiety, fear, and all them yummy negative emotions are normal after a seizure, too.  I guess it did take on quite the feat there.  But seriously?  I still kind of need my brain.  If not my muscles, too.  I have four kids.  Ages eight, six, five, and three.  Ya sorta need those things.  Sorta.  So here I am in bed.  Blogging, researching seizures, and trying so hard not to fall back asleep.  Oooooh, it's so exhausting.  And the hubby works today.  Retail slave... Did I just say that?  :)  I am to the point where I really need to be living by family.  I am terrified to be alone.  This is actually my third seizure in... well sheesh, I can't remember now.  Huh, I really can't remember.  It wasn't too long ago, though. Well anyway, yeah.  Family?  I lost my thoughts.  Hahahha, I'm sure it'll be funny to re-read this one day, but now I'm just exhausted!  I know I had more thoughts, but then again, exhausted.

So, um, yeah.  Don't have seizures.  :)  One of the worst things I've ever experienced.  The end.  Back to bed now.  Have a great day for me!

Here is Homer, to show you what I go through.  :)

Tumor and a disease.

These are the newest updates.  A benign tumor was found in my neck.  Doc said he didn't wanna take it out, I said, "okay."  I could feel something bigger in my neck, but I honestly thought it was just a swollen Thyroid.  I watched with quite a calm about me as the technician ran the sonogram over my throat.  Didn't have to be a doctor to see there was a mass there.  What did surprise me was how calm I was about it.  I knew whatever it was, it was gonna be okay.  I am just in so much pain, and so tired, I really don't care what they find anymore.  Glad I didn't stress over anything.  It's just a mass, like I figured.  Then at yesterday's appointment, I was diagnosed with Gilbert's Disease.  Totally not a big deal at all.  It's a genetic disease that makes processing biliruben in your liver harder.  Your biliruben levels are always high.  So side effects are jaundice, fatigue, stomach pain, loss of appetite, nausea and weakness.  You don't treat it with anything, you just live with it.  It's not dangerous, and not really a big deal.  At this point, it's just good to hear more things that make you so dang tired and with so much pain.  I do get tired of hearing, "well I have a friend with Fibromyalgia, and she can do a lot."  Or, "M.S. is okay if you just get the right treatment."  Unbeknownst to me, and apparently my doctor, if you've read about my illnesses online, or know someone who has it, you're an expert.  On the other hand, I also get tired of hearing, "I am so sorry you're going through this."  Chronically ill people only want acceptance.  I am not your friend with Fibromyalgia.  I can't explain why my body takes disease differently than someone you know, or other than what the internet says.  I also can't explain why some people die of disease, and some with the same disease can thrive.  I just don't know.  I also don't know why you feel sorry for me.  My life rocks.  Heck, you could be dealing with stuff I don't have to.  My children are healthy.  Some parents aren't afforded as much.  My husband doesn't lie to me.  He hasn't cheated on me.  He never raises his voice to me in anger.  I am the victim of a happy marriage.  I also don't deal with substance abuse, divorce, alcoholism, death, premature babies, tragic accidents, suicide, etc.  These things don't immediately effect my husband or my children.  These are demons people are facing every day.  So while yes, disease sucks coconuts, so do other trials.  I didn't pick mine, you didn't pick yours.  Don't look at me like I'm diseased.  Look at me like a human being that's just that; human.  So whatever you're going through, just know we're all sucking through something together.  :)

  

The 5 Stages of Loss and Grief.

1. Denial and Isolation.
2. Anger.
3. Bargaining.
4.  Depression.
5.  Acceptance.

You hear about these most often with death.  People who deal with death often read, and hear about these.  "You're just in the angry stage.  This will pass, and time will heal."  It's definitely true that time heals things.  We will never stop loving those who have left us, we'll never forget, and no, the pain never fully goes away.  But there can be peace.  Life can continue.  And then there's disease.

chron. ic
adjective
       1. (of an illness) persisting for a long time or constantly rec-curing.  Constantly recurring.

"You're sick again?"

Constantly recurring. Constantly. It never eases up. Ever. And it makes it that much harder to deal with healing. You keep picking a scab, it'll never heal. Well, ya just can't heal chronic! It's always there.


I had a friend stop by today. A friend who means well. "Maybe if you eat better." "All I eat are vegetables. Yeah, sugar and carbs kill me." And you hear it all. Exercise more. I do. Get enough sleep. I average around 10-12 hours a night. Any less, and my chronic can't handle it. Eliminate stress. I have no life. What stress? Meditate. I do. Try this pill! I have. You need a multivitamin! I know, I'm on 'em! As much as people want to help, they still don't understand chronic. And that in itself is a chronic side effect. :) It got that name for a reason. It's not just for fun. It actually means something.

So the five stages of grief. That's chronic, too. When you're chronic, you can go through those stages all in one day. You at least go through it a few times a year. Family gathering? "I know I can't do this, but screw disease! It's not gonna tell me what I can or can't do!" (Denial.) Oh, guess what? Yes it will. Now you're left behind and in the anger and depression stage. And there is always bargaining. That one will never go away. "Why didn't I take better care of my health?" "Could I have avoided this?" And even, "God, I will do anything. I will be a tool in your hands. Please just ease this cross for me." To answer all of those questions, the answer is no. I didn't cause this. I couldn't have done anything different in my life. And no, God will not ease this. It is not his to take. No amount of bargaining will help. Still won't stop us from doing it. Like I said, it's chronic. Then you have your days of acceptance. "This is who I am! We all have our scars. We all face our demons. This is just the way it is, I can't change it, so I may as well do the best I can with what I have!" Then you have a flare up from Satan himself. You're back in the pissed off stage. The denial stage, the depression stage. Then you feel a little better. Then you start the cycle over. Over and over. And then over again. And it never stops. With some grieving, you may go through this process many times before you begin to heal. But chronic is just a scab. One that keeps getting picked. One that can never heal. Just hearing that puts you through the stages a few times. :) That is one sucky reality. Well, if you couldn't tell, I'm in the angry stage. :) It started with the worst fatigue I've ever felt, followed by serious pain. Then swearing I will go to church yesterday. I have been to church once in the last past four months. Yesterday I said nothing would stop me! Isn't that funny? Me and my silly head, thinking mind over matter really works when your body doesn't. I did not go to church. I said, "fine. At least I'll help Adam get the kids ready." I did bathe them. Then I passed out. I woke up from Adam coming in and getting things for the kids. I forced myself awake to wipe the food off their faces, that they had already accumulated, did their hair, and wiped dirty spots off their clothes. "Hun, I am glad I woke up. I would have sent homeless children to church." Pass out as soon as they leave. Wake up angry I missed church. Angry I promised myself I would go. Angry that my daughter said, "I really hate that you have so much sickness. I wish you could come." Not angry at her, angry at disease. Then the guilt! Gah, it never ends.

So yeah. Gonna lay in bed today. Watch rubbish. Hope my kids can forgive me for being sick. Hope I can forgive myself for being sick. Hope I can get back to the acceptance stage this week. And hope you never have to deal with this. And. Just hope you'll understand and not judge. Denial doesn't help anything chronic. Just makes flare ups hurt more.

Have a great day! May it be pain, fatigue, and chronic free!

Labels suck.

Well, the title says it all.  Labels suck.  They're presumptuous and rude.

Apparently you're not beautiful if you're not thin?

And this guy lives with his mom and plays Wold of Warcraft all day?

She's a rich daddy's girl whose never suffered a day in her life?

What if the girl on the top has a really slow metabolism, has cancer, or ya know, just likes food?

What if the guy in the middle is living with his mom so he can take care of his mother who's suffering from Alzheimer's, works three jobs, and just happens to unwind to W.O.W?

What if I told you the girl on the bottom was brought up in a family of abuse and poverty?  That she fought and clawed her way to get a better education for herself?

And.... what about this girl?  What about me?

Would you guess that this girl went through abuse from three family members?  And all forms of abuse from many family members?  That she attempted suicide many times?  That she thinks she's ugly and chubby?  That she survived a drug overdose?  That she survived anorexia?  That she survived binge eating?  That she survived the worst kind of depression and anxiety?  That she got married at eighteen and was looked down upon by everyone who knew and loved her?  That she married for love, and not because she was pregnant?  That she deals with many diseases, including Fibromyalgia, and Multiple Sclerosis?  That she was told she'll succumb to M.S. by the time she's thirty five?  That her Hypothyroidism makes fighting depression, anxiety, and the image of "fat" even harder?  That she's also raising four, small children?  That she's an amazing person who loves everyone.  That she loves to laugh.  That she loves to sing, read, play video games, watch movies, drink tea, go hiking, spending time with family and friends, texting those close to her, just to check up on them.  That she kicks arse at makeup.  That she always knows what to say, even in awkward situations.  That she can make you feel better and loved, no matter what.  That because she's been through so much, she means it, with her heart on a plate, when she says, "I am so sorry you're going through that."  That she'll never judge you based off what she doesn't know.  That she'll always give you the benefit of the doubt.  That she'll give you the shirt off her back.

She is complex.  She is not, like pictures could suggest, into herself, "too girly", or too good for anyone.  She is real.  She is a person.  She has feelings, and she rocks.  She is me.  No labels.  I am not depression.  I am not makeup, I am not abuse.  I have become this beautiful cocktail of what these things made of me.  I am strong.  I am aware.  I am a fighter.

People are always shocked when I tell them how much disease I have.  "But you're so young.  And you're skinny.   I thought you'd be fat."  Wha...?

Hence the, "but you don't look sick" movement.  It's huge.  Google it.  People who are dying and suffering on the inside, with absolutely no visible signs on the outside.  Would you look at this girl and say she's terminal?  No way, neither would I.  Would you look at her and guess showering is as much of a chore as running fifty laps around a track for you?  That she tires from raising her arms?  That she acts normal around family and friends so they don't say, "you whine so much!"  Or, "no one wants to hear about your pain."  But this tires her out, and she needs an entire week to recover from acting "normal."  Or that she never gets tired of hearing, (that was sarcasm) "but you look so good!"  That is takes her two hours to look like a normal person.

Please don't judge.  It's sooooo hurtful.  It's untrue, and it's not only damaging to the person you do it to, it takes a little piece of your humanity away.  Don't be that person.  Find the good.  Every single person on this planet has something good about them.  Every single person on this earth is going through a challenge.  Think again if you think you're the only one stressed or going through what you're going through.  We're all fighting our demons.  And it doesn't matter how you'd handle someone else's situation.  You've never been in it, so shut up.  :)  They're doing the best they can based off their cocktail life made out of them.  End of story.  Spread nothing but love.  There is no room for hate.  None at all.  And if that's all you have to dish out, and yes, I can say this, because I used to be that person, you'll have nothing but anger, sadness, and fear.  And that is no way to live.  It's very dark and lonely.

Don't judge a person just because their trial is different than yours.

So that "fat" girl?  She starves herself.  She's tired of being made fun of.  That skinny girl you tell to "eat a sandwich?"  She eats like a cow, and can't gain weight.  Whose fault is that?  Yours.

Tonic-clonic/Grand Mal Seizure.

I just had one.  Scariest experience of my life.  Here it is two days later, and I'm still trying to recover from it.  First of all, what is a Tonic-clonic/Grand-Mal seizure?  Since I was the one experiencing it, I didn't know what it looked like.  Well, there's this beautiful thing called Youtube.  I made the mistake of watching it, and it scared me even more.

All I remember was telling my husband I had just bought some super sexy shoes.  Next thing I know, there are six, huge, EMT's standing over me.  "What the heck?"  "What's going on?"  I am deathly afraid of needles, and don't even notice as an IV is jammed in my arm.  I remember my seven year old crying as I'm being taken to the ambulance in a stretcher.  "Alee, don't be afraid.  I'm alright."  Alright.  What is alright?  I heard the words, but I didn't understand what they meant.  "What's the date?"  "Um.... January?"  "Who is the president of the United States?"  "Obama."  Why is he asking me these questions?  "Who was the president before him?"  Oooh, I don't wanna go to the hospital!  It's a Friday night, I'm fine!  "Uh, Bush."  "Do you have any health problems?"  I know this, I know this!  "No."  Wait, that's not right.  There is SOMETHING wrong with me?  What is it....?  "Hypoglycemia."  "I have hypoglycemia."  There, I knew it wasn't that hard to form a thought.  "And...."  Crap, I know there's something else... "Oh, Fibromyalgia, and Multiple Sclerosis!"  Now I'm in the hospital.  I don't know how I got here.  I don't remember coming in at all.  Why am  I here?  Where is Adam?  "How tall are you?"  "5'6."  "Are you allergic to anything?"  What does THAT matter???  Leave me alone, I wanna go home!  "Do you spell that with an "o" or an "a?"  "Um, an "a."  Without any explanation, I'm hooked up to an ECG to monitor my heart.  "Sorry, I kinda need to put them up there..."  "Honey, I have four kids!  I lost my modesty a long time ago!"  Giggles.  Why are we laughing?  There is nothing funny about this.  I am in an emergency room and I have no idea why.  I am getting hooked up to a bunch of stuff and I don't know why.  WHAT HAPPENED?!?!?  CT SCAN.  What for?  MRI.  "Make sure not to move."  "Okay, sure thing!"  Then finally, "your family is here, do you want them in here?"  "Um, yes, of course!"  My husband comes in with red, puffy eyes.  "What is going on?"  "You had a seizure.  Hun, I thought you were dying in my arms!"  "A seizure?"  I don't have seizures.  "Did you call my mom?"  "Yes."  ".....So, what happened?"  "We were just talking.  Then all of a sudden all your muscles locked up.  You were foaming at the mouth and didn't breath there for a while.  You were like that for two minutes.  You don't remember anything?"  "No.  I remember talking to you, I remember the EMT's in the house, and now here I am."  As far as I was concerned, nothing happened.  I didn't feel any different, and I sure didn't remember anything.  Turns out I had a Grand Mal seizure.  It was caused from taking my Tramadol with my anti-depressant.  I was told it was a risk by my doctor, but, "if you've never had seizures before, it should be fine."  Turns out low blood sugars make having a seizure easier, too.  He never asked me that.  So, I was told to go home.  Get off the Tramadol.  Okay.  I did, and I did.  I am no worse for wear, psh, I don't even remember it!  No problem!  My husband's a little shaken up, but that's to be expected!  Whew, we're good then?  No, yeah, turns out we're not good.

Turns out the next day would be a pain like I have never felt.  Not like the flu, not like Fibromyalgia, not like a long hike.  I've done all those before, but have never felt this.  Unless you've actually had one of these bad boys, I just can't explain it.  Your brain is your computer.  Imagine your computer telling you to lock every single muscle in your body.  Every one.  Not just the ones you need to hike.  Every.  Single.  One.  I am two days post seizure and it still hurts to move an inch.  And holy tired!  I have birthed four babies, had the flu, done many exhausting things.  Who knew a seizure was this tiring?  You guessed it, not me!  And that's just the physical.  I wasn't expecting the emotional side of it.  Turns out seizures drain you in every way you can be drained.  Now I'm pissed my house looked like an episode of Hoarders.  No, no one can come when your house is clean.  It's when you don't feel well and you have four kids destroying it.  THAT is the perfect time to come over for an emergency.  When the lady who can't go more than every other day to shave her legs, somehow went a week.  The girl who washes her hair every other day looks like Mr. Wong's takeout today.  In muh Hoarder house!!!  Did I mention that?!  Then the night goes into feeling inferior.  I am a makeup artist.  I take huge pride in my looks.  So being caught off guard, by strapping, muscled EMT's?  My finest hour!!!  Followed, yes, of course it was followed by something worse, a gorgeous female doctor who couldn't have been too much older than me.  That bi*ch was skinny, gorgeous, made up, and did I mention she was a doctor?  After being brought in by Playgirl, I am surrounded by, I do not lie, an entire female staff.  Gorgeous, intelligent female staff.  I look like crap for the guys, fine, but way to make a sick girl feel better.  It was a rather bizarre night.  And ya know what, if I hadn't just had the worst seizure known to mankind, I'd be judging me, too.  But I knew writing about it would help me feel better about a dumb situation.  It always does.  So yes.  Physically and emotionally, one of the hardest things I've ever gone through.  I cried for two hours last night.  Cried over the hairy legs, cried over no makeup, cried over scaring my husband, I definitely cried over my messy house.  But.  I cried most of all, because that was, hands down, one of the scariest things I have ever gone through in my entire life.  I cried for myself, I cried for Adam's boss' daughter who has these, I cried for every person on Youtube that recorded themselves going through one.  I cried over how unfair and unjust it is.  I cried over the frailty of the human body.  I just cried.  I was terrified, and couldn't exactly say why.  Will this happen again?  Will I be alone?  Will my seven year old have to call 911?  These are questions I don't have answers to.  It's the not knowing that scares me.  How dare you be so weak and frail, body?   I feel violated.  I know it's a funny way to describe it, but there it is.  I feel violated.

So here's to my ruining my naughty fantasy with an EMT, Grand Mal!

Next time you send me this....

    

Please make sure I look like my FB profile pic.  And not this...

That would be great, thanks!

Depression.

Why does depression have such a bad reputation?  If you break your arm, you get a cast.  If you're sick, you take Nyquil.  If you're deficient in estrogen, you take estrogen.  What if you're deficient in serotonin?  Oh, well if you're deficient in that, you just ignore it, feel like crap, and pretend it's not there.  You develop Type 1 Diabetes, you HAVE to take insulin.  If you're suicidal,  you HAVE to take anti-depressants.  Ahhh, but there's that dirty little word.  The word that says you're mentally ill.  Mental illness.  When we say that, this is what we think of, is it not?

We think of someone in a straight jacket.  Someone crazy.  Someone who has no control.  That couldn't be further from the truth, though.

Society, history, movies, books and media have helped base our ideas of depression.  Darn you, yet again, society!  You say, "I have Diabetes," and no one thinks anything of it.  You say, "I'm depressed," and then people act differently.  What's even more sad, is that those of us who are on anti-depressants are too ashamed to talk about that, too.  It's this dirty secret you keep to yourself.  No one needs to know I'm crazy and taking medication!  People can be just fine without them, yet I have to rely on this stupid drug to feel like a normal person.  Well lemme tell you something.  Yes, you DO need that drug to feel like a normal person.  And guess what?  THAT'S OKAY!  My husband has to take insulin for his Type 1 Diabetes.  No one ever told him not to take it, lest he feel like less of a "normal" person.  There is NO such thing as a normal person.  Not a single one of us is normal.  There is a Weezer song that I just adore, "We are all on drugs."  We are.  We are all on drugs.  Pharmaceutical, or herbal, almost all of us do things to look better, to feel better, to be better.  We're all on drugs.  There is no shame, and there is nothing wrong with trying to heal what is sick.  I don't make enough progesterone, so I take a progesterone cream.  A silly little hormone.  I am deficient in making it.  So I have to supplement or deal with horrible symptoms.  I take my progesterone.    Mmmmm, nasty side effects all gone.  Maybe if I take anti-depressants I can get rid of my depression?  Mmmm, maybe...

So here I am.  On Prozac.  Here to tell you there is no shame in any deficiency.  After all, we're human, right?  That's bound to happen.  Don't put your life in danger.  Don't let your children go without a mother or a father because you were too embarrassed to get help.

Postpartum depression doesn't mean you don't love yourself or your baby.  It happens because when you're pregnant, your body makes a butt-load of extra hormones.  When you give birth, those hormones drop instantly.  Going from being surged with hormones to dropping is bound to make you feel awful.

Having an illness like me.  Another reason why depression is not something you choose.  I have holes in my brain.  M.S. cuts off receptors to the part of the brain that deals with emotions, resulting in depression.

Maybe you were born with it.  Depression is hereditary.

The point I'm making, is that it's physical.  You didn't choose depression any more than I chose M.S.  It's just another physical thing we have to deal with.  That's all.  There is nothing dirty, shameful, or bad about depression, OR seeking help for it.  It doesn't make you weak.  If I broke your leg and then told you to deal with it, you'd think I was insane.  If you're not making enough serotonin, go see a doctor!  Like everything else that physically ails you.  I have been there my whole life, I understand all the hesitations.  "Well, I don't want him to think I'm crazy."  He's a doctor.  What's embarrassing is a pap smear.  Yet we still get those.  These are trained medical professionals.  No one cares if you've shaved down there, or if you're depressed.  No judgments.  This is what they came into the profession to do.  To help.  No matter the ailment.

I was on Zoloft as a teenager, Celexa for Postpartum Depression, and now Prozac for the M.S.  Yay for anti-depressants.  I would not be here today if it weren't for them.  I feel so much better on them.  There is no shame in wanting to be happy.  Wanting to feel better.  I want to be happy, I want to feel better.  So here I am.  As someone who really understands depression.  There is no shame.

Don't worry.  Be happy.

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!  :)