Category Archives: Uncategorized

Do You Ever Feel Like It’s All In Your Head??

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Do you ever feel like it’s all in your head?

Like nobody’s listened to a word you’ve said?

They nod and smile and pretend to care,

But you can tell they’d rather not be there!

The doctors tell you there’s nothing else to do.

And you start to wonder if they believe you.

You take pills and pills for everything,

Even for the side effects that some pills bring.

You don’t know why there are so many to take.

The whole damn thing feels like a big mistake!

You pray to God to give you your life back,

As you feel your sanity beginning to crack.

You ask what you did to deserve all of this,

To take the pain away is all that you wish.

The doubt you read on everyone’s face,

Makes you question just how you got to this place.

Did you do something wrong right from the start?

Then the doubt and the guilt flow into your heart.

And now I’ve come full circle to what I first said,

Do you ever feel like it’s all in your head?

JKC

Trigeminal Neuralgia sucks!!!  

So, please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health Topic List”!!! 

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

Taken Care Of By My Four Year Old…

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So, today I was cared for by my four year old son. I woke up in pain, which is not new and he asked his dad (my hubby) to get me some ice. He was lying down beside me, rubbing my arm and saying “don’t worry, it’ll be okay mommy.  I love you.” My hubby had to go to work. Before he left he got me fresh ice and brought up a yogurt tube and breakfast bar for my little man. Then, I had the television set to Disney Jr. and he was playing a game on the iPad. I was half asleep, lying beside him on my ice pack. The whole time I had my arm around him and he kept rubbing it and telling me he loves me and that I will be okay. I have a pretty terrific little boy. He’s such a sweetie. It fills me with guilt…I should be taking care of him! So so hard…

Yep…that was pretty much my day. Nothing accomplished but guilt! Well, I made it through an extreme pain day without completely falling apart. So, I guess that’s something…maybe? I’m feeling super low right now and very unmotivated to write. So, I think this is about all I’m going to write for today. I don’t forsee myself having anything positive to say and I’m in too much pain anyway. Sorry for the boring post! Better then nothing though.

Hey, don’t forget to sign the petition to get the World Health Organization (WHO) to put Trigeminal Neuralgia onto their “Health Topic List” at http://www.tnnme.com

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

Imagine A World Of Fantasy And Dreams

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Imagine a world of fantasy and dreams.

A world where nothing is as it seems.

A butterfly may wink and wave hello.

A flower can chose which colour to grow.

A mushroom tips its’ hat as you walk by.

Walking on the grass makes the dandelions cry!

There are surprises everywhere you look,

You feel like you’ve fallen into a book.

Astonishment shows all over your face,

A bumble bee asks if you’ve lost your place.

Your jaw drops open converying the shock,

It’s hard to believe a bumble bee can talk!

Since magic has created all of these things,

Perhaps it can grant you a pair of wings!

Yes, now you can fly above the trees.

High in the air you drift with the breeze.

It’s nice to let go, to feel so light and free.

To fly above the mountains and over the sea.

You skim along the water where the whales sing.

You can fly anywhere and do anything.

Imagine a world of fantasy and dreams,

Where you decide how everything seems!

JKC

Please go to http://www.tnnme.com to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health Topic List”

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

Sign This Petition Please At www.tnnme.com

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Okay. I’m too frustrated today. I phoned the Dr that I was supposed to see last Friday who ended up cancelling (2days before) to see if she has rebooked me for a new time for my “pain assessment”. She had said that she will get me in as soon as possible, since he was “out of town” on the day of my original appointment. So the new date is April 24!!!! Seriously I am so damn tired of this type of bullshit! Sorry for the language…I think I’m just at the end of my rope!  Hanging by threads only… I couldn’t sleep last night and am exhausted tonight. So, I’m not writing much more tonight. Just one important thing!

Please Please Please go to the following website and sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) onto their “Health Topic List”. (Yes, the horrible disease that I am living with on a day to day basis and constantly complaining about!!) There is no cost involved, just your name and email address is needed to “sign” the petition. They’re at 15,902 signatures. The goal is for 20,000 signatures, so please sign and forward the information to all of your friends and families, to annoy them, have them sign and then forward it on to their friends and families to have them sign and so on and so on. Also doing so will make me smile!!! 😍😍😍😍😍 Lol!!

Trigeminal Neuralgian and Me:

http://www.tnnme.com

There are other ways to support TN research and awareness. There are additional links listed at the end of the petition. Also, if you go to http://www.zazzle.com and enter Trigeminal Neuralgia into their search engine, you can find a variety of purchases that go towards TN research, support  and awareness. But, only if you want to.

But, to reiterate! Please please sign the petition (yes, it’s free!!!).

FIND THE PETITION HERE:

Trigeminal Neuralgia and Me

http://www.tnnme.com

Thanx everyone!!!

Oh and, just in case anyone asks, no I do not make any royalties or anything. I am not a part of these organizations, they just make me happy and the Petition is super important to me. That is all!!

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

And It Just Keeps On Coming

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Pain pain pain won’t go away

It sears and burns my face all day.

It jabs my gums and pierces my jaw.

The constant shocks make my face feel raw.

My nose feels like it’s lit on fire.

The wind stabs like it’s of barbed wire.

It hurts to smile, it hurts to laugh.

My face feels like it’s being ripped in half.

I’m tired to death of all of this pain

And it just keeps on coming again and again.

JKC

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

A Day Of Fire

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A day of fire, a day of pain 

 A day of nothing more to gain. 

 A day of tears, a day of war 

 A day of wishing life was like before. 

 A day of madness, a day of rage 

 A day of rattling the bars of this cage. 

 A day of sorrow, a day of fear 

 A day of hurt for those held dear. 

 A day of torture, a day of screams 

A day of living one of nights worst dreams. 

 A day of guilt, a day of shame 

 A day of cursing this sadistic game. 

 A day of loss, a day of waste 

 A day of yearning for all that’s displaced. 

 A day of fire, a day of pain 

 A day of so much more to gain… 

 JKC 

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

A Slave To Pain

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I’m not sure I have much to say today. 

I’m afraid once more Pain has gotten in my way. 

It stabs at my face and jolts through my jaw,

It sizzles through my head to lay down the law…

Today I’m the master and you’re the slave

I wipe out all other parts of the life that you crave. 

I, Pain, get to chose if we stay or go

I alone take control and run the show. 

You’ll do as I say, you’ll do as I wish,

You will do anything that I have to dish. 

So today you do nothing but cringe and cry

Today I’m the power that you abide by. 

So put down your wishes and shed your dreams

For today pain dictates everything it seems…

JKC

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

A Silly Post…

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I woke last night in so much pain

I could not fall asleep again!

So I decided that I should just write

A post about pain coming in the night.

And by the time that I was done

I got to see the rising sun!

So if you want more from me today

You’re out of luck, I’m sorry to say!

Because my post was done earlier today,

I count it as my writing being done – hooray!!

JKC Hee Hee😜

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

Pain Pain Go Away, Don’t Come Again Another Day…Or Night, Or Ever!!  Just Please Focus On The Go Away Part!!

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Don’t you just hate it when you’re woken up at 3:45AM by horrible pain! Like while you were sleeping, someone snuck into your room and hooked you up to one of those electric-shock-type torture machines. Then, while you slept, they turned it up to the highest possible voltage and flipped the switch and then broke the switch off and turned the cord invisible (it could happen…)so that there’s no possible way to turn the machine off (Insert evil-villain cackle here.) And then, Zap! Zap! Zap! Zap!..you get the picture!  It seems especially cruel to be woken this way when you view sleep as your refuge. Generally when I fall asleep I feel no pain, usually, unless it’s forced its’ way into my dreams, which is still a very different way of experiencing pain. I’ve explained this to my hubby. When I sleep I feel no pain! That is glorious!!  Just those words, “no pain”!  They make me breath regularly again!  This is why I sleep late. It is not because I’m lazy or hopeless or bored or useless or, well, any word that comes to mind when you think of someone excessively sleeping in.  (Do you want to know the funny thing about all of these judgemental thoughts about sleeping in? The majority of them, perhaps even all of them, are what I say to myself!! They do not come from my husband, though I know it can frustrate him, but I’m my worst, or perhaps best, critic…) Anyway, since I do use sleep as an escape from the pain, it is so so awful and frustrating when the pain wakes me up!! (And that’s why I’m bothering telling you so! Okay, what is that from?? I can’t bloody remember and it’s eating at me!!) I repeat, in case my intent wasn’t clear, it is too frustrating, awful, annoying, sad, maddening, etc. being woken up by pain. It pisses me off!!  It feels like one more thing taken away from me!! So, now that I’ve written a minor rant about pain disturbing my slumber, (“Who disturbs my slumber???” Great! Now what is that from??) I will get a fresh ice-pack, rub essential oils on my face, pop some pills, etc. etc. and attempt to fall back asleep. The key word being “attempt”. 

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

Aladdin!!! That’s what it’s from! The “cave of wonders” asks “who disturbs my slumber!” Yay!! I remembered something! (Yes, this does make me excited. When you have memory issues you take what you can get!!). Still can’t recall the first one. I’ll have to ask my oldest tomorrow…

Oh oh!!! Dr Seuss! “And that’s why I’m bothering telling you so!!” From the Sleep Book!!  Whoohoo!!!!!

Pure Love

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In the quiet of the night I cry. 

In the dark of the night I let it go. 

In the stillness of the night I pray. 

In the wake of the night you’ll show. 

You’ll guide me to the space above and between the worlds. 

In the peace of the heavens you’ll guide. 

In the calm of the heavens you’ll teach. 

In the serenity of the heavens you’ll love. 

In the beauty of the heavens you’ll reach. 

You’ll reach out to show me the joy to be found in pure, unconditional love. 

In the truth of pure love you’ll be free. 

In the smile of pure love you’ll be whole. 

In the blessing of pure love you’ll be fearless.

In the glow of pure love I will know. 

I’ll know that the cure of all pain can be found in the honesty and acceptance of pure love. 

JKC

Hopefully one day I’ll get it right, or at least have fun, while about it I write!