Saturday, November 9, 2013

Trigeminal Neuralgia and my letter to Pain

Having been diagnosed with trigeminal neuralgia this week I have a lot to process.  This month has been extremely difficult. Some of the most trying days of my life.

It all started oct 10.i got a small cavity filled. Because the inflammation was so high in my jaw joint from my arthritis the nerve was on the edge. Docs think it was just a matter of time before it happened and the dental work triggered it.  I went to two jaw doctors a neurologist and my dentist.  Dentist did a whole workup on me to make sure it wasn't a tooth abscess or root canal needed. Everything with my teeth look great. And my symptoms don't match up with tooth pain either. So all four docs gave the TN diagnosis.

Trigeminal neuralgia is when the nerve on one side of your face is damaged and causes debilitating pain. It is some of the worst pain known to man. It's called suicide disease for a reason.  Because when the pain hits you want to die.

It is burning searing stabbing electrical shock like pain. It aches it lasts and lasts. I have swollen glands all the time now from it.  I get a low grade fever every time I have an attack.  The doctors told me I go into mini shock each time. I shake and get extremely cold and shiver.i get a massive trauma headache for a day or two afterwards. It is truly nightmarish. Neurologist said the attacks are like seizures without the electrical part.

The attacks are debilitating. They are scary.

Treatment plan for me is:
I get steroid/analgesic injections in my jaw joint as needed.
Be on a soft foods diet... chewing and talking are triggers.
I start on neurontin and increase dose weekly until I get to 3600mg a day!! If that doesn't work they will add tegretol.
If that doesn't work next option is a nerve block which can cause numbness and bells palsy! :-(
After that is mri to see if brain surgery will be beneficial.

Here's to hoping the meds work!!!

During one of my pain attacks I wrote a letter to pain. My mom says it's a siloque.

If you don't have much time bail out now cuz its long.  But this will open your insight a little to what the attacks are like and I describe one time when I went into shock and the pain went down a lot. The pain going down on its own like that only happened that one time. Keep in mind I wrote this before i got the diagnosis and before I knew there were other options besides just opiates.


Here goes.

The Frenemy

("You have a jaw worse than a seventy year old" the jaw dr said.  That was 11 years ago. )

For 11+  years I have suffered.
Pain.
Hello Pain.
"We are friends" you say.
Well I say come again another day!
But alas you don't like to go away.

You come to visit when it rains.
You come to visit in the mornings, when I fast, eat jerky, chew gum, talk on the phone.

I avoid skittles and starbursts like the plague because of you Pain.

I pay for splint after splint after splint.
My parents pay for jaw therapy.
A few years later I pay for jaw therapy.
A few years after that, I have grown adapt to you Pain.

You get ornerier in the cold months.
When seasons change you wreak havoc on me.
Yes I think my life is hard.

I mention you a lot Pain. To my family, my friends.
Sometimes I swear because of you.
There are times I'd welcome death because of you.

Old people tell me getting old is hard on the body. ... all the pain.
I smile politely; inside I am screaming, "I UNDERSTAND ALREADY AND I AM ONLY 31!!!"

Dear Pain, I have little hope for the future.
I pray medical technology will save me someday.
My kids pray, "help mom's jaw not hurt so bad. "
My husband's fingers are going to get arthritis from all the neck massages.
I did massages for a year but quit.

I cant afford you Pain.
I am in debt because of you.

Doc says, "what's your long term plan for your jaw?"
"I don't have one," I say.
The'hope platter' doesn't have much on it, thank you for pointing that out doc.

Again I feel is pretty rough for me.
Pain and I are FRENEMIES.
I don't like you Pain, yet you stay.

Then one day. ....I am HIT.
I am SLAMMED.
All I did was get a cavity filled.

Tooth pain hurts anyone. I think this is normal-ish maybe.
My recovery time is longer than most because of my TMJ history.

But this HIT hurts worse than any hurt.
Any hurt I have ever felt or imagined.

I shake.
I cry.
Stop it.
crying hurts worse
Only the left side?

Pain, you have attacked my bone, my muscles.
What are you attacking now?
It feels different.  It makes me BEG for death.
BEG.
Please God take me home!!
Why?!
God, why should any person EVER have to feel this pain?
I think of the POWs that were tortured with bamboo. If they endured, surely I can.

For days I try to hide you Pain.
I cover you up.
I bury you.

But I pay for it. I get nauseas, dizzy, constipated. I cant drive anywhere.
I get too itchy.

I stop.
I can't cover you up like this anymore Pain.
The price is too high.
I cant live my life at all.
I cant deal with the side effects of covering you up.

So I stop.
I stop covering you up completely.

My husband is away.
My parents are away.
My grandparents are away.
I must function for my kids.

BAM!!
Pain, you have returned with a vengeance.
I thought you were really mean when you hurt my bone and my muscles.
But now I know the POWER you have in my trigeminal nerve.

I tremble.
I tense up.
The thoughts of longing for death try to break through.
NO!!!!!!!
Death is NOT better!
LIFE is better!!
I want to love my kids!
I want to love my husband!
I want to serve them!

Pain, I turn to prayer for the millionth time.
But this time it's different.
I pray with HOPE.
I pray with FAITH.
I pray with GRATITUDE.

Gratitude for my Savior who FELT THIS TOO.
That's right Pain!
He knows you too!
And He will help me.
I KNOW He will.

Don't cry.
Breathe.
Breathe.

It is excruciating.
Burning, searing, aching pain.

"You're going to die. You can't do this," Pain says.

Lord I believe! Help me! My soul cries out to my God.

Pain, you lost.

The miracle happened.
First it was in my heart when I decided you and I will not be"Frenemies" anymore.
You are part of my life.
I accept that.

Hello Pain, FRIEND.
I accept you.
Why?
You are confused.

Because my Savior has my back.
That's how I know we can be friends.

That was the first part of the miracle. The part I realized later.

The 2nd part I noticed right away.
The physical miracle.

Pain, I had no medicine.
It wore off too soon and I could not run to it for help for another hour.

My body starts to shiver.
I'm so cold.
My face is burning.
Is this a fever?
I lay shivering, breathing through the hot searing aches.

5 minutes, maybe 10, the 'mini'shock did it's job.
The pain went 70% numb.
Relief!!! Miracle!!!

My energy is drained, because Pain, I fought you.
With the strength of my Savior I fought you.

Days are passing.
Pain and I are friends now.
Pain comes to visit all the time.
Every few hours Pain has something to say.
I calmly listen.
Sometimes I panic.
I breathe.
But I remember Him.
I feel comfort.
I will make it!

Holding hands with Pain, I will walk the pathway before me.
I choose happy!:)
I am happy because I don't have a"Frenemy" anymore, I have a friend.
A friend who reminds me what really matters in life.

In those painfree moments I frollick.
I embrace the full joy of life.
I say nice.
I feel love.

Pain, when you're here, I stand strong because I know who my FOREVER FRIEND is.
We are friends for now, Pain.
Thank you for what I've learned.
I look forward to more lessons.

But one day Pain, we will part.
We will say goodbye.
I will wave goodbye to you.
I will mouth the words with sincerity "thank you"
I will watch you leave.
I will smile in gratitude for our time together.

Then......
I will turn around.
At first I will shield my eyes because of the brightness of the Light.
When my eyes adjust, I will look up into His kindness.
His smile.
His look of approval.
His understanding.
His LOVE.

I will hug Him!
I will finally be able to cry and cry and cry.
I will thank Him for being my Savior, my FOREVER FRIEND.

I love you Jesus Christ. Thank you for understanding me. Thank you for RUNNING TO SUCCOR ME! :')
Thank you for saving me!




Wednesday, October 26, 2011

Do I Have Time To Shower?



This blog is dedicated to Duncle D. ...after all, it was his idea to blog about it, and amazingly enough my desire to blog again is starting to revive. :) Thought I'd start with a stolen idea!! Thanks to M's Splenda.






August 14, 2011, Sunday morning at 3:30 am:



Laying sound asleep (as sound as you can get when you are 12 months pregnant, yet still 11 days away from your due date), and my eyes pop open with a hard contraction.



Meh. (as Skyler would put it)



Another painful braxton hicks I'm sure.



I drift off to "sleep" again.






3:40 am POP, eyes open, another one.



Meh.






3:50 am POP, eyes open, irritation levels rising, another one.



Sigh. Meh.






4 am SIGH, painfully heave myself out of bed.



Thoughts: Okay, this hurts. Feeling the contraction in my butt and thighs, feels real, but I'm not gonna hope. Usually changing positions helps right? I'll go sleep on the couch. That will stop these 'false labor' contractions. Real labor would not be my luck.






4:05 am on the couch, twisting and turning, and yet another contraction. These continued 5 min apart until about 6 am.



In the meantime I gave up on sleeping. It was too early to wake anyone up, besides, how was I to know this really was labor??? Yeah right, I am NOT going to the hospital just to be turned away!!! I am making sure this is the real thing!!



So I putter around the house fixing the plant leaves and staring at the mess of a house I have that I have sworn I will scrub clean Monday and Tuesday so Avynlee will have a clean abode to come home to after the Thursday c-section.






6am-7:30 am, 3-5 minute apart contractions. Still there, pain increasing, shoot, I think this is it. FINALLY it is 7:30 and my kids wake up on their own. I decide, after 4 hours of labor it's time to wake up the hubby.



I announce we better get ready and go to the hospital. I tell Trevor all the evidence and that I have been up since 3:30 am laboring and it's getting worse (grunt, moan, urghhh here's another one). The first words out of his mouth are: "Do I have time to shower?" LOL, for real I thought that was cute, I said, "sure why not? I've waited this long."






He then proceeds to get ready, and I pack the hospital bag I never packed.






I call my parents, waking them up. I explain the situation. I ask my mom to come get the girls so we can head to the hospital.



The first thing she responds is, "Do I have time to shower?" hahhahaa! I say, "yes, take your time, I have already been waiting."



At 10:00 am we are checked into the hospital, after 6 1/2 hours of labor, yes it was real labor, I was dilated to a 4 1/2 and they prepped me for the c-section!! All I can say to myself is: Way to go Mama!!!! And, I really truly am glad that everyone had time to shower first!!! (The picture above is me just before we left for the hospital).

Saturday, November 13, 2010

I'm back!

Hey guys, I am back to the blogging world!!
Guess I'll share a quick story. Last week I went to Fresh Market (I don't choose this store over others but I had three gift cards). I spent an hour finding the things I needed and when I checked out, the debit/gift card machines weren't working. Long story short they didn't handle it very well and demanded I pay with credit card. I left without groceries and was very frustrated. Well I put in a complaint with corporate, and the store manager called me the next day apologizing profusely, and she sent me a $20 gift card in the mail!!! AWESOME!! So Fresh Market totally redeemed themselves.
Okay, check out my family blog cuz I updated that too :)
Missed ya all!! -Brianna

Friday, January 1, 2010

A bit of me......and a bit of the two-headed blog monster

okay here it comes......this has been a long time coming that's for sure!!! :)

Let's start off with some background.... I guess I have some weird part of me that will go through obsessions....wait a minute arent we all like this at one point or another?? ;)

I'll have months where all I want to do are puzzles. I'll do every puzzle I own and go buy a few more and do those. Then I get sick of puzzles (I start dreaming about them), and that obsession goes dormant for another 6 months to 2 years......depending on when I get through all the rest.

Then I'll get in a sudoku obsession and all my free time will be on sudoku....til I get sick of it/start dreaming numbers.....

Another one is scrapbooking......

And blogging got it's obsession era too......I even set up two blogs.....wow!! I'm so awesome!! ;)

And yet another is reorganizing everything in the house (currently on that one).

Around September my new obsession became Harry Potter. I never actually read the series. I read books one and two years back but I never kicked it into 'obsession mode'. So it died a slow death. But I'l tell you what kicked me into obsession mode. I saw the most recent movie half blood prince and I HAD TO KNOW THE DETAILS OF SNAPE....good or bad??? So I told Trevor (this was in September) I was going to read the whole series by Christmas. He laughed and said 'yeah right'. I finished the last book about ten days before Christmas!!!! My obsession and questions satisfied. (And I was dreaming about fighting You-Know-Who every night......all this to understand the pshycological workings of Snape....totally worth it!!!
So to sum it up....I get these obsessive hobbies that come and go and cycle through, and when harry potter took over my life, blogging went out the window.

BUTTTTTTTTTTT There are OTHER reasons why blogging went out the window!! (besides the fact i've had sick kids and a very busy calling and lots of other stuff going on..) But we will address some other reason: And here are my explanations and analyzations of the 'two-headed blogging monster' inside of me. (one head likes it and the other head doesn't yet they are attached to the same body..... just an analogy to explain my conflicting feelings)


it really is great to be in the 'loop' of peoples' lives. Some people you lose contact with if you drop the blogging and/or facebook world. But i don't like being 'bound by the cyber world to know what is going on with loved ones... yet this is the world we live in and it is convenient so even with my irritation of this I still really like it ha ha go figure ;)

I realize how many cute little precious details of our lives and what the girls say and do I record really well on the blog.......I do keep a journal however it seems easier to type
all the nitty gritty details, and i haven't computerized my journal yet, so writing it is cumbersome.

Not only is it nice to keep up on others' lives but it is nice to have a convenient way to let people know what is going on in ours.......convenient.....yet at the same time lonely.....do people REALLY care? If they did they would call.......but we're all low on minutes right? lol :)

Vulnerability is another thing. You put all your heart into a blog or statuses on facebook lol and for all you know a crazy person could be stalking you.......even someone you think you know could be turning crazy.......it has happened you know. And yet it is such a fun way to have a voice!!! :)

"Put all your heart into a blog" Some people really do this. They are genuine on their blog, you feel uplifted after reading their blog (even when they are negative on it) cuz you know they aren't perfect either and yet they keep on keeping on. But there are other blogs that only show part of the truth (not like blogs are supposed to reveal all....nor would we want them to) but you know what i mean, the blogs that you feel depressed after reading, the 'look at me i'm so talented and happy and perfect' blogs. The ones that you read and just felt like you wasted preciouus time reading it. Only to feel inadequate in all your endeavors.

And that brings us to the last point I have about blogs.....waste of time. Or is it? Everything has good to it and everything has bad to it. Blogging does have quite a bit of good in it....the problem I have is that I get these 'obsessive hobby' moments and have a hard time not spending too much time on one thing. Moderation in all things, Brianna, come on it can't be that hard!!! And yet it is for ME!! I feel guilty when I spend time on a "pointless, time-wasting blog" when my kids will only be young for a short while (same goes for any other thing that can possibly be deemed as 'wasting time')......when I need sleep so desperately, when I don't have much free time anyway beause of so many demands with family, community, and church........ but wouldn't it count as 'me' time.........but do i want a 'two headed blogging monster' to take up my precious 'me' time..??

So after all this analyzing.....I have determined to delete both blogs......JK!!!!!!!!! LOL!! total joke!! No I am actually going to keep both blogs because I have been able to record some precious memories and thoughts and feelings that I want to keep recording while my kids are young and I am a young mother. So when someday my girls are older they will have memories to review IN ADDITION to my very down=to=earth personal journal.
There is enough good to blogging that I am going to try and keep it up through all my random obsessive hobbies.......at least one post a month at the least.
One thing I do have to vent.....I AM SICK of SICK KIDS!! That has been one of the draining things I am sick of. Okay, enough of that, we are very blessed and through all our hard times we have been blessed by the sustaining power of the gospel. God always gives us strength even during the times its hard to feel it.
Okay there I got it all out. I've posted a post similar to this before. But guess i needed to rehash it all again ;)

Answers

HA HA that was pretty funny!!

1. Brianna
2. Trevor
3. Trevor
4. Trevor
5. Alivia

No one got them all right but thanks for playing anyhow!!! :D

Sunday, December 27, 2009

Guess who

So I have written a few things down here and there that different members of our family have said at any given time during the last few months. We have myself, my husband Trevor, and my 4 year old who do the majority of the talking. Look at the statements and try to decide who said which. If anyone gets them all right I'll mail them a surprise!! :D

1. It looks like either you have eyeshadow on or your eyelids are slowly dying.

2. "Don't, don't, DON'T!!!" [pause] "Thanks for not don't-ing."

3. Your breath smells like high-octane stomach acid! If I lit a match you'd breathe fire!

4. I don't want to feel your foot cuz it feels cold and thick.

5. Soy milk tastes like beef salad.

Since it is late, I am only putting a few.

Wednesday, August 26, 2009

The Blessing of the Twin Egg

I woke up and wanted an omelet so bad! A FOUR egg omelet, not a three egg omelet. Well, my predicament was that I only had SIX eggs left and needed, and I mean NEEDED to make cookies later on too, and that recipe required THREE eggs.
So I had to settle with a three egg omelet.
To my most PLEASANT surprise, One of the eggs was TWINS!!!! So, I actually DID get a FOUR egg omelet AND my THREE-Egg cookies!!!!!!!!!!

LIFE IS GOOD!!!!!!!!!!!!!!
(even if it is so busy i neglect my blogs ;)