vacay!

WOW!

So this is a Vacay Week!

The plan is that you have three weeks of antibiotics and 1 vacay week.

Well, I haven’t been vacayin’ that much so far!

I usually fly up to DC the Tuesday of my Vacation Week to try out my new med, SOOOOOOO, I have never had a true Vacation. Ummmm.......I don’t know what
dummy, named Brooke, set that up!

Yesterday I actually woke up and didn’t feel like poo! By the afternoon, I had faded back to my old poo self.

But today, ahhhh, today! If all days could be like today! I mean all things
considered, today was great!

I woke up at 9:30 - again, no alarm. Now, in the old days there were no alarms. There were roosters I guess and just plain old sunrise - that’s kinda early. So I guess alarms are better in that respect, but hmmmmm, if there could just be an in-between. What if our days just started when we woke up. Its so much more enjoyable that way. Even being sick, waking up and going to sleep when you feel
like it is pretty awesome.

Oops - you’ll have to excuse my excessive rabbit trailing. I can’t stop. It’s some sort of disease. Now I have two diseases  - rabbit trailing and Lyme Disease. Oh well.

Back to where we were a paragraph ago, I woke up at 9:30 with no alarm. Yum. I stretched and checked all my extremities for pain. No more than usual, a good start. I used my walker and made it to the kitchen. I actually accomplished making a bowl of oatmeal and a cup of coffee and back to bed without spilling! I took all my morning meds, brushed my teeth, and washed my face - I only fell once. Just into the kitchen counter - no biggie. I was so proud of myself. Now comes the hard part. I had to start my IV. But I did it!  By that time, it was time for lunch. I got my grapes, cut some cheese and got back to my bed, again - only 1 fall and no spills. After lunch, I remembered to take all my lunch meds! Surprise! I never remember by myself. Usually Melody of Charles has to make me do it.

You may not think this sounds like a lot, but it is more than I’ve done in ages. I was trembling and weak by the time I finished, but I was so proud that I had done it.
I fell asleep for a nice long nap after that to re-charge, and I was actually not my old poo self when I awoke.

I think I’m getting the hang of this Vacay thing! Now all I need are my big straw hat, my sunglasses, and a glass full of Mepron with a little pink umbrella.

tears

The tears I cry tonite are not my own...


they are in exquisite joy for my friend who is madly in love and just got engaged. The best kind of love.

they are in deep sorrow for my friend, waiting for the man she finds irresistible, who is on a plane that is most likely delayed or rerouted and missing her birthday.

they are in compassion for my sweet husband who is working too hard.

they are in guilt that I cannot help him more.

they are heartbroken for my friend who suffers daily with the pain with unrequited love. By far, the worst kind.

they are in overwhelming thanks for all the friends who have helped us in so many ways.

they are so poignant for all the sacrifices my family has made to care for me. Especially my mom and dad.

they are in immense gratitude to My God who chose me for this battle and continues to provide in amazing ways.

the breakfast menu

the appetizer:

Waking up this fine morning at 10 am to a chilly appetizer of intravenous clindamycin. I mean, who doesn’t enjoy an icy flow of nausea inducing liquid running through their veins to get “up and going.” And by “up and going” I mean sitting up in bed with four pillows rather than snuggled in my pillow cocoon, curled around my cozy body pillow with my covers pulled up to my ears. Hey, but at least I got to sleep in till 10 and just wake up when I stop dreaming, no alarm clock involved. Is there any way I can wake up like this every morning (minus the clindamycin) once I’m better?

intermezzo:

Cherry Pie and Cashew Cookie lara mini bars with iced coffee serve as the intermezzo - the sorbet to cleanse my palette for the main course. I have found that if one takes the Cherry Pie, lays it atop of the Cashew Cookie mini bar, places it gently on a marble surface, (and by marble surface, I mean the palm of your hand,) and gives it one good whack with the palm of your other hand, it turns into a Cherry Cashew mini bar. Yum. A la intermezzo.

the beverage medley:

First in our assortment we have chilled Cod Liver Oil with bright Lemon, whose flavors play off one another perfectly. Followed closely by Liquid Iron with a hint of natural peach-mango, one cannot deny the combination is simply delightful. Last, but not least, we have an impressive bottle of Mepron ca. 2011. Now, it must be said, Mepron is extremely difficult to come by. As any fine bottle, it must be ordered in advance. Then, of course, there is the financial commitment. You would do well to invest in this golden treat before it is completely off the market. Just one bottle of this glorious cocktail will run you about $1,600. No matter the cost, I love to imbibe my Mepron with a freshly pressed apple juice chaser close at hand, as the sun-bright color, gloppy texture, and rancorous odor, only add to it’s highly disagreeable taste.

the main course:

Appetizer, Intermezzo, and Beverages have all passed my lips. My digestive system is a symphony, awaiting only it’s majestic conductor. This fine morning, the conductor is a stunning array of twenty-seven beautiful little circles, ovals, cylinders and various other unnamable shapes. A multi-colored rainbow ranging from ecru and vanilla to goldenrod and ochre, exquisite upon a ginger colored serving platter. These lovely little bites of candy as it were, each play their own minuscule but impressive part in the symphony. They are the high notes, the ones that come thundering down to haunt you, forever. The Nausea and Diarrhea Symphony. Add it to your playlist.

the sky wheel

So much fun!

I had a little pocket of grace Sunday nite.

I felt good.
I had to get out of the house.
Charles, Mikey and Melody took me to ride the Sky Wheel.
Just driving there I was ecstatic.
I couldn’t believe I was out of the house.
At nite.
For fun.
The first time in months.

I couldn’t stop smiling that big cheesy grin.
You know the kind that hurts your cheeks and shows your gums.

The colors on “The Boulevard” overwhelmed me, as did the tourists with their barely clad sunburned bodies.
Neon came at me from every direction, horns blaring their oddly disharmonious sounds. Loud indistinct music intermingled with different languages and interesting accents, like a modern day tower of babel assaulting my freshly awakened senses. Inviting voices yelling at one another from one street corner to another, attempting to grab the attention of the opposite sex with their micro minis and bulging biceps.

Wow now I do sound old.

Our only dilemma, as we wheeled haphazardly down the blvd was Melody’s absolute dread, terror, nay I say petrifaction at the mere mention of heights. Just the thought of the Sky Wheel brought her to her knees with tears to her eyes. She could barely keep one foot moving in front of the other. We tried to keep her laughing, but most of our our attempts at humor fell on deaf ears. The one and only thing that kept her in the game was the fact that I was more like myself than she’d seen in ages.

When we got there Mikey took the reins and pushed me up the zig zag ramp, trying his very best to increase his velocity. Unfortunately, my puny weight overcame his absolutely - it must be said - punier quadriceps. Turning, what was meant to be, in his words, “a roller coaster ride,” into the kiddie train at the mall. (Sorry Mikey, I love you, but the truth must be told.)

Glass on all sides made the views amazing - especially the one I had of the same exact ferris wheel just down the street. I was so ready to ride that one next, until Charles pointed out to his sweet, delirious wife that she was looking at a reflection of the very wheel we were on.

Melody kept her eyes shut 95% of the time, opening them for split seconds at a time to be in pictures or to catch a glimpse of the Blvd. Her very favorite part, besides the part when we exited, was the cold AC in the pod. Before the doors had even opened she was outta there like greased lightning, in a flash, posthaste, like a shot, in nothing flat. I'm telling you, if she could have said "Beam me down Scotty" she would've been out of there before we even started.  I'm so proud of her for going, she made me laugh, even with her eyes closed.

Afterward, Charles and Mikey were determined to find shaved ice. They were like two little kids, skipping down the street, darting in and out between the sunburn striped tourists. When they finally found it, you would've thought they were 10 years old. Charles was jumping up and down like he'd just won a pony. Definitely one of the highlights of the nite. They couldn't eat it fast enough.

For sure. the ride was fun, and just the trip out of the house even better. But the best part of all was the company. The four of us together can’t stop laughing for a second. I am so thankful for friends like these. From Melody facing her fears, to Charles' crazy antics, to Mikey giving his quads a good workout - laughter is the best medicine. I love being with them!

Thank you sweet friends for such a great nite! I haven't had that much fun since I can remember!

new update (sorry I can't think of a cool name)

So I guess maybe it is time for a real update.

I am having a bit of trouble typing and remembering words,

so  - 1. I can’t promise this will make much sense

and  - 2. that I will ever finish or even publish it.

If I am being completely honest, this is a fairly miserable deal I’ve gotten myself into.

Those pesky little ticks that I grew up with ........

I’d like to line them all up, like a firing squad deal,

and blow them away with a pressure washer.

Or maybe a hand grenade.

Nope. Forget all that.

Jack Bauer ........ if only he were around 25 years ago.

MacGyver just wouldn’t have quite cut it.

So, I guess we are well past the ticks.

They bit me and we are onto treatment as you know.

A little catch-up if you’ve just joined us.

We just started month three of a 6 to 12+ month treatment.

I have a central line in my chest.

I have a wonderful nurse named Christina who I can call at anytime and she helps me out.

Each month they change the protocol of my drugs.

This month I am taking 3 IV doses of 2 separate antibiotics.

I am also on 4 other oral antibiotics, as well as a conglomeration of about 75 other pills,

most of which I can’t pronounce, but it’s fun to try :o)

They warned me this was going to be the roughest month so far.

They were correct.

I have pretty bad days, with some good pockets mixed in.

I have a walker to get to the bathroom.

I have a wheelchair for if I go out.

My momma is here right now, and what can I say, there is nothing better than that.

I have an amazing husband who works non-stop taking care of the kids, doing my job and his.

He doesn’t get enough credit.

I have my Melody. She is here whenever she isn’t working and she does everything she can to help out.

I am mostly irrational, crying, laughing, sleeping, or medicating, so come by anytime if that sounds like a good time to you. :o)

octagon

Octagon.

High above my head.

Framing a brilliant blue sky.

Fluffy clouds linger in the slight breeze.

Trees tops wave in and out of the frame.

Facing my God.

Asking why feels childish.

There are massively worse pains

in this chaotic world.

Yet still I ask.

No answer yet.

Singing  aloud “Jesus loves me”

Tentatively at first.

Becoming my heart cry.

Loud and pure.

Again.
Again.
Again.
Again.
Again.

Dry eyes feel peace at first.

Gradually anger fills them till they overflow.

The why becomes more adamant.

Curling fetal towards the ground.

My heart crying WHY!

My words full of anger and despair.

My heart heaving great sobs.

Again, as a child.

It’s not fair!

It’s too much!

I don’t understand!

My tears watering the Earth He created.

Bit by bit the torrent subsides.

The anger begins to settle.

My body slowly unfurls.

Octagon.

High above my head.

Framing a brilliant blue sky.

Fluffy clouds linger in the slight breeze.

Trees tops wave in and out of the frame.

Facing my God.

The question remains why.

The answer this day

Peace. Trust. Determination.

So glad we had this conversation.

I Love you.

a day

Groggy.

Carafate and Synthroid.

Sleep.

Headache.

Use walker to get ready.

Friend comes to clean.

Hallelujah!

Clindomycin infusion.

Legs don’t want to move.

Arms weigh a ton.

Breakfast.

27 pills.

4 liquids meds and 1 injection.

Sleep.
Sleep.

Nausea.

Doctors Appt.

Nausea.

Legs really don’t work.

Charles moves me to the wheelchair.

Legs on fire.

Xithromax infusion.

Lunch.

Only 11 pills this time.

Sweet friend comes to visit.

Lose balance.

Fall to the floor.

Again.

Sleep.
Sleep
Sleep.
Sleep.

Friend comes by.

Nausea.

Sleep.

Dinner.

Cuddle with my babies.

Clindomycin infusion.

Surprisingly only 26 pills at dinner.

2 liquid meds.

Laugh, talk, cry, fellowship with friends.

8 pills this time.

Comatose till it all starts over again.

simply sunday

Sunday morning.

Me on my side.

He on his.

Five pillows.

One for him.

Four for me.

One big, fluffy blanket.

The oldest one

snuggled between us.

The younger

Her head nestled into his shoulder.

Tiny toes wiggling on me.

My nails tickling her bare tummy.

Rubbing the other’s little back.

Bags of cheerios in sticky little hands.

Sippy cups for them.

No yummy morning drink for him.

Ear muffs.

Gasp.

He does not like them.

Deliciousy-o-so iced coffee for me.

Smiling.

Together.

Laughing.

Together.

Talking.

Together.

Being.

Together.

These moments are my heaven.

An hour in this church.

God’s wink to us this morning.

my angel

She masquerades as a preschool teacher. 

Behind that sweet spirit and raucous laugh

with a little bit of sass for good measure.

In all seriousness and honesty.

She is an Angel.

Ask anyone who knows her.

Not someone who just does good things.

But someone who was born to be an Angel in this life.

Beauty beyond belief.

Generosity overflows her.

Heart beyond heart.

God created her that way.

She is my Angel.

Don’t try and steal her.

God has loaned her to me for right now.

She actually knows what I need before I do.

She cleans up after me without a word.

She bathes me.

She dresses me.

She dries my hair.

She makes me laugh when absolutely no one else can.

She braves me during the grumps.

She does so many things I cannot even explain.

She is my best friend.

I love her.

in the trenches

Brooke.

Army crawl.

75 lb pack on my back.

Covered in mud.

Land mines at every turn.

In the trenches.

Stuttering has become the norm.

Names, completely gone.

Words are fleeting.

Spelling tests from elementary school.......did I even take those?

My mind is a whirly, swirly mess.

I cannot write in coherent sentences.

This is all I can do.

Strike 1

I cannot walk.

Actually, I could try.

Bouncing from wall to wall.......lIke a ping-pong ball.

My computer and my Blackberry - completely foreign instruments.

If you get a random text...... ignore it.

Strike 2

My tongue and teeth are turning black.

My knees buckle for no reason.

My muscles twitch.

Sleep. lots of sleep.

Can’t open a bottle of water or childproof meds.

Adult diapers have become a reality.....don’t ask.

Strike 3

Hold up! Don’t call this one yet!!!!!

Vintage Brooke is not a quitter. I will not be this girl!

I am scratching, biting and clawing my way up

one bloody step at a time.

I will not give up.

I will not stop fighting.

I will be standing at the top of those stairs

Clean, well, mind intact, and praising my God for getting me here.

momma

my momma is here. 

I love her just being here. 

Her  presence alone makes me feel warm and cozy.

I love drinking coffee together.

At Barnes and Noble. 

We used to sip our yummy concoctions and indulge in a decedent treat. 

Now that I am gluten, caffeine and sugar free, we sip our plain coffees and skip the dessert....

....come on B&N get on the ball! 

rabbit trail .....sorry.... :o) where were we. Oh yeah.......

B&N, sipping coffee.

Sitting in the café. 

Looking through books and and magazines. 

Chatting occasionally.

Mostly just being together in that comfortable silence. 

One of my fav things I’ve recently discovered that I love is to watch a movie with her. 

Just us.

Especially a romantic comedy. 

Hearing her laugh out loud.

I lay in my bed and she sits beside me holding my hand. 

There is not much better than that. 

Now on the subject of hearing her laugh.

My mom laughs a lot. 

But it takes a lot to make her laugh out loud. 

Mostly she laughs softly to herself. 

So when I can contribute to the sweet sound of her laughing aloud - that makes me so happy.

Our relationship is far from perfect.

Lest you begin to think this a fairy tale..........

Although we have worked many years learning to understand one another.

There are the bad times.

The times like yesterday morning. 

When all was chaos.

My mom was on an important call.

The kids were all over me. 

I was on my IV, and I yelled “I CAN’T DO THIS!!!!”

Followed by slamming doors.

Lots of crying. 

Chaos was finally contained.

Lots more crying.

I finally admitted, “I’m really mad at you.”

Her response,  “I completely understand.” 

All ending with hugs and resolutions. 

Because we have worked hard to understand. 

My momma leaves today.

I can hardly bear the thought of it.

It’s not just about being right beside her.

It is merely her presence. 

Hearing her putter in the kitchen.

Smelling her scent as she walks by. 

The whisper of her nightgown. 

The way the kiddos love on her.

The way I feel knowing she is asleep just upstairs. 

And now that that presence is gone.......

I feel a little lost.

my Father

A sweet little girl sat in the middle of a clean white room. 

A puppy came up to play.

He sniffed all around her.

A red ball rolled out of nowhere.

The girl picked it up. 

The puppy began to whimper, wanting to play ball.

She threw the ball as hard as she could, giggling at the puppy’s delight.

The puppy came racing back, ears flapping.

He placed the ball in the girl’s hand.

As he did, he bit her. 

Just enough to draw blood and make the girl cry out in shock.

She looked at her hand in astonishment.

The girl heard the dog whimper to play again. 

Surely he wouldn’t bite twice.

But bite he did.

He tore skin from her torso,

from her arms, from her legs,

from her head.

Finally he ran away, as if done with her now,

A man stepped from behind an old oak tree.

He was sobbing in great heart-wrenching sobs.

He picked His little girl up into his arms.

She said, “Why did you not come when I screamed?”

The man said, “I was screaming right along with you,

I was gripping the tree so hard as to not come to you.”

“What am I now?” the girl asked the man.

With tears streaming down His face He said, 

“You are becoming who I created you to be.”