Thursday, March 31, 2011


A very good friend of mine (or at least I like to think so) responded to my comment on his blog with the greeting, "Juli of Juliland".....It started me thinking.....yes, yes, I doesn't take much, huh? You can visit UC here.

Anyways. I started to wonder what Juliland would look like.....what would I put into a world made entirely of me.....I shuddered for a moment, laughed and began to compose.....

These were the results:

Football season would last all year.....there would be no Football turning into basketball turning into baseball.....It would just be Fall football, Winter Football, Spring Football, Summer Football....We would have a different league for every season so that the teams and the players didn't get worn out and you didn't get tired of watching the same teams over and over. The playoffs would consist of the champions from each season with the best two in the Superbowl.

No "pop tarts" allowed to sing the National Anthem.

There would be Spark fountains in every town square.

Every town would have a town square because no city would be allowed to grow past the point of the 1950's "main street" type town.

No building could be taller than a tree and for every square foot of concrete there must be an equal square footage of green space. I love trees.

People would not need drugs like xanax or klonopin because life would be stress free. Plus, there would be required "nap and unwind" times during the work day......2pm crash? Hell no. 2pm nap? That's more like it.

There would be no socialized health care.....but there would be real health care with real access. Not the crap that gets pushed off on us. But then again, health care would be purely for maintenance purposes because in Juliland all chronic and genetic diseases have already been cured.

All cars would run on batteries.

All houses would generate their own power.

Families would take pride in the giving of themselves and never ask "what have you done for me lately?"

People would work for what they acquired. No hand-outs. Your place in Juliland is based on your own merit, not because you exist.

Divorce would carry a penalty of would adultery.

Trees. Did I mention that there would be lots of trees. Nice ones too, not just evergreens.....oaks and maples so you could see the seasons change as you walked or rode your bike to the store.

Electronics? Nah....handshakes and handwritten letters would do the trick.....and it would never cross any one's mind that anything else would be better. 

*sigh* I could go on for days......I think I was born in the wrong decade......hmmmmm

I think I'm going to cut this short before I offend someone. :)

My best to you always. ~j

Tuesday, March 29, 2011

Isolation Precautions.

When children are diagnosed with CF, it should come with a warning label.

"Severe self induced isolation possible within moments of walking out of hospital."

Its not only isolating for the child, but for the caregiver as well.

As a mother, I internalize my stress. It is not for my child to see. It is mine and mine alone. *wrong* Her father feels the stress....and it belongs to him. *wrong*

I had a realization today....better late than never, I suppose.

Our stress is the same. We have the same worries. We have the same fears. We both feel hopeless, overwhelmed, and frustrated at times.

Why is this news to me? I'm not sure.

A lack of verbalization? Being completely unable to read his mind? That's a huge disservice to him, as well as myself.

NOBODY can take care of Natalie like I can. NOBODY cares as much as I do. I ALWAYS have to do EVERYTHING on my own......*blah, blah, blah*

I've been traveling the blogosphere for a year now.....searching through support groups.....desperately searching for someone who understood. Trying to find someone who could relate.....someone who was just as scared and just as unsure.... someone to push me through when I was having a hard time or pick me up when I just couldn't do it for myself. I have found some, and I am eternally grateful for them. I consider them friends......However.......


That person is sitting right next to you while you're typing away on Facebook......

That person is in the kitchen cooking dinner while you're watching TV.....

That person sleeps next to you at night.......

There is a good reason why the divorce rate amongst people who are parents of disabled or chronically ill children is so much higher than the national is STRESSFUL. It is HARD. It piles up on top of the rest of everything else and when something has GOT to does.


The simple answer to that question is blame.......

She never does this......He never does that.......I handle all of the (fill in the blank) anyway, Id be better off doing it alone. at least then I wouldn't have to put up with his/her sh!t on top of it.

Ladies, open your mouth.

Gentlemen, open your mouth.

Communicate. Talk. Compliment. Believe.

I've failed at this.....twice. Caitlin and Natalie are paying dearly for my shortcomings.......

Look at home for the answers you need BEFORE you start looking somewhere else.

The grass is not more green. Its just a different shade.

I speak to you from experience I wish I didnt have.

all of my best to you ~ j

Friday, March 25, 2011

Insensitivity and Kubler-Ross

I know that Ive touched on this topic before. I try not to repeat myself too often, but after a year of blogging I suppose that it is inevitable.

I watch Facebook pretty closely. Between loads of laundry, vest treatments, cooking, cleaning, cleaning what I just cleaned over again....anyway, you get the point. As I check in I watch "friends" sit there and throw out "Don't hate me because I'm beautiful!" type comments along with "Hey look how awesome my life is!" comments and I cant help but roll my eyes.

Perhaps I'm a bit guilty of it myself regarding my Advocare postings....but the difference is that I really do want to help....and I really have lost a bunch of weight and I really do feel better....

Maybe I'm being insensitive. Maybe I'm being rude. Maybe I am just....a b*&^h. I dunno. But sometimes I read the stuff that my "friends" with "healthy" children post and I just want to knock the bejeezes out of them, or delete them at the very least. How shallow can you get? Seriously? "Look at me, I'm awesome because I'm on TV and I have a new commercial coming out" Great, good for you.....where was your daughter while you were gallivanting all over creation forwarding your own selfish fame really that important to you? Really?

Jealousy? Nah, I hate cameras. Ask anyone who knows me. Its rare that you find a picture of me...I'm the one BEHIND the camera. Besides, I cant even go on vacation without my me, Ive tried. It was like a 3 day long anxiety attack. Not fun at all.

I just wish that there was some way to take all of these people, put them in a room and show them....really show them how fortunate they are. I wish that they could see how things that they take for granted could be so much more blessed they are to live a free life, truly free, without hoses or masks or machines or pill bottles.....

Kubler-Ross? Anger? Perhaps. Over and over and over again.....





.......Acceptance never comes. I like to pretend that it does. But it just doesnt. I will never accept that this is just the way it is.....there must be something more....there must be a cure.

Thursday, March 24, 2011

Blah, Blah, Blah.....

okay, okay, So I don't feel that bad....but I am exhausted. Trying to keep up with a 20 month old (my niece), Natalie, my 10 year old who has been sick and on antibiotics, my diet and Natalie's treatments has left my brain rather mushy....

Congrats to my sister who went to Hawaii to renew her vows and have a much needed honeymoon....

Now that she is back, Avery has gone home and my house is in some sort of order (thanks J) and all children are accounted for....its time to sit. Sit and do what? I'm not sure. I'm going to figure that out as soon as I get up from this computer. ;)

Natalie's nebulizer finally bit the dust......again. This is the second one in 8 months......I didn't think that it was possible to burn them up so quickly. Maybe we're just lucky like that :)

But on the positive side, we did get an upgrade. Its supposed to work faster than the old one.....we shall see.

That is all for now.....sorry for the shotty writing lately.....I'm going to get it together one day.

All of my best. ~j

Friday, March 18, 2011

The Lioness and the Turkey Loaf.....

I know some of my readers are already aware of the fact that I have started the Advocare 24 Day Challenge. For those who don't, you can visit Advocare's website here.

Today is Day 8. I'm .2 pounds away from losing 6 lbs in those eight days....exciting, right?

However, I'm not even going to lie. I woke up starving. Not regular hungry, but ravenously starving, almost panicked.

I stumbled into the kitchen, half awake, but moving quickly. My eyes darted wildly about....I looked to the left.....Poptarts.....I look to the right....Double Stuff front of me....grab bags of every flavor chip known to man.....I almost lost it. I closed the pantry door quickly.

I then darted to the refrigerator....fresh green beans, whole mushrooms, Romaine lettuce, egg whites.....**ahhhh, there's my food** panic seemed to subside, only to return again by the realization that ALL of these things had to be prepped and cooked....there was NO waiting.....there was no prep work that was SHORT enough.....there simply was no TIME....I WAS HUNGRY!!!!

I continued my silent panic attack until I realized that the answer was staring right at me....It was beautiful. The glimmering tin foil in the refrigerator light shone like the north star......It was Turkey Loaf from last night.

I grabbed the piece of tin foil like it was going to disappear and hurried to the counter....quickly unwrapped it and without a plate, a fork, or even heating it up, I broke a piece off and shoved it into my mouth.....*ahhh!! relief!!*

After a couple of bites, I was then able to gather one was home, no one had one EVER had to know about this little episode.....I would just gather myself....forget about the 4oz of Turkey Loaf and start my morning regimen as one eeeeeevvvvvveeeeerrrrrr had to know.....

Then I realized what I must have looked like.....half awake, hair a mess, in my pj's guarding tin foil wrapped Turkey Loaf like a Lioness would guard her latest kill....and then I laughed.....and then I had to share....

Life is no fun if you cant make fun of yourself and share it with others.....

my best to you guys, always ~j

Tuesday, March 15, 2011

Emerson Drive - moments

So many times......

There have been so many times in my life that I have sat alone and said, "What the hell happened?".

So many times that I have sat and cried wondering when or how things were ever going to change.

I was waiting.....waiting on something, anything. A miracle? A nudge, a push, a SHOVE.....just something, anything to show me that I was doing the right thing....someone, somewhere tell me that I was headed in the right direction.

Eight months ago that shove came.....I was NOT where I was supposed to be, I was NOT doing what I was supposed to be doing....I was maintaining. That's all. Nothing more.

Eight months ago when he told me to leave, a door was opened. My life began again.

Before I say anything more, I must say "thank you" to him for that.....

Today I wake up and I am content. Today I do not dread what the day will bring. Today I do not reminisce about what was or what could have been. Today I look to what CAN be......that is a beautiful feeling.

Perhaps its a fear of commitment. Maybe other people are right when they say that Im better off alone, when I have options. I could probably make arguments either way, based on my experiences and reactions......I dont think that I have commitment issues.....I think I have made poor choices in the past, but I thouroughly believe that to be a thing of the past.

Anyway, why did this come up in the first place?

Very simple.

A song came on the radio today, a song that I used to sing in the car with such vigor, with such belief that my life had passed me by and there was nothing more left to do......when it came on I started to sing, but it held different wasnt about me anymore, and that was a really good feeling. Will post that below, but let me leave you with a thought: Your age, your experience, your past does not have to determine your future. Step outside your comfort zone. Do something that scares you. Believe that anything is possible. If someone had told me a year ago that I would be a homeowner, that my life would look the way that it does, I would have laughed and called them a liar.....Never doubt that life can change in an instant.....It happens every day: the good, the bad, and the scary.

Friday, March 11, 2011

One track mind.....

Everyone tells me I should get a hobby. Get out. Do something.

That's all fine and good. But what no one realizes is just how much I am juggling already.

Daddy here, Daddy there, Caitlin here, Natalie there, my personal life gets shoved to the back burner or gets shoved into the middle of all of it.....add work, bills, taxes and I'm kinda left sitting here saying "hobby what?!"

I do find time for other things.....this blog for one, the CFF and fundraising, and now Advocare.....

The problem is that with so much going on, there is only room for one of these things at a time. My multitasking abilities are at their limit.....

I wish it weren't that way.....but it is....oh well.

Natalie is fine. Caitlin is fine.

I'm working my way to getting fine....Advocare pushing me along. Cardio today. Two 16 hour shifts this weekend, a modified diet, and lots and lots of water.....

I'm just waiting for my glowing skin and my a$$ to shrink by about 6 inches :) hmmmm wouldn't that be nice....I'm having images of my 17 year old body in a bikini on a beach somewhere.....except this time I'll be 30 and not give a damn who's looking at me.....yeah....hmmmm.....okay, okay, I'm lost in that one for a minute :)

I know I'm lying though. The truth of the matter is that no matter how much weight i lose, how many inches are shed....I'm "that girl" know the one I mean.....stick thin pulling at her barely there skin going "omg! i am such a cow!" lol! yeah, its bad. No, I do not have an eating and eating are two of my fav pass times......OBVIOUSLY!

My Wii Fit scolded me this morning for the 1.6 pounds that I have gained that threw me across the BMI line from "normal" to "over weight".....I really wanted to toss the board. The kids would have been a little angry, so I just turned it off instead.

So its about that time again....I am on a regimen.....eating and/or drinking something every 2-2.5 hours...yeah its all laid out for me, hour to I need a egg timer or egg timers even go up to that long???? ahh well.

my best to you ~j

Thursday, March 3, 2011

My new love affair.....

Something new has entered my life. I never thought I could feel this way. Awake, alive......

I was introduced by a friend and fellow blogger, Sarah Jones. Many of you know her as Conner's mom.

I am in love.

Please meet my new friend Advocare. I have fallen in love with Spark. Its part of the Advocare line. It has changed the way I start my day, end my Martha Stewart would say, "Its a good thing."

I am able to get up, get moving and get through my day without that ugly feeling that I want to crawl into a hole....

Its amazing.

Vitamins, minerals, no ugly crash when its over.....AND it tastes good. That is a rare and beautiful combination. Appetite control. Energy. No more dragging myself through the day. Improved mood.

Not only is this good for me, its good for my girls. Waking up in the morning without wanting to pull my hair out, singing on the way to school, treatments done before lunch, a clean house, and a happy mommy the whole way through.....its worth its weight in gold.

I wanted to try it before I started talking about it, and now that Ive tried it, I cant stop talking about it. I am just floored by the difference.

E-mail me if you have questions. I'd love to help you get in on this because I know I will never go back to the way things were....not after seeing how they could be.....

My best to you ~j