Fail!

Okay, so I've already failed at the post every day. I have a really good reason though. The girls have been in a Club Penguin war for the past two days, therefore the computers are tied up....I'm posting this from my iPhone. Sad, but true. Since its their Christmas vacation I'm being a bit more lenient with computer time and they've been apart for nearly a week PLUS they have to leave again tonight....sooooo here I am...posting from my phone so that I don't feel like a total failure, only a partial one. :) much love and happy holidays to you all. See you on the flip side. ~j

A blog post each day through the end of the year....

I'm trying to get back into the habit of being here, so I'm challenging myself to write an entry every day until the end of the year. Just a little disclaimer, weekends don't count....you already know why. Its not for a lack of time or a lack of caring that I haven't posted, I've just been so incredibly tired lately. Last night is a good example of why.

My other half has been away with training for work each week for the past few weeks, Monday through Friday. This wouldn't be so bad if I didn't work 16 hour shifts on Saturday and Sunday. So as of right now, we are working exact opposite schedules and he's not even home in the evenings. If he were home in the evenings, that would probably make things easier as well.......However, he's not....but I'm not going to whine about it......much. Getting to my point.....

When he isn't home, I don't feel compelled to get in my bed. Its almost more comfortable (especially lately) to just sleep on the sofa. So last night, as usual, I didn't make the trek to the bed.....I just stayed put. I finally passed out somewhere before the infomercials but after all of the good programming had come and gone for the night.

I got about two good hours in when the nightmares started. Nightmare, wake up, readjust, roll over, go back to sleep, rinse and repeat.

Finally at about 4 am I woke up in tears, sent a text to my other half apologizing for every personality flaw that had been highlighted in my head for the past couple of hours, cried for a while because I'm a wuss and hormones make me crazy and then decided that maybe the sofa was cursed for the night and stumbled to bed.

Cue Natalie.

Her cough wakes me up and I stumble back out to the kitchen, start filling nebulizer cups and find a comfortable seat next to her so the whir of the nebulizer machine can put us both back to sleep.

Sleep. Cough. Wake. Reposition. Sleep. Cough. Wake. Reposition.

I think it's nap time.

All of my best. ~j

I did it again.

I know, I know. I did it again.

I would apologize....but it seems that I just can't help myself and I hate people who apologize for something and just keep doing it over and over again.

Life is different than it used to be. Things have changed.

I suppose now it's okay for me to tell you why I published some random, obscure post about being Jewish....Why I've been absent....Why I just cant get my brain together.....

It seems that our family will be growing by about two feet......

errr.....let's see.....what other cliche way can we put this....

Oh hell, I'll just say it, I'm pregnant.

I'm excited. I'm worried. I'm tired. I'm preoccupied.

Right now I am sick and so is Natalie. We just had her 3 month check up....she did fabulously. Her FEV1 was 102% and her culture grew only rare amounts of regular staph which is part of her normal flora and a regular sight in her culture results. Problem is that we both have gotten sick since then....I'm hoping that it doesn't turn into something really nasty....she sounds awful, I sound awful.

I was in the L&D department of the hospital Sunday night because of working 16 hours while sick and coughing and I was having regular contractions.....Everything is fine.....I get the same ole speech.....sit down, drink more water, don't hang around sick people......I just wonder how much of this stuff they actually expect me to do.....I mean I have to work, I have to take care of my kids.....water I can do....One out of three isn't bad, right? Oh who am I kidding, its awful.

The other portion of my absence is more personal. I've been making an effort to communicate more with the people who are sitting in front of me, as opposed to those who are not. The unfortunate truth is that I am much better at writing what I think and feel than I am at actually articulating it......When I speak, I come across as harsh, judgmental, a perfectionist.....

CF has made me a bit of a control freak, being a single mom has made me a control freak.....life experiences have made me a control freak and with the recent mass expansion of the family, meaning the addition of two more kids on top of my two as well as our little bun in the oven....I have lost some of that control....I can't do this on my own and I am thankful that I don't have to do it alone.....but, after running my life by myself and on my own terms for so long, its an adjustment to say the least. Okay, okay. Its not just an adjustment, its down right traumatic.

I'm working on it though.....working on everything....one day at a time.....we're going to be okay.

All of my best always ~j

Being Jewish without actually being Jewish.

I'm not sure that I've ever really talked about this part of CF life.....the meat and potatoes of it all....where it comes from (genetically speaking), why it's here (in our lives), etc. etc. etc.

For various reasons, kicking and stumbling through a fat and calories packed breakfast-making effort, trying to wake up this morning, I thought to myself, "Man, it sucks to be Jewish." Now before anyone goes calling me antisemitic or racist or anything else absurd, let me explain.

I am Jewish, apparently. Not just any type of Jewish, Ashkenazi Jewish.....

Who? What? When? Where? How?

Yeah, I wondered the same things. My Grandparents on my mother's side were Italian and Native American/Irish.... on my Father's side its not quite as clear but there's a lot of Native American over there too.....My Mother's side is deeply rooted in the United States......deeply......the first that I can find of a foreigner is an English immigrant in the 1600's.

Anyway, I am rambling, back to my point.

I honestly wouldn't mind being Jewish......I agree with a great many parts of their culture. I love the fact that they get the Old Testament of the Bible and aren't bound to the "If you aren't Christian, there's something wrong with you" mentality that prevails throughout America (or at least  here in the south). I mean who wouldn't want to be Jewish? After all, they are God's chosen people.....

The problem lies in the fact that I am not religiously Jewish, but genetically, I am. Natalie inherited the w1282x mutation from me. w1282x is an Ashkenazi Jewish/Israeli mutation. Okay, strike one, Cystic Fibrosis mutation from that part of the gene pool......Strike two, you ask??? Tay Sachs. Tay Sachs is another genetic disorder carried by the Ashkenazi Jewish genetic line. It is a devastating disease for which there is no cure, very little treatment, which leads to eventual paralysis and death.....at a very young age.....before the child's third birthday.....*sigh*. Strike 3? Does there have to be a strike three??? Isn't that enough??

There are enough problems to worry about in life......like the things that are sitting in your face here and now....Now I get to worry about things that may come, things that may go wrong, things that I am unaware of and unable to control, things that may or may not manifest, that may or may not be passed to my children.....

I feel broken. Genetically inferior. Sad.

I'm going to go find some chocolate.....maybe that will make me feel better.....at least for a little while.

Apologies

I've been avoiding this place....I apologize.

This is a window into my world, I brought you guys along for the ride and then ducked out.....I can't say I'm sorry enough.

Natalie is fine. Caitlin is fine. The house is fine. The job is fine. Everything is fine....just fine.

I have been extraordinarily stressed out though....soon you will all know why, but for now, I'm keeping this one close to the chest, so to speak. The problem is that, ironically enough, this is the one place where I find it difficult to not be totally honest, as a result, I haven't even opened the web page until this evening....or any of my friends' pages.....or any CF pages period. Our annual Halloween walk is coming up and I haven't even made preparations for that....I've just been in a daze. I'm coming out of it though. I promise to do better.....

I love you guys and have missed you all dearly.

Please accept my apology.

All of my best. ~j

Life Lessons: Yoda III

Luke: "I don't believe it!"
Yoda: "That is why you fail."

Life Lessons: Yoda II

Life Lessons: Yoda

Nightmares.

They say that dreams are your subconscious way of working out conscious problems, issues, or fears. If this is the case, I sure wish that I had less baggage and could dream about pleasant things.

As cool and calm as I seem outwardly on a daily basis is as tormented as I am in my sleep.

People, places, ideas.....things that have already been played out in real life....replayed over and over again with different scenarios, different endings over and over and over again. Fears brought to life with the closing of my eyes. Wishes, wants, things that I wish I had the nerve to do, done in an instant only to wake to the realization that my dreams are as close as I'll ever get. Frustrating. Exhausting. Depressing.

I wake in the morning so tired. Half of the time the dreams are so real, it takes me a minute to get oriented and to figure out if it really happened or not.

I'm starting to understand more and more why people need sleeping pills and therapy.

Top ten reasons to suspect that I am not a woman:

I have suspected for a long time that my gender is only anatomically deep. I do not relate to women the way that I do to men. Call me mean, call me insensitive, call me a mind f*&k......whatever you like....but here they are:

TOP 10 REASONS I AM ACTUALLY A GUY:

10.  I do not cry at Hallmark commercials or any commercial for that matter. WTF dude? They're commercials. They're seething low blows by billionaires to suck the last dollar out of the working man's pocket.

9.  The world does not end if I don't have a haircut/style every other month, every six months, or hell even once a year. Its hair. It goes in a pony tail. End of story.

8.  Getting a mani/pedi is not my idea of fun. While necessary at times and a nice treat, the fact that I haven't had one in nearly five years does not bother me in the least.

7.  I think that men look ugly naked. You would NEVER find me at a Chip 'n Dales show.....is that even how you spell that? Aren't Chip and Dale chipmunks?? Just wondering.

6.  While I am busy a lot and most of my TV time consists of Nick Jr., when I do get to watch TV. American Idol, The Bachelor, The Bachelorette, or any other trashy MTV reality tv show is that LAST thing you're going to find on my TV. Ugh! What is up with that?

5.  Though I have mood swings like a woman the LAST thing I want to do is talk about it. Leave me alone. If I'm quiet, there's a good reason for it. Don't pester me until I open my mouth and word vomit comes out all over you and then get upset because of what I said. Let me be, I'll be fine in a minute or two or ten or tomorrow.....

4.  I think guns are cool. So is cammo. I heart cut off BDU's.

3.  I don't like being dirty but it happens. The dirtier I am, the more that I feel I have accomplished.

2.  I think that emotions are highly over rated and get you into trouble and make you say stupid things that make you look silly. Logic is a far better friend to have. The Casey Anthony trial reaction has solidified this belief.

1.  If its football season and you do not watch football or have anything negative to say about football.....you should stay away from me.....because its football season, my season. No, you may not watch something else, no we are not going anywhere unless its to watch the game, no you may not watch something else during the halftime report and yes, I must watch the after game commentary.


So there they are. Sometimes I wonder if I am the only one. Then I remember that I don't care :)

All of my best, always! ~j

Life Lessons: Hitler Incarnate

I rarely post on specifics of work.....aside from the ever looming HIPPA violations that would ensue, I try not to mix work in with my blog. Its just not kosher.....most of the time. But this week something has been on my mind and after nearly a week of trying to process it, I'm finally starting to be okay with it.

A new weekend supervisor came to our little facility a few months ago. I must admit that after the laid back supervisor that he was replacing, I was nervous. His military, flight, and NICU background along with his dry sense of humor left him more of a mystery than I like for people to be. I am excellent at reading people. Something that does not behoove me in my personal life.....sometimes I write it off as paranoia, sometimes its written off as manipulation because I know how they will react before they are put into a situation, but when I peg someone.....its usually correct....I hate it, I hate that I do it, but its just the way it is.  I do it because it makes me comfortable and therefore I know what to expect from them......but not this one. This one I nicknamed Hitler right from the start. I think he wanted us to be scared.....even if it was just for a minute.

Over time he has come to fit in nicely with our rather diverse group of nurses. He even gave up a job offer to go to work during the week (like a real 9-5) to stay with us and do two 16's every Saturday and Sunday. I was impressed and flattered simultaneously. He's grown on me. He could have children my age and therefore he has no problem telling me when I'm out of line or to stop whining or letting me vent when I need to. We are the equivalent of a large family on the weekends.....we are stuck together through thick and thin for close to 40 hours (our shifts never end on time).....We rise, we fall, we succeed and we fail as one.

Last weekend I was on my break and something had happened. I'm not sure exactly what, there is a lot of back and forth conversations that have been going on lately. All I know is that I remember looking at my supervisor and saying "I just don't understand why people have to be like that." and he said, "Well, what do you expect them to be like? People will always disappoint you." My quick response was something along the lines of giving people the benefit of the doubt and then I said, "I don't know, why cant everyone just be like me?" It was a half hearted statement, not really meant to be exactly like me but more along the lines of not so damn mean all the time. Don't get me wrong, I have my moments, but I'm not malicious, if I'm mean you can bet your bottom dollar you've either hurt me terribly and I cant help it or I'm trying to protect your silly ass.....anyways this was all happening as he was walking away from me and he stopped dead in his tracks, looked at me over his shoulder started to laugh and said, "No, no. There is only oooone Juli." I said, "but..." and he laughed again and said, "Nope, nope, just one. One Juli. That's all." with his back to me and index finger held up shaking it  as he had continued to walk away from me, continuing his trek down the hallway.

I just stood there. Shrugged. "Duh, of course there's just one me." Then I started to analyze the way that he said it.....there was a slight hint of sarcasm with an "oh thank God" ring to it.....I was offended for a minute.....but then there was also that stern "this is a lesson you need to learn real quick" lying beneath it all......

Now Im not sure why this particular time that this bit of information struck me in such an odd way. We've all heard this a million times. "There is only one you." "No one can be you." "Be a first rate version of yourself instead of a second rate version of someone else." blah. blah. blah.

But the truth of the matter is that when you sit and think about it.....really sit and think about it.....the idea is pretty darn cool. In this vast expanse of the universe......there really is just one me. Im not so bad. Heck, when you give me the chance Im pretty darn cool, even fun sometimes.....sometimes. There are a great many things that I can change....who I am is not one of them. So from my very own Hitler, I have been reminded that there's nothing more that I need to be other than me.....it just goes bad places, leads to disappointment and a host of other negative things.....gonna try this life lesson on for size for a while.

All of my best. ~j 

Pretending

I'm going to pretend that I didn't see you today when you drove by my house because if I told anyone they would make more of it than it was.....and I know why I saw you....and now you know why things have been the way that they have. It truly has been for your own good.

I'm going to pretend that I don't miss you because the truth is that most days, I don't. I cant stand to be suffocated for long periods.....I lash out at whomever it is that is doing the suffocating. I use that term loosely because quite honestly most people suffocate me. I want people around at my discretion. Selfish, but true. Ive given up so much of my life to the fathers of my girls.....I'm out for me right now....I hope I get past this phase soon.

I'm going to pretend that the thought "He would never stand for this" never crosses my mind, but it does. There have been things that have happened that I know you would not agree with and would have never let happen to begin with....you would have taken care of it....you would have taken care of me. I know you would have. That sucks. Having no one to depend on.....having no one to pick you up, brush you off, and send you back out into the world just a little more sure than yesterday.

I'm going to pretend that what I'm doing is what I want because for the most part, it is. You don't need to be in this circle. No one does. No human being should be subjected to my expectations. They are unrealistic and unattainable. They are the result of two failed relationships and a lifetime of seeing the worst side of people. I'm good at bringing that out. So I suppose this is the eternally cliche "its not you, its me" part of the program.

I'm going to pretend that you understand all of this. I know you don't. I don't understand myself a large majority of the time. Maybe one day I will grow up and figure out who the hell I am.....then maybe things wont be so crazy.....maybe......maybe.

I'm going to pretend that I didn't write this and I'm going to pretend that you're not going to read it because really this isn't for you.....as always, this is about me, its always about me......as much as I like to hide it and as much as I like to pretend that I do so much and I am so giving and so caring and so selfless.....I'm not. I'm selfish. Always.

Do yourself a favor, delete the web address, delete my phone number, I'll block you as a user on FB and then maybe you can really move on. You aren't missing anything. Its not pretty when you look underneath. You should know this by now. Believe it.

ER's are stupid.

I woke up yesterday morning with an excruciating pain in the curvature of my left hip. It was terrible. But I'm not a complainer so I continued with my day. I had the same pain intermittently since Friday so I continued my normal way of dealing with my own health issues.....I just ignored it.

By lunch time I couldn't walk. The pain was radiating around my back and down to about mid thigh. My leg was having waves of numbness and I was nauseated. I was a sad excuse for a human being.

Soooo I did what any self respecting health professional would do. I Googled it.

You would be amazed what comes back in a search engine when you plug in left lower quadrant abdominal pain.....its enough to scare the beejeezus out of the least concerned people. So rather than lay on my butt and die......because according to Google that is EXACTLY what was going to happen.....okay so not exactly but close enough.....I called my step mom and my dad and asked them to watch Natalie while I went to the ER.

By the time I got to the ER I was dying.....my mind has a way of freaking me out so that's why I rarely focus on things for a long period of time.....I can see EVERY worst case scenario.....its just no fun......Anyways. So I was Triaged relatively quickly, but that's about all that happened quickly.

I sat there for hours. Contemplating logging my plight on Facebook....hmmmm.....noooo.....tacky.....looks like you're fishing for sympathy.....So I then thought I would blog about it while I was sitting there waiting to die.....Nope....that's not fun to read......So then I decided to do what everyone else was doing. Just sit there.....and I did....for a very long time.

After 5 hours, multiple labs, a renal CT, a nurse who couldn't give a proper IM injection to save her life and some highly invasive procedures we won't talk about, I left the ER with an apology and some Naproxen. Yeah, like the headache medicine....that's the one I'm talking about.

So there is good news and bad news. The good news is that I have no communicable diseases, my kidneys look fabulous, and I'm not dying after all.  The bad news is that they have no idea what is wrong with me.

I woke up in less pain today than I was yesterday. That's always a good thing, but its not due to the meds....I threw that script away.

My step mom and I joked about arthritis......but now I'm finding the idea less amusing and more probable. Either that or a mysteriously pulled muscle.....I just thought that I would remember doing something like that, especially seeing as how I've been at work all weekend and have been extraordinarily well behaved lately......hmmmm.

I think I'm going to stay away from Google today. Hope your week finds you well. Much love ~j

Summer colds, disease progression, and growing up.

Its that time of year again ladies and gentlemen......time for the infamous summer cold.

I think its starting to set in a bit.

I don't why but I find comfort in our "sick" routine. I can pretty much tell you the month that things are going to start going downhill for each season......annoying, but comforting. How? Simple. I hate surprises and as long as things are going as planned I am a happy mommy....not happy that we are all getting sick, but happy that its nothing out of the ordinary. Its expected. I'm okay with it.

What I'm not okay with is Natalie's increasing awareness of her disease and her symptoms. She woke up this morning and was noticeably "heavy" in her chest. She was having trouble breathing. I could tell. I asked her if she was having trouble she said "yes, its hard to breathe mommy". Heart wrenching. Awful. I hate it, I hate it, I hate it. I'm glad that she is able to tell me but it is just so hard to hear. So hard. I'm trying to adjust to hearing the truth. Sometimes I would rather not.

But as things always go, time passes, children grow. Overall we've been pretty healthy. Natalie will be in school this year. Caitlin is going to be in the 6th grade. Wow. My little girls are growing up.....Its something that I cant reconcile in my head. Caitlin was getting dressed in her room a couple of weeks back.....I was watching her brush her hair and put her earrings on and I just lost it.....I pulled one of those sappy mommy moments.....I just sat on her bed and started to cry. She looked at me confused at first and then said, "Its because I'm growing up huh Momma?" I just nodded and she gave me a big hug and said "Its okay Momma." But its not okay....very soon she will be as old as I am......soon my best intentions will be thrown to the wayside.....soon it wont matter what I had planned, all that will matter is what I did......soon this will all be a memory....soon she will judge me for the life that I gave her.....I just pray that its been enough. I have tried so hard.....I wish it could have been better.....the next few years will be good....or at least I'm going to try and make them that way.

Sooooo anyway....... school is starting soon and I'm going to try to start putting school supplies and uniforms and shoes together. This year I have to do it for two so we are starting extra early. Maybe I'll get some help, maybe I wont. Who knows. But I'm going to do my best....and that's enough....it just has to be.

Happy Summer!

Thoughts

Blank stares, hiding away,
Wandering in the night with little to say.
Lovely thoughts of a horrid past,
Lingering betrayals of a home that lasts.
"Go back!, Go back!" endless shouts.
Overwhelming time, overwhelming doubt.
Living dark, living bright,
Coming undone, doing what's right.
Just how far will you choose to run
From what remains after it's said, after it's done.
Turn! Face! Stand your ground!
Who truly remains when no one else is around?
~Anonymous

Third time's a charm.....or not.

I have tried several times to account for my whereabouts on this blog.

Posts have gotten erased (by blogger) or laid aside for various reasons (lack of desire to incite retribution).

My world is up in the air and in a free fall. I'm not sure exactly what the past month's happenings are going to look like when it all settles out.

I try to keep the "love" portion of this blog to a minimum. Especially where my private life is concerned, unless it directly affects my children or the situation on a whole. So I have kept the last person in our lives quiet.

Until now.

He's gone and that's okay.

What isn't okay is the fact that I have been hiding because of him, because I know that he reads this. Not sure how frequently. Don't really care. But the point is that I haven't been home for more than a couple of hours at a time here and there because of random happenings that make me think that he may be gone, but is always lingering somewhere close....and quite frankly that freaks me the f^&k out. I have had no desire to chart my whereabouts, my thoughts, nor my feelings.

Maybe I'm crazy. I've been accused a time or two.

But until I feel better or some relief, things are going to be kinda quiet around here.

all of my best to you always ~j

Where are you? (again)

BLOGGER JUST ERASED MY BLOG POST!

stupidity, sickness, and losing myself.

I've gotten lost lately.

Regardless of how familiar the feeling may be, it is still slightly disturbing.

Everything that my life once encompassed has changed. Even my beloved blog has fallen to the wayside.

I am feeling closed in, a tad claustrophobic and I recognize the feelings that are hiding beneath the surface.... the urge to run, the urge to break free....all of them lingering there, waiting for an opportunity to come to light.....just waiting to shed everything that Ive wrapped myself up in and just go.

The confusion comes in where I am not sure whether to give my silent stubbornness its day in the sun or choose to suppress it all. I don't know exactly where it comes from and I don't know exactly why......but I have an idea because this isn't the first time I've had to deal with this....last time it didn't turn out all that well. So, for now, I am choosing to suppress and refocus.

I am pretty sure that all of this stems from a single event.....a runny nose.

Just follow me for a second.

Natalie has been fighting off a cold for the past week. I noticed the slightly runny nose last Friday when she woke up. I knew it was coming. I knew it was possible that it could turn out really, really bad. So I upped her vest settings and upped her treatments and times, it was time to start her Tobi rotation, so we did that too.....That held it at bay for a week. I called the pediatrician to try and get her in yesterday but couldn't. Then this morning she awoke to a nasty, nasty cough. Another phone call and to the pediatrician we went.

More medication added to our "daily" list and a round of oral antibiotics.....Natalie's sinuses are her Achilles heel. They are the start of all things bad.....You can bet your bottom dollar that as soon as her nose starts running something ugly is going to follow. Maybe not that day, but one day, and soon.

When Natalie gets sick my "Mommy guilt" kicks in hard. Maybe if I hadn't taken her here, or gone there.....maybe if I didn't have her around other kids.....maybe if I had done more, maybe if I had paid more attention, maybe if, maybe if, maybe if......and I beat a dead horse and lash out..... removing everyone from our bubble until all that is left is me, Natalie, and Caitlin. Right or wrong, good or bad, healthy or not......it is an undeniable pattern.

I don't know what to do with it.

So instead of focusing on such I'm going to start some new allergy/sinus meds, a round of antibiotics, get Natalie well, and see how I feel when this is over and she is better.

My acceptance letter came in the mail today. I will be starting back to college in the fall. It seems like a hollow victory right now, overshadowed by what seem to be impossibly insurmountable circumstances, but I'm trying. I am. Really.

College bound!

I have made many excuses for not finishing my nursing degree over the past 4 1/2 years. All of them revolving around Natalie.

August marks the start of a new era. Natalie will be venturing off to Pre-K....that leaves Mommy home alone with a lot of time on her hands.

What to do? What to do?

My first round at Southeastern was nothing more than an expensive daily party with my friends. Twelve years later I'm hoping to get more out of it.

I submitted my application this morning as a returning student.

A returning student.

A thirty year old returning student.

*fingers crossed* that they let me back in....

I was hoping that after 12 years the computer had forgotten me. It seems not. I hesitantly entered all of my info under the returning student section and hit "submit".....the screen popped up "HELLO JULI". It was almost like a tease, a taunt...."yes, yes, you're back.....we knew you'd be back" with that evil villain voice and the clasping and massaging of the hands......

So now I wait. I wait to see if they're going to give me another shot and wait to see if I can get the student loans to get this done.

My nerves are shot. My brain is fried. But its all okay, 'cause I'm college bound baby! ;)

Its back, with a vengeance.

Its that time again.

CF awareness month.

Its here. Its big. Its in your face.

CF awareness videos. Fundraising push.

LOOK WHAT I HAVE TO GO THROUGH PEOPLE!!! WILL YOU PLEASE PUT DOWN YOUR FREAKING CUP OF COFFEE AND GIVE ME A HAND?????

Too much, I think. However the thought has crossed my mind.

Natalie and I spent the larger part of this afternoon at the park. By the time we were done she looked at me and said, "Momma, no more pictures okay?". I tried to sneak in a couple more, but she quickly gave me the classic Juli look. The "do you think I'm that stupid?" look. So I put my camera in my purse.

I did manage to get a couple in that were pretty good. About to embark on a new CF video of my own.....here's a sneak peak of some of the shots. Some edited, some not.

To post or not to post, hmmmm.

I try not to be too politically charged. It leads to arguments, mass discussions in which you will never get someone who disagrees to see your side. Opinions suck.

That being said, this is my little platform, and I feel the need to say a few words regarding the recent events in Pakistan.

September 11, 2001 We were stationed at Ft. Campbell, Ky but we lived off post. Chris wanted us to live as close to "normal" as humanly possible, away from the uniforms away from the air field, the constant helicopter fly-overs. When he was away from work, he wanted to be away from it. So we had an apartment clear on the other side of town, close to the Red River and downtown Clarksville. Caitlin was just a baby. She had slept late that morning....it was a rare occasion and I was laying in bed enjoying it. Chris had left for work, early as always. PT first thing in the AM meant he was long gone before the sun ever came up. I heard the phone ring. I didnt move. I wanted to rest. The answering machine picked up, but immediately the phone started ringing again. I figured it must be important, so I got up and answered. It was my grandmother. "Ju, go turn on the TV" is all I heard. I asked what was wrong. She was frantic. She instructed me to go turn on the TV and she would call me back. I hung up and stumbled to the entertainment center....The TV came on just in time for me to see the second plane hit. I was confused. I was scared. I watched in horror. Caitlin had woken from the ringing of the phone and toddled into the living room. I scooped her up and held her close sitting and rocking her on the floor with tears streaming down my face. Panic. Chris. Where's Chris. Immediately Ft. Campbell was locked down. No one on or off the base. Streams of barbed wire. Concrete pillars blocked the entrances. Helicopters patrolling the airspace over us. Panic. It was one of the longest day of my life at that time. I stayed glued to CNN all day. I didnt realize at the time that I would spend the large majority of the next 3 years in the same position. I got a phone call late in the evening. It was Chris. "I cant talk long. Im not going to be home." "Ok, if not tonight then when will you be?" "I dont know, Juli. I dont know if I will be home at all." Tears. Panic. Chris finally made his way home the next night. Already he was different. I saw it in his eyes when he walked in the door. He was tired. He was worried. And so the nightmare began.

We lived for weeks not knowing what day or what time he would be leaving. Phone calls in the middle of the night, he would jump and leave, we would say our goodbyes as if he were never going to return only for him to get to come home the following day. This went on for what seemed like ages. The day he really left we were so used to him coming back home....we said our quick goodbyes expecting to see each other again later that night. I went to Wal-Mart for groceries. I didnt go to the Commissary anymore....security was too tight and it took too long to get on and off Post. I left Chris a note on the door telling him where I was and when  I would be home. I was in the check-out line when my cell phone rang. It was my FRG leader, Ashley. She was the one who kept us wives in the loop on what was going on. She simply said, "They're gone." "Gone where?" I asked with such innocence and such naievity that I surprised myself. "Juli, they're gone." she repeated. When she said it the second time I understood what she meant. I sat on the floor of Wal-Mart and cried. I couldn't breathe. He was really gone. The cashier cried with me, as did the lady behind me in line.....I went home and took the note off of the door. I cried as I realized he would never read it. I cried as I realized that he was gone before I ever wrote it. I cried for Caitlin. I cried for myself. I was alone. There was nothing I could do about it. He was just a baby, barely 21. I was a baby, barely 21 myself. War. Seriously? I assumed my seat back in front of the tv, watched CNN, waited for word, waited for something.

You cannot understand the pain, the sacrifice. Perhaps this is all a lie. Perhaps this is nothing more than a political "pick-me-up". Regardless of what I think about our proof, our reasons, the lies and the truths.....Chris was sent there under a single premise. Afghanistan was harboring terrorist, not just any terrorists, but specifically Al Qaeda and OBL.

I was at work when I heard the news. I laughed jokingly with a patient because Obama was interrupting Celebrity Apprentice, what could possibly be this important this time of night...on a Sunday to boot. I shrugged off the announcement. Went into another patient's room....nothing.....another room, news....Osama bin Laden is dead. Another room. Another room. My phone exploded with notifications. My supervisor. I locked my cart and had to walk away. I went out into the night air, turned my face toward the wind and cried, the wind blowing away my tears......he's dead. Its over.

OBL is dead. I do not jump for joy at his physical passing. But for me, this is the ending of a story that started 9 years 7 months and 22 days ago. Unimaginable pain. Change. Divorce. What if September 11th had never happened? Im not trying to throw a party or anything, but dont ask me to be sorry that the son of a bitch is dead. Symbolic or not, he's gone, and that's okay with me.

Borrowed from a friend:

This is a "pick-me-up" for us mom's, but I think that it can be adapted for my friends with CF as well. This is our lot, this is our journey. We are neither foresaken nor alone. We are not weak, we are not less than perfect. We are stronger than we imagine. We are blessed beyond measure, even though its hard to see and hard to understand.

The Chosen Mothers by Erma Bombeck


Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.

As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”

Finally, He passes a name to an angel and says, “Give her a child with cancer.” The angel is curious. “Why this one God? She’s so happy.”

“Exactly” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.”

“But, does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps -”Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side.”

My first, my fabulous, my Caitlin.....

I didn't know life was going to be so complicated.....I would have listened to my parents better and stayed at home longer....."Yes Daddy, I know I'm 35 years old and I should be ready to leave home.....but can't I stay just a while longer....."

Caitlin says she's going to live with me forever, that she's never going to leave home. I told her that I was going to remind her of that statement in 6 or 7 years.......If she holds true to her current statements, I'm perfectly okay with that....I would love to protect her from what the world has to offer as long as humanly possible.....she's had enough reality already.

Speaking of Caitlin......she's turning eleven in a few days.....eleven. one, one. 1-1. 11. Wow.

Caitlin is my world. She is so smart, so understanding, so loving, so caring, so compassionate. She is responsible and neat.....she is quick witted and funny.....She truly is the perfect child. She has started to form her own opinions about things and I openly encourage her to share them.....I want her to understand that she has a voice.....and I want her to use it.

I miss her.

Her father and I share custody so she is with him for a week and home for a week.....its hard on me, its hard on Natalie, and its hard on Caitlin.....but she would have it no other way. Believe me, Ive tried. She wants equal time with us.....she refuses to be the child who barely knows her father and only goes to visit every other weekend (her words).....we have had many discussions regarding the matter......She loves him so.......She protects him with ever fiber of her being......From what, you may ask? The answer is simple. Everything. Anything that she thinks would make him feel bad or sad or upset or put undue stress on him...... money, trouble that she has with her friends, opinions about things that she thinks that he may not like or agree with.....I try to explain to her that that's not her job......I hope he knows.....I hope he understands what she holds inside until she gets home to me.....I hope he understands what she does for him.....Ive tried to explain it to him.....I just don't know.

When Caitlin came along, everything changed. Not in the sense that you may think.....not the money or the fact that there was a baby in the house, that's a given, that all happened too. But the most important change came within moments of her birth.....I became a mother.

Caitlin's father and I were married while he was stationed at Ft. Campbell, Ky. Therefore Caitlin was born in a military hospital....not the nice suites in the hospitals that we have now. There was a labor room, a delivery room, a recovery room, and a post partum room....it was like playing musical chairs. Just when you got comfortable, they would jerk you out of the room and throw you somewhere else.

We were alone, except for my two sisters who were 14 and 17 at the time.....I shake my head in disbelief as I write this.....those people sent a newborn baby home with two 19 year olds, a 17 year old and a 14 year old....wow. Anyways.

I remember them placing her on my stomach.....I remember being surprised by her head full of jet black hair and i remember the confusion I had when she looked up at me with those dark, dark navy blue eyes......I tease her and tell her that she looked like a little Mexican baby when she was born, but she really was beautiful....she always has been.

We were taken to recovery. I remember the colors of the curtains. Chris was to my right, sitting there, there was a phone, I don't know who I talked to or who he talked to but there was a phone call, maybe two.....they took Caitlin to bathe her.....when they brought her back they wouldn't let me hold her because they wanted to keep her in the warmer to help her maintain her body temperature for about an hour. It was the longest 45 minutes of my life.....I just laid there looking at her while she cried. I kept telling them that she was hungry, tears streaming down my face, pleading with them to let me just feed her.....They finally handed her to me.....there was a sigh of relief, an indescribable peace, she was in my arms and all was right with the world again.....

From that moment on it has been she and I.....through her Daddy's deployments to Afghanistan and Iraq, through the divorce, through losing our house in Katrina, through her first days of school, and my first days of nursing school, through job changes and life changes.......She truly is my hero. She is everything that I want to be. I'm proud and humbled to be her mother.

Happy, Happy Birthday baby. Mommy loves you!

Orals and Nurses.....

oral antibiotics.......hmmmm now theres a topic we haven't touched on in a while.

Natalie has been extraordinarily healthy through this winter and spring.....if you don't count the November culture result debacle.....for those of you who missed it, you can refer to the blog post entitled "Homeless with PA. Please help!"

Well our luck ran out a couple of weeks ago. Its taken me a minute to write about it. It was scary and I'm not all about causing an unnecessary uproar amongst the few family members who do actually read what I write.

Natalie had done her evening treatments, as usual.....she went to sleep, as usual, but while she slept, she began to cough uncontrollably, 5 minutes of straight coughing then a reprieve, sleep, snore, then 5 more minutes of coughing......called the pulmonologist....contemplated an ER trip.....something was moving......she couldn't get it out......snoring, retracting while breathing mixed with this strange gasp in between, every couple of breaths.....snore, snore, snore, *gasp*......i repositioned her, tried to wake her (which she wanted nothing to do with) , contemplated extra treatments and just when i couldn't take it anymore.....she started to breathe easier.......she stopped the snore....she had cleared whatever "it" was, and drifted into a deep sleep. This, of course, was just in time for the pulmonologist to return my earlier call.....I told him what I thought, mucus in the upper airways, perhaps a bit of inflammation, moving a plug, her lungs were clear to auscultation anterior and posterior all the way into the bases..... what do i do? His response? "Well it sounds like you have it under control.....follow up with your primary and your pulmonologist."

Aggravation ensued....... Did he realize what I had just been through? How my heart sat in my throat. Did he realize what its like to sleep with a stethoscope around your neck, waiting, double checking, triple checking as if her lungs were suddenly going to be worse than they were 3 minutes prior......

I am a nurse, but you don't trust yourself with your own the way that you do with others.....I have heard hundreds of breath sounds ( I wont be arrogant and say thousands, but theres been a lot in my short nursing stint)......I knew what I was listening to.....I understood it.....but paranoia as a mother is overwhelming....."what if I'm wrong?" "what if i missed something?"

I crawled out of the bed the following morning, stethoscope falling to the floor.......I kicked it.....aggravation.

A trip to the pediatrician......

The nurse placed the stethoscope centered on Natalie's chest......I didn't know what she was doing....respirations? I didn't question her......but Natalie did. She looked at the nurse and said matter-of-factly "Ummm, my heart is on this side." pointing indignantly at the left side of her chest......I started to laugh. It was definitely a moment to remember.....but so sad.....she's four....and she's correcting stethoscope placement for an apical heart rate......The nurse said "I can hear just fine right here. Would you like for me to listen over there too?" Natalie looked at her as if she were retarded and said, "ummm, no."

As my stepmother said, "She's not going to be a firecracker.....She's going to be the whole fireworks show."

Oral antibiotics ordered.

Yucky Pink this time.....it could be worse. It could be Yucky White.

Improvement.

Moving on.......

Round one down.

~j

Adventures in Anxiety

I have never really been an anxious person. Im more laid back, go with the flow, "it'll be a'ight" type.

Yesterday, I took a stroll in the day of the life of the "others".

It sucked.

Heart racing, short of breath, mind going a million miles a minute, diaphoretic, all out panic.....xanax please? Well I have no xanax, never have had one, but from what I hear, that's what I needed.

So what is the one thing that brings me back?

I wish that I had some really smart quick fix, but I dont.

They say you cant know where youre going until you remember and understand where you've been.

I stand on the shoulders of giants.

I have always known this, but yesterday, I needed a reminder.

For those of you who dont know, this is my (short and sweet) story.

I am second born to young parents who divorced early in my life. We were poor during my younger years.....we lived in a trailer on my grandparents land.....we didnt have much but we never hung our heads.....we didnt know we were poor, we were a happy, proud group.

 My grandparents were my focal points, they were my stability.....even today, after so many years of going without them.....they still bring me back to square one.....when I am scattered, when I am scared, when I am at my wit's end......I go home.

I live in "town" now. At least that's what we used to call it when we were young.....there was nothing for miles so when you needed something you "go to town".

So yesterday I took a drive. I went to my parent's house first. Its a nice 25 minute drive out of the city and deep into the country. We are the suburbs, so when you get outside of the burbs you go straight into the middle of nowhere, usa.....here's what I mean:

Now the great thing about yesterday was that it was a beautiful day. A little chilly.....but just nice. A good day for a drive. A good day to open the sunroof, feel the wind, and just go.

After I made it out to my parent's house. Yes, I said parents.....my Dad and my step mom are the people who raised me.....therefore, they are my parents. End of story.

Anyways.  I didnt feel like I had gotten my "drive" out yet. I hadn't finished my pity party just yet, so I drove further. I drove past nowhere....back to the beginning. Back home to my grandparents.

My grandmother has been gone since 2003, my grandfather since 2006. I guess I've never really gotten past it. I need their guidance. I have unfinished business. I needed to see them....since that wont happen, I got as close as I possibly could.

My grandparents owned a restaurant....we were raised in it. Took naps in the corner on blankets....did our homework at the table in the corner.....ran around the bar playing chase before the walls were complete....it was home too. I started waiting tables and washing dishes at an obscenely young age. But as my PawPaw would say, I learned the value of a dollar. It burned in 2007 after a freak mid-day storm landed a lightening bolt in the storage shed....the fire spread quickly. There wasnt much left to do  afterward but gather what we could and move on. Even so, there are pieces of my grandparents still there. And so there, I went.  My PawPaw's roses still bloom through the weeds..... his cactus that he brought back from a roadtrip to Mexico (or so the story goes).....his peach tree still blooming, his pride and joy.....oh how he loved that peach tree. He used to get so mad when the patrons of the restaurant would pick his peaches.....

A trip to the cemetary, a drive past my PawPaw's cypress trees that he planted....

Yes. That says 1899.

A drive to the church that he loved so much.....the place that used to drive my MawMaw crazy because my PawPaw would make her help him cook every 5th Sunday as if he were the only one bringing food.

So that's it. That's all that's left. Moments. Memories. Pieces of my grandparents. Some flourish still, some a fraction of what they once were.

But what this really is.....is a reality check. A reason to be grateful.....I truly stand on the shoulders of giants. People who were so strong willed, so hard headed, so hard working......people who went through more than I ever have or ever will......and they came out on top.....So can I.....if I just remember....

 

Random things Ive learned in the past 21 days:

I've never had a "weight problem" per say. As much as I would like to down on myself (one of my fav pass times) and say that Ive always been a cow, sadly, I cannot.

I have my grandfather's tendencies to be a tad lanky and while I have no problem getting curves.....its never really gotten out of hand.

That being said, my last 21 days on this diet has taught me a lot about weight loss, eating, and habits.

So here goes.

My top ten things you should know while dieting:

10. You must sleep to lose weight. Not just regular sleep, but all out let your body rest.....You starving for goodness sakes.....LET YOUR BODY REST!

9.  You must eat to lose weight. The moment that you say "Oh, I'm just not hungry." Is the moment that your body realizes that its starving and holds on like hell to every smidgen of food you put in your mouth.

8.  You must have a Teflon coated pan if you wish to eat....that and A LOT of baking dishes.....

7.  Dieting requires cooking. If you do not like to cook. You should not diet. Eating out is like diet murder.....only with slow and determined torture beforehand  and afterward.

6. The world does not care if you are dieting.....they will eat what they want anyway and they will do it right in front of you.....

5.  The Reese cups are not going to magically hide themselves in the fridge. The ice cream sandwiches do not magically walk back to the store. The "Natalie" food does not become suddenly unnecessary and disappear from the cabinet.

4.  Generic brand items are good, but not always comparable. Generic Pam sucks. Refer back to #8

3.  Egg whites are a good choice in breakfast food while dieting. However, if you want to eat 2 egg whites, you should make 3, if you wish to eat 3, you should make 4 and so on and so forth. The reason for this is that AT LEAST one whole egg white is going to stick to the bottom of the pan. Please refer back to #4 and #8.

2.  Dieting does not suddenly cure your lazy streak. You still have to make yourself get up and do something....a most unfortunate realization.



AND FINALLY, MY #1 LESSON IN DIETING........***drum roll please***



1.  Scales are the invention of the devil. They taunt you. They stare at you, tease you.....and when you finally give in and step on them.....they tell you what a loser you are. My advice? Throw them out the back door.....or even better, don't buy one in the first place.

So am I a little bitter? I don't know.

 I have hit that "over 30" point in my life. The place where people tell you that weight loss is nearly impossible. Your metabolism slows to a near standstill.....the world falls apart around you. Wrinkles come. Collagen is lost. Where the ghosts of your past sneak up on you and suddenly appear all over your face......

Don't get me wrong. I don't mind getting older. I just never thought it would be me doing it.

Diet with care. ~j

Juliland

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 know...it 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 deportation.....as 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

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.......

WAKE UP MOMMAS AND DADDIES!!!!!!

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 average......it is STRESSFUL. It is HARD. It piles up on top of the rest of everything else and when something has GOT to give.....it does.

Why?

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

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 agenda...is 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 kids.....trust 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 difficult....how 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.....

Denial

Anger

Bargaining

Depression

.......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.

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......one day.

All of my best. ~j

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 Oreos.....in 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**...my 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 myself....no one was home, no one had seen.....no 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 usual.....no 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

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 meaning....it 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.

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 back.....sorry.....got 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"....you 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 disorder.....cooking 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 hour.....man I need a egg timer or something.....do egg timers even go up to that long???? ahh well.

my best to you ~j

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 day.....as 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 

Ducking out.....

I don't know where Ive been. Checking in on my blog as a reader more than the author, I suppose. Expecting the pages to write themselves....expecting my thoughts to magically appear on screen.....yeah, well, it was a nice thought anyway.

Natalie's percussor is a general success. She doesn't mind the machine and learned how to turn it on, proper placement, and to go find a "blankie" to wrap herself in by the end of the first day. She was even asking for more treatment time.....*score*

Our clinic appointment was a success as well. She's gained three pounds in the last two months which throws her into the ***72nd*** percentile for her weight. wooohooo! yay for 6 pieces of bacon at breakfast, heavy whipping cream, and McDonald's :)

All of this very good news was followed up by a clear culture result.....that's two cultures now that have been negative for PA. Wooohooo! (again)

So we are doing well, and that makes for a happy mommy.

I'm sure everyone knows by now about the excellent results Vertex is reporting for VX 770. Natalie doesn't have the mutation needed to benefit from this drug, but its success is more than whether or not Natalie gets it....its about a doorway....an opening....a beginning.....proof that we are on the right track.....and hope, hope that within Natalie's lifetime Cystic Fibrosis will be a disease that you "live with" not "die from".....like Diabetes or something.....maintenance meds and maintenance treatments, diet, exercise.....hmmmm what a thought.

I am going to leave this post here. There are groceries to be gotten, laundry to be put away, dishwashers to be unloaded, floors to be done, a little girl to be chased....and so my day starts.

my best to you. ~j

Hellooooo ElectroFlo 5000.

Okay, Okay. So now that I'm done with all of the girly griping, sorry, I digress. Let's move on to more important things....Like airway clearance. Yaaaaay!

I have been hearing about percussors and flutters and acapella since my debut on the scene of the online CF community roughly a year ago. (give or take a week or two).  As time has gone by I have increasingly questioned the efficacy of The Vest. Dont get me wrong, we still use it religiously, but its just one of those things that you wonder about. It never elicits a cough, how much can it really be moving?

So with this in mind and a couple of references to this device by some others, we ordered the ElectroFlo 5000. Its a percussor. Its supposed to be closer to manual CPT than The Vest. Its supposed to be amazing. We shall see.

The ordering process was super easy and the people at MedSystems Inc were very nice. I was on and off of the phone in a matter of 10 minutes, max. This is quite possibly because we are paying for this piece of machinery out of pocket. I think that if our insurance had covered it, it may have been a more involved process. The total cost is $2750 and we have 30 days to decide whether its something that is going to be helpful or useful for Natalie.

Quite frankly, I don't care about the money. I care whether or not this thing is going to help. It supposedly allows for a more focused therapy in the places that you need it. It supposedly penetrates deeper than The Vest vibrations. That would be nice. Natalie has some areas in her mid lobes that are deep, they are only visible in the lateral  view of her CXR....

I'd love to have a crack at them with a 3k handheld vibrating machine.....and it looks like tomorrow I will be getting the opportunity.

In the midst of all of this I realize that I am getting excited over medical equipment. I also realize that I am getting excited over spending close to 3k on a handheld, vibrating piece of metal and plastic.

Now those are the true joys of CF....the moments when you realize you live in an altered state of "normal", and you're completely okay with that.

 Because the truth of the matter is that I would rather my altered state of normal over the alternative any day of the week.

My best to you. ~j

Well that didnt take long.....

It always amazes me how women can turn something good into something so terrible soooo very quickly. I don't mind taking some flak for this one, it is what it is.

Remember that group I was talking about? Yeah, total disaster. My way, your way, this way, that way. My way is the best and your way is uneducated. Ugh!

I cant take it.

This is why CF continues to be such an isolating disease.

Between the computers and the Internet, between Facebook and Twitter, between here and there.....somewhere CF should be getting its ass kicked and the isolation SHOULD be minimal.....but its not because no one can simply say "Hey, I didn't know about that." or "We don't do things that way, what's up with that?" without being called uneducated and ignorant.

I love my bubble.

You guys know this.

I ventured outside my bubble and, once again, I was reminded exactly why I don't go there.

I am not the "i am woman, hear me roar" type. I don't side with the feminist movement, I get a lot of ugly looks because when things get petty and catty my favorite thing to do is shrug my shoulders and say "f*&king females"....

So I'm going back to my bubble. A place where my daughter's weight is always on target (even though I always want it higher), a place where she has never been hospitalized (Thank you God), a place where we work out the kinks in her care with determination (and yelling and tears) and out of love....and that is good enough.

My bubble is good enough.

a moment.

I am not strong, though those who know me best would beg to differ.

I am insecure, though my closest friends would never describe me that way.

I worry constantly....but the people around me rarely catch wind of such nonsense.

To everyone else I'm "her". I'm your "go to" girl. I have all the answers and if I don't I'll find them or at least give you a strong opinion of what I think about it. I am decisive. I don't stop. There is no room for failure, there is no room to hesitate.

Its exhausting.

So when I'm alone and there is no one there but me.....what is left?

Questions, anxiety, fear, sadness.....a hole where a complete human being once was. CF has taken a lot from me, but it pales in comparison to what it stands to take from my daughter.

I had a moment today....a moment where it almost overwhelmed me.

I went to the pharmacy to get all of Natalie's medicine. I decided to refill a few early so that there would be no running back and forth to the pharmacy this month. One trip to make life just a little less hectic.

As the lady behind the counter piled them one on top of the other, box upon box upon bag, out of the corner of my eye I caught the wondering stare of a man standing next to me. As I held Natalie in my arms, her head on my shoulder, the lady behind the counter asked the date of birth to confirm the prescriptions....."11, 10, 0, 6" I responded. I saw the mans eyes turn to Natalie in a questioning manner, and I looked away to complete my transaction. As I was gathering the bags of medicine to leave he looked at me and asked, "Mam, do you need some help?". I froze. I teared up, and I said "No sir, I'm fine. Thank you. I think Ive got it."

I know that he meant help with the bags....but it just hit me.

How many times do I say "no, I'm okay. Really, Ive got this." and the truth is that I don't "have" anything....I am restless. I am aimless. I am lost. I am putting one foot in front of the other in the best way that I know how in order to provide for my children....but I keep going. Keep pushing. Keep fighting. When there is every reason to fall apart, when everyone would understand if I just stopped and took a break or a vacation or a evening to go get a haircut or my nails done....if i would just take one week to only work my scheduled days and not pick up any overtime.....but I don't, and I wont. Its not who I am, right? Or is it?

So the question becomes, what defines a person?

Is it their thoughts....the never ending internal dialogue with yourself, the one that tells you you cant, you aren't good enough, its not a good time, its too expensive, whats the point, and every other excuse that exists on the planet.....

Or is it your actions? Is it your response to a situation that defines you, What happens when you are faced with the worst critic on the planet, yourself, What do you do?

This is one that I wont pretend to know the answer to.....but I sure hope its the latter of the two.

~j

CF Momma stage fright.

I am not the most forward human being on the planet.

Doesn't make much sense does it? After all, I have a blog....my fear of rejection cant be THAT overwhelming.....can it?

It can. It is. Its awful. But its something that I have learned to come to terms with and something that I am learning to overcome. I am 30 years old....its about time that I care not what others think of me....right?

This theory has been put to the test once more. I have joined a facebook group called CF Mommas....its private, by invite only. Its mostly female, some dadda's wandering around though....I must admit, I was petrified.

A comment here, a comment there...kinda like easing your body into a cold swimming pool, one toe at a time.... a like here, a like there....no harm, no heads bitten off.....and finally a question posted.....

Over time I have eased into this group and found it to be quite informative. A place to laugh, to cry, to be amongst those who understand....whole heartedly understand, have been there, done that, been through that. I'm flattered to be a part of such a lovely group of women.

So "Thank You" ladies for the invite. I look forward to having your advice to look to...

much love ~j