Where ya been, Juli?

Computer glitches mixed with life, throw in a few over time shifts and you have a blogger MIA.

I apologize for the absence, however I find it to be a good thing. This blog was started as a place for me to vent, a place for me to run....Therefore no news is good news....

Christmas was as fun as Christmas can be.....running from house to house, eating too much, and children who just want to go home and play with their toys....Every year I say that I wont do it again. Every year I say that I'm going to stay home and enjoy Christmas instead of running from house to house.....maybe I will actually do that next year....maybe.

Tonight I'm going to leave you with pictures of the last month....it hits the high points on what we've been up to :)

Chillin in my LSU socks :)



Play time with our Nebs


Harry Potter with Caitlin





Christmas Time!



Christmas Eve morning mess!


Cookie making time!




unpacking and organizing


Pizza night out!

The CF split: Do I have two personalities?

As I was driving across Lake Ponchatrain this morning, I had a thought....How did I get here? Not here as in on the Causeway, but here as in making that drive for four years without losing it....mind you, Ive come close a time or two but that's just not the point....

I blame it on the CF split....my term for the persona you have to take on to deal with this disease day in and day out....be the advocate, be the nurse, be the protector, be strong, handle this and deal with that and make sure...always make sure....just do do do all day long in and out and up and down and meals and calories and counting and calculating with the enzymes and the medicines, did this one, didn't do that one yet, got 30 more on this and then 20 on that, well i can do the laundry while this and squeeze in the floors after that and then maybe we can leave the house in.....well.....maybe we'll just stay in today.

Its hard to have your life sneak up on you like that. I liken it to an out of body experience, moments that sneak up on you and turn into a time spent looking from another point of view, from the perspective of who I used to be.....not quite so serious, the world wasn't quite so scary, invulnerable, unstoppable....perhaps its the CF split, perhaps its age...as I write, I'm starting to wonder which has brought more change....maybe both, maybe its just life....

I see the differences most clearly on CF clinic days or days when Natalie is sick. Laughing and joking and just general feelings of well being are robbed, reality is thrown into your face over and over, the sinking feeling with every nurse or RT that walks into the room, with every blood draw, with every xray...her mortality is thrust boldly into my face and it hits the wall that I have built so that I can cope....

Its hard to break yourself out of that role. Its hard to see, to feel anything but the fight when you're in it. Its superhuman and almost robotic, there is no try, only do. Most cant understand that. All they see is that I get to work only two days a week and I stay at home with Natalie five days a week.....


Then there are nights like last night. Pizza night out. Ice cream. A trip to Wal-Mart and making Christmas Lists for Santa. Singing in the car on the way home. Bubble baths. Laughter. Fights over toys. Moments of blissful escape....


But here I am, fighting the fight, and trying find a reasonable balance between who I am and what this life has turned me in to...not that its bad, its just different.

I'm not complaining. I am blessed, I know this, and I am grateful. But there are just moments when you look around and say to yourself, "What the hell?".

Christmas, cold, and heat.

Its sneaking up on me. There is so much to do. I was never the type to actually write out a "to do" list. I always just kind of made it up in my mind and removed them mentally as I accomplished each task.

No more.

I actually sat down this morning and wrote out a list of things that I need to accomplish in the next two weeks (give or take a day or two).

As we all know, Christmas falls on a Saturday so that means that I will be spending Christmas day and the day after dragging myself out of bed for 16 hour work shifts....ugh! ugh! ugh! oh and did I mention UGH!!!! So that cuts me even shorter on time to get anything done.....*sigh* Oh I'm sure it will work out, but at what expense? My sanity? perhaps. It could be worse....it could ALWAYS be worse.

Grandma and Grandpa came to visit this week. Caitlin got to go shopping and they brought some really nice furniture for the girls..... THANKS GRANDMA AND GRANDPA!!! They are truly wonderful people and the girls just adore them.

Amongst other random activities of the week, the heater broke in the new house....ugh! I went to work Thursday night and when I got home Friday morning and went to turn it on.....nothing happened....nothing. I'm not the type to waste electricity so I had turned it off when i left the night before....so it was cold....brrrrr! Thankfully it wasn't too cold Friday (mid to upper 60's), and thankfully (knowing my luck) I had the foresight to purchase a home warranty. So it was covered, however, they weren't able to come out until today...Soooo, I got creative. I turned on the oven and opened the door, closed all of the bedroom doors, turned on the bathroom heater opened the bathroom door. It worked perfectly. Caitlin was gone for the weekend and Natalie left Friday afternoon so I cuddled up with a pillow and slept on the sofa.

Were there better ways?

Probably.

Could I have slept somewhere else?

Definitely. I had more than one offer.

But I wasn't going anywhere....this is my house. Through the good times and bad, broken and repaired, until uninhabitable do we part :) I love my house.

Over the weekend the other J brought a space heater from my parents house and came and warmed up the house before I got home so that I could sleep comfortably (he's so good), so it worked out fine. And as of 10:30 this morning the heater is fixed and we are good to go....yay!

Natalie is well. We have completed her Cipro which she lovingly (sarcasm) nicknamed "yucky white". At least we're down one medication on that ever growing medication list, right?

So we're off to run errands and check off items on my no longer imagined "to do" list. What's today? Monday? The 13th....ugh! Ten days, ten days, ten days! Oh my!

All of my best to you during this holiday rush! ~j

We're baaaaaack! ;)

As you can probably guess, I've been on a hiatus of sorts in order to get into the new house and get everything under as much control as humanly possible.

Yes, I realize that control is an illusion....one that I enjoy.

We are moved in and trying to get settled....lots to do, but so little time.

Natalie is doing really well. Her cough is nearly non-existent. Her medicines are working as they should. She is cooperating most of the time. She still cant get into the habit of doing so many treatments. She just wants to play, so we spend a large majority of the treatment time moving toys closer, switching rooms, and trying to make the time pass as quickly as we can.

Here is her current medication list:

ORAL:

Cipro 5 cc BID
Periactin 7.5 cc BID
Zyrtec 5 cc q day
AquaDEK 1 capsule q day
Creon 12 25 capsules q day 4-5 with meals 3-4 with snacks and supplements

INHALED:

Tobi 1 ampule BID
Albuterol 1 ampule BID
HyperSal 7% 1 ampule BID
Pulmozyme 1 ampule q day
Patanase 1 spray each nare BID

It doesn't look like that much when you type it out...but it is time consuming.

Three of her medicines are liquid, that's 4 syringes to be pulled up along with 5 capsules to be swallowed at breakfast....
The Cipro makes her gag. I called the office and got a pill form called in, but it is not coated and instantly starts to dissolve in her mouth, therefore it is no better than the liquid. So there is coaxing and coaching and cheering until they are all gone....

Then we start her inhaled medicines.

The HyperSal and Albuterol take at least 20 minutes. Next comes the Pulmozyme, that's 15 minutes, then 30 minutes of her Vest treatments, then her Tobi. Tobi takes another 20 minutes.

Again, it doesn't seem that bad looking at it. However, have you ever tried to keep a 4 year old on task for that long? She just wants to play....real play....uninhibited, unencumbered, full out play....no masks, no vests, no craziness....its hard.

I would love to give in to her sometimes and just skip one, cut it in half....but I cant. My habits now are her habits later. If I show her now that her treatments don't have to stop her way of life, that they can be worked into her life, then maybe, just maybe she will learn that lesson early.

My hope for Natalie is that she lives with this disease/condition/disorder, however you like to define it, even for her to live in spite of it would be good for me. I don't want her to have Cystic Fibrosis and be a little girl. I want her to be a little girl who happens to have Cystic Fibrosis....if that makes any sense. I don't want her to define herself starting with CF.....I want that to be the last thing anyone ever says about her.....She will be smart, fun loving, pleasant, kind, funny, strong.....and she has CF. Don't get me wrong. I am not downplaying the seriousness of this disease, nor the struggles that come with it....I live it. I sleep with it. I wake with it. I just want her to lay the burden of worry on me, and be a little girl.

What a difference a week makes......

Thanksgiving was nice.

No running around. Good food. Saints football on tv and a win to boot.

I dont know whether to be grateful or angry....Natalie is 100% better already. Running around, dancing, laughing....not that she wasnt before, but there is just a little more pep in her step....dancing along with tv shows while doing her treatments....little differences. Her cough is nearly gone....

Its only been 6 days of treatments and the difference is unreal. Miracle medicines or just a bad doctor making a call too late after things had gotten so far out of hand that any additions would help? Im not sure. We added so many medicines with her last visit that I cant be sure which once is helping....Is it the addition of Albuterol & HTS 7%(Hypertonic Saline), or is it the Tobi, Cipro perhaps??? Pick one, any one.

I am grateful that she is better, but there is just this nagging feeling in the back of my mind....so long we've needlessly struggled....so long.

I suppose the truth is that we just have to move forward with a hard lesson learned.

I am trying not to get too excited,but my mortgage broker called this afternoon. He has scheduled the closing for 4:30 pm tomorrow. He says definitely tomorrow.....*sigh* I wish that I could count on that....Im not that type of person though. I am the "plan for the worst, hope for the best" type. Some call me pessimistic, I say Im just a realist.

Christmas shopping has commenced. Natalie is asking to put up decorations already and running to to Holiday ailse at every store shouting "Mommy we neeeeeed this!" Its cute to see her get excited.

Caitlin is with her father. I am kinda glad that she isnt going to be here this week. The back and forth with the mortgage company and the real estate agent was getting to her....She is old enough to understand that things arent going as planned....I told her that it was supposed to be Tuesday or Friday and her response was "Thats what they said last week" She is frustrated, understandably so. We all are. Five months of this is enough to make anyone crazy. My girls are used to having their own space and free reign....I cant wait for them to have that again.

So here we go again. Another week. Another list of "to do's" and challenges, another week of sighs of relief and being okay.

We are good. We are fine. We are okay, and its gonna be alright.

all of my best ~j

Homeless with PA....please help!

I am grateful, I am thankful, I am calm, I am collected......

I will not fall apart, I will not fall apart, I will not fall apart.....

Okay, so that whole mantra isn't working too well. Its been a really crappy day.

We started out at 6:30 am trying to get Natalie to NOLA for her clinic "appointment". There was no scheduled time, she was a write in because of the conversation that I had with her doctor on Friday.....they forgot to write her in....oops...yeah, and so it began....

Natalie's lead RT came and sat by me in the lobby and started talking about rounds of Cipro and Tobi....I was startled and confused....There's only one reason for a Cipro and Tobi combo....that big bad monster PA (Pseudomonas aeruginosa) Natalie hadn't cultured PA, if Natalie had cultured PA someone SURELY would have notified me.....right? I relayed to her that there must be some mistake. After all, Natalie's last culture was in September....two months ago....surely there must be some mistake......She thought maybe she was misinformed and went back to look at Natalie's last culture report, she told me that she wouldn't return if there was no PA and would see me when I was brought back into an exam room, but if she were positive, she would be back to talk to me....I began to sweat....I got nervous....I got fidgety. A few minutes passed and I began to relax, got lost watching Natalie and Caitlin play and watch TV. Suddenly, as if out of nowhere, I felt someone sit next to me....She was back. I looked at her and I could see it on her face....tears welled up in my eyes and I got angry, very angry.....

I made a scene. September, September people, F&%king SEPTEMBER!!!!! ARE YOU F$%king SERIOUS?!?!?!?! I didn't yell that. I wanted to. I didn't really yell at all. I did raise my voice and start to cry.....months we've gone on and off antibiotics, months I have complained to the doctors back and forth between this one and that one because this cough was not going away....months Ive complained of her decreased O2 sats and the seemingly inexplicable decline.....months......and they've sat on these lab results since SEPTEMBER!!!!

They hurried me to the back so as to limit my embarrassment, as well as their own.

Hell hath no fury like a woman scorned.....except that of a CF Momma scorned......

Being in the back didn't help too much, our CF coordinator came in and asked how I was and I lit into her too.....

Which apparently Natalie's doctor heard and at which time he hurried in, asked the coordinator quickly "in or out?" then got louder "IN OR OUT?" she slid sideways out of the door as he quickly shut it tight......

I looked at him, disappointed, and said only one word...."September?"

He gave me his assessment of the situation. Natalie had not grown enough PA to warrant it an "acute" infection and treatment, he felt that at her September and October visits that she was asymptomatic....He thought (and still does think) that Natalie's problems are allergy related....

I quickly informed him that she has been symptomatic....31 days of antibiotics, no relief....persistent productive cough with no febrile cause.....it all makes sense and he dropped the ball.....I informed him that I would be requesting copies of all further labs, cultures, and reports....I cant trust them to make the right decision right now....maybe not ever again.

He gave Natalie Tobi, Hypersal 7%, Albuterol, and Cipro to add to her ever growing medication list.....He is agreeing to treat the PA even though he doesn't find it to be a causative factor in her current condition? Sounds fishy to me....But he says that he believes that her decreased O2 is from a lack of efficiency of the Pulmozyme and not an active infection of PA.....Sounds fishy.....

We did a round of HTS in the office.....I left rather quickly and hurriedly....I got the answers I was looking for....I didn't want to look at those people anymore.

My lack of sleep and anger led to a quiet lunch. Natalie requested "chips" which is code word for Mexican food....I gladly gave in. I just kept looking at her....months...my baby has been putting up with this crap for months......for no reason.

I no sooner got home when the calls from work started.....I just wanted to lay down for a minute or two....after interruption after interruption, I finally started to doze off.

Another phone call....my realtor.

No closing tomorrow. The sellers screwed up the paperwork.....its going to be another week......

I am grateful. I am thankful. I am calm.....oh what the hell am I talking about? That was the f#%king icing on the cake. I wanted to cry, but I just couldn't. I reminded my realtor that as of tomorrow I am paying for electricity and insurance on that freaking house.....I better have myself or at least some of my belongings in it.....she's working on that......I will hear more in the morning....

I'm tired. Not just physically tired, but mentally tired too. I keep thinking that there has to come a day when things just fall into place and I don't have to fight so hard for every single thing. Why did I have to fight so hard for so long to get Natalie some sort of treatment. Why am I having to fight for every single step toward getting into this house....I just don't understand.

For some people, things just happen, they fall together nicely with bows and nice music playing in the background....at least I like to think so.

However, I am not one of those people.....I wish I were.

Especially tonight. ~j

So much has happened.....

Its been a week since Ive posted.....a very long week.

I took Natalie to her pediatrician this week. This cough that she has been keeping is driving me insane. I cringe every time I hear it....I just want it to go away.

My frustration with the whole thing was evident that day. I was angry. I explained to the pediatrician that I had 80 yr old COPD patients whose sats were better than Natalie's.....I was scared..... I half-heartedly said, "If this is chronic and its not going to go away, then someone needs to tell me" The pediatrician looked at me once her exam was finished and said, "Juli, I think we just might be there." My blank stare turned to tears as soon as she left the room. I wasn't ready to hear that. I didn't want to hear that. Why are they giving up? Why are they throwing their hands in the air? No chest xray, no blood work, no antibiotics, nothing.....No, I'm sorry, not nothing.....they changed her nasal spray because Natalie's pulmonologist is convinced that this is allergy related.....not CF related.

As a nurse, I can see their point of view. No fever, no behavior changes, her lungs are clear to auscultation.....they have nothing to go off of......

But they aren't trying hard enough.....they just aren't.

I have an appointment with a different doctor for week after next.

On a totally different note, we have a closing date and time for our house.....As of Noon on Tuesday I will be in more debt than I can imagine and the happiest human being on the planet. I wont have much in the way of furniture...only piles of unpacked boxes and bags, but Thanksgiving will be spent in OUR house, mine and my girls' house.....Wow! I cant wait! I cant even imagine how life is going to change, how great its going to be, how hard its going to be, but I welcome the challenge.

My first order of business will be finding a refrigerator, its kind of necessary, but the second thing? Oh yes, a massive air filter.....its going to be safer to breathe in my house than outside.... and I'm going to have mini air filters in the bedrooms and the bathroom....

I am a woman on a mission.

This is the first time in the four years that Natalie has graced us with her presence that I will have the opportunity to make a home for her that is fully CF compatible. Its going to a a fabulous little bubble for her to exist in, to come home to....I think I am more excited about that than anything else.....almost.

So goes the ups and downs of my life.....one second you're at the top scared of the fall, the next you're at the bottom wondering whats at the top of the next hill....the roller coaster that keeps me crazy and keeps me sane. However crazy it may seem, I am grateful for this messed up, insane ride called life.

all of my best to you always ~j

Keeping up....

I rarely let Natalie in the Playplace at McDonald's. Its nasty. All i keep imagining in my mind are the infinite number and species of viruses and bacteria lining the inner walls of the plastic tubes......

That being said, sometimes she just needs to be a kid.

We went for breakfast at the beginning of the week. An old friend from high school was in with her little girl. The two little ones became quick friends and set out into the maze of colors and plastic while us moms sat on the sidelines, watched, and talked.

I watched Natalie carefully and for the first time noticed that she couldn't quite keep up all the time. She stopped, occasionally winded from the constant running and climbing....It was the first time that I thought maybe she wouldn't be able to keep up with other children her age.....The thought had honestly never crossed my mind....

She never quit though. Not once. She rested when she needed to, but got right back out there and played her little heart out.

Eventually there came a time when I had to put an end to it. We went for breakfast and stayed until they were nearly serving lunch. We all had a good time and in the end, I don't think anyone noticed except me.....

Heartbroken? Not really. Proud? Definitely.

The only person Natalie needs to keep up with is herself. She is learning to listen to her body, but not giving up when she needs to take a minute to regroup.

I couldn't ask for anything more.

Thankful seems so inadequate.....

Tomorrow is Natalie's 4th birthday.

Four years of learning how to be a mom all over again. Four years of sleepless nights and random bouts of tears and anger.

Its taken four years to find a peace with her diagnosis. Im not sure I am completely there, even now.

Regardless of the process, I am ever so thankful. Thankful for the moments when she makes me laugh or makes me cry. I am thankful for every visit to the doctor, every car ride across the "big water" that takes us to the group of people who keep our CF world going....Natalie's CF team. They are an awesome group of people. I am thankful for her health. I am thankful for her progress. I am thankful for how stable she is right now.

Four years.

I didnt know how my world would change 4 years ago. I didnt understand.

She has made me a more relaxed person. She has taught me to take things as they come. She has made me a stronger person. She brings a different dimension to my world. She was a surprise, she was not planned, but life would never be complete without her.

So tonight I wish Happy Birthday to my littlest angel. Mommy loves you!

A letter to Honda Finance:

To whom it may concern:

Your recent negative reporting to the credit bureau has been devastating.....you suck.

I have NEVER been late 30 days nor 40 days, let alone the 41 days that you are reporting.....you suck.

I understand that you cannot send a hand typed letter correcting your mistake and that it will take 4-6 weeks to draft one because it has to go through your legal department.....you suck.

I understand that you have notified Equifax to remove the negative statement, but it takes over a month to go through equifax's red tape......you both suck.

You have quite possibly destroyed the contract on the ONE house on the market that I liked, let alone cost me the amount on my contract guarantee and the cost of the inspection.....you suck.

Furthermore, you have possibly destroyed my children's hopes of being in a house for the holidays, let alone myself.....you suck.

When this is all said and done, if i ever do get the chance to get into my house and get my credit score fixed and put this all behind me like a REALLY bad dream, I intend on refinancing my car. Why? Because YOU SUCK!!!!

Sincerely,

Juli Canning

Great Strides PLUS 100th post and counting.....

We had a great time today with the CFF and got some great ideas for next year's fundraising. Team Natalie raised $400 for the CFF, which is an excellent start. We have plans to make next year huge!

I loved our color choice of hot pink shirts with purple writing. We stood out like sore thumbs and I loved it. Definitely going to stick with the color theme for every walk. I even bought a hot pink hat to match....too much? I think not ;)

I was so proud of Caitlin for getting out there with us, keeping pace step for step (occasionally warning us of our slowing pace), and being super enthusiastic about it. She was, and always is, an amazing little girl.

We started out in the morning at 45 degrees. I just knew we were going to freeze, but it quickly warmed up and made for a perfect morning to walk.

A very special and HUGE "Thank You!" to those who came out and supported us in every way.

AND......

This is my 100th post.

Its been a good day. However, instead of a lengthy wordy post, tonight I am going to leave you with pictures. More to follow soon. All of my best to you all, always. much love ~j

Great Strides means she has CF?

Saturday is our walk.

I don't know what to expect.

It has taken me nearly 4 years to involve myself this much.

Call it denial. Call it lazy. Call it whatever you want.....

Its hard to accept this disease. Its hard to acknowledge it, even when its staring you in the face.

Its hard to put it out into the world, but this is my coping mechanism. If I "talk" about it, then I can handle it. Doing this alone was too much to bear.

This blog still isn't "public" to me though....there is something about the idea of meeting people face to face who are fighting the same fight or have lost someone in this fight unnerves me....gives me reason for hesitation, the urge to run far and run fast in the opposite direction....I just don't want to acknowledge it THAT much.....

I'm a coward. I like my bubble. I'm bursting my own bubble. That makes me nervous.

So when I participate in this walk on Saturday, it will be my final layer of acceptance, my last shred of protection formed from my own denial and pride will be gone.

I don't know what to think about that.

Please don't look at us that way.

You see my disheveled appearance and cock an eyebrow, but do you know Ive been up all night listening to her cough and repositioning her so she can breathe easier.

You see her runny nose and for a moment hear the cough that makes me cringe 24-7. You give her the "that's disgusting" look, turn up your nose and keep walking.

You look at her like she's rude when she doesn't cover her mouth, but what you don't know is that her mommy told her not to because if she covers her mouth, she doesn't cough as well. So I cover her mouth for her so she can cough with all of her might.

You see the purple streaks in my hair and assume that I'm "one of those", you assume that I'm trying to be different, when in fact all I want you to do is comment or ask so I can tell you about our fight, our fundraising, and why we need your help.

You don't know us, but you could.

You don't know our fight and I pray you never do.

You don't know what you're turning your nose up to, cocking an eyebrow at, and turning away from when you turn away from us.....but you could.

A kind word, a well phrased question, or even a smile could open a door.....then you would know, then you would understand, then you wouldn't look at her that way.

Please stop looking at us that way.

iPhone conspiracy.

I suggest to you today that one fact is obvious and true.

Apple is on a mission to control the world.

This is much like Microsoft, but in a much more cruel and calculating manor. Microsoft has the upperhand (barely and for now) in the PC market, therefore it affects mostly your home and work life, the moments when you are still, staying in one place....

Apple, they seek to control you when you're at your most vulnerable....when you're on the go....enter the iPhone.

They have convinced the masses that there is no better phone on the planet than the iPhone, and we have fallen for it, hook, line, and sinker. Therefore, it makes the iPhone a highly prized possession and a highly craved possession.....

Someone stole my iPhone. They stole it while it was sitting no more than 10 feet from me and while my back was turned.

Just like that my appointments, my phone numbers, my instant bill pay, my world was gone.....not to mention my purple and black Fleur de lis case that I love so much....I'm devastated. I'm hurt. I'm angry. I'm still in shock. I cant believe I work with people who would do that to me.

My fellow iPhone users know that once you go to an iPhone, its nearly impossible to go back to anything else without having to go to rehab. It is user-friendly and it does everything. I can pay my bills, blog, check my facebook, and stalk my friends (j/k) from one nifty little device. Its awesome.

Well, I did everything I could to try and get it back for as long as I could stand to go without...called the cops, tried to track it through AT&T Family Map, offered a monetary award at work....but those who know me know how very, very impatient I am when it comes to such.....

Soooo this morning, first thing, I headed to AT&T to get another one.

As I was waiting and pondering the choice between the iPhone 4 or the 3Gs and saving 100 bucks to put toward something more important, like groceries or something to put in my new house.....I realized just how stuck I truly am. Technically there were four or five phones that I could have walked out of the store with at little or no cost.....but there I was, instead pondering the choice between spending $100 or $200......

Its sick.

I'm stuck.

Hail Apple, ruler of my cell phone universe ;)

much love ~j

what's really going on?

Inspection of the new house went off without a hitch. The house is so new that there is not much that they could find wrong.....little stuff like the hardwood was mopped with water by the previous owners and a light fixture in the bathroom.....

I have a meeting with my mortgage broker today. Instead of getting dressed, I'm sitting here "talking" to you.

I miss my world before June 30th. Im not even going to lie about it. Yes, it was mediocre at best. No, there was not much "living" to the life, but at least it was stable, predictable. I miss my miserable predictable life.

Everyday holds something new to deal with. For those of you who know anything about astrology, I am a cancer. My favorite thing to do is to retreat into my shell and hide when things get tough.....I have nowhere to hide and I MUST deal with everything that is going on right now. Its uncomfortable, to say the least.

Natalie's cough is relentless. Im starting to think that I should get a new doctor, a second opinion, a new CF center? Im not all about doctor hopping, but I just dont know if they are being aggressive enough. Or maybe its just me, I dont know.

Vertex announced the begining of their combination trial of VX770 and VX809. I am super excited about this. We are so close to drugs that could make a real difference. For those of you who are not schooled on these drugs, it would be the equivalent of insulin to diabetics. You can click on the Vertex link on the side of my page-------> over there--------> to see their progress or you can visit cff.org to see the press release. Vertex is anticipating filing a new drug application in the 2nd half of 2011 for VX770....

Dear God, please carry us through until you see fit for a cure to be found, amen.

Having a moment or two....

For some reason she always says it better than I ever could. I guess that's why she is who she is, huh? all of my best! ~j

To all of the CF mamas:

I borrowed this from the Breathe 4 Tomorrow Foundation's website. It is an organization helping families dealing with Cystic Fibrosis defray common costs that can become overwhelming. No one should have to decide between electricity and medicine. Check them out. Donate. www.breathe4tomorrow.org


I don’t know where to start this
So I guess I’ll use the start
The part where you had a sick baby
I know it broke your heart…

All the medications
You had to make me take
The clapping and the enzymes
The strength you sometimes faked…

Through my teenage years
I know I was a pain
Thank you for putting up with me
Though driving you insane…

Every time you’d hear me cough
I know it would stop your heart
When I’d get an infection
It must have torn you apart…

Now that I’m a mother too
I am always looking back
I can’t imagine what you’d go through
Listening to me hack…

Thank you for teaching me
That CF was not an excuse
And making me take my pills
When I tried to refuse…

You are my CF momma
No words can explain
The strength you possess inside
That gets you through the pain…

That strength you had to get up
In the middle of the night
To bring me a glass of water
And be there by my side…

To teach me to love others
As much as I love myself
And sometimes you taught me
To put my pride up on the shelf…

I know sometimes you blame yourself
For that gosh darned faulty gene
I want to know that I wouldn’t
Change it for anything…

That gene made me who I am who I am today
A strong amazing girl
I wouldn’t change one thing
About my CF world…

I have met terrific people
I help doing an amazing thing
All because of that one
Gosh darned faulty gene!!!

A New House, A New Start......

How did house shopping go? Well, it went.

We started out the process looking at a couple of condos and houses that I had picked out. They were in the exact area that I wanted, but that's about all that they had going for them....

Katrina has left a misconception in the local housing market....let me elaborate.

We live on the North shore. If you aren't from LA its hard to understand, so let me give you a visual. New Orleans is on the South shore of Lake Ponchatrain. Its a large mass of cities and parishes (counties) shoved into a small area between the lake and the Gulf of Mexico.... A small area where all the rivers, tributaries, and swamps amass to finally fall and (those that need to) empty into the gulf, hence the flooding problems and the whole below sea level thing. Therefore the north shore is "higher ground".

After Katrina there was a rush to the North shore. They estimate that 10 years of growth in population was accomplished within months. It was a shock to our system :) Housing prices went through the roof.

Then recently the housing market collapsed, prices fell, however people still think they can sell their house for what they bought it for after Katrina. They kinda need to in order to break even.....yeah, that's just not happening.

Soooooooo........

Those of us who are trying to buy houses right now are left to sort out the "post Katrina" sellers from the regular sellers....its frustrating because there were houses that I liked, that I wanted, but just weren't worth the asking price.....the price per sq ft was outrageous and the sellers just weren't going to come off of the price, they couldn't and I wasn't stupid.

There is a happy ending to this mess, if I can make my way there.....

After looking and walking in doors only to turn and walk right back out, I finally pulled up in a driveway and felt comfortable. I walked into a door and wasn't immediately turned off. I could walk without hesitation through this one. I could breathe, it just felt right.....it was perfect.

I didn't want to make this decision alone. So after looking at one last house, I brought the girls to the one I picked out....they had the same reaction that I did. They immediately started running room to room staking their claim, running out of the door to check out the yard, their faces lit up. It really was the one.

My agent made a phone call.

There was already an offer in on the house.

She talked me through it and we made a plan. The other offer had just come in a couple of hours before so we sent in an offer and a contract, just in case the first one didn't work out. They had until 5pm Tuesday to respond.

At 4:36 pm on Tuesday I got a text from my agent....they had to work the first offer that they got in....they had countered.....the other buyers had until noon on Wednesday to accept or decline the counter offer.....

I was petrified. I started to cry. I just knew that this house was going to someone else and I was going to have to start over. I was crushed.

Luckily, I wasn't crushed for too long. About 12 minutes later I got a call from my agent. The other buyers declined the counter offer and my contract was accepted.

WE HAVE A HOUSE!

I was excited. I was relieved. I was overwhelmed.

I wasn't the only one though. Caitlin's eyes started to tear up. She was excited too. My little one was laughing and clapping in the back seat.....it was a good moment. Something I will remember for life.

Now there is more waiting. Paperwork. Inspections. Appraisal.

Closing is set for November 19th.

Christmas may be slim this year. The girls will understand. Maybe not today, but one day. I will forgive myself, eventually, for not spending a fortune. And in the long run, what a glorious holiday season this will be.

I'm ready.

Houses, School Districts, and Locations, OH MY!!!

"Hello world and welcome to Brain Overload!"

"Today we have a lovely contestant trying to pick out a house that is within her budget, within certain school districts, and is bigger than a closet! Lets all laugh while her head explodes!" *resounding applause*

Yeah, Im a little off. But I do have to keep myself amused somehow, right? :)

I'm super excited and super nervous to be embarking on this whole journey of first time home buying, but it is seriously making me a nervous wreck.

What if I pick the wrong house?

What if I dont like the neighbors?

What if the neighborhood becomes trashy in 5 years?

What if I buy the house and everything falls apart a month later?

Oh the stress! But its a good kind of stress. I am so grateful that I am able to do this and so grateful for the people who pointed me in the right direction. Yeah, Im rambling. When I said brain overload, I really wasnt kidding...its never ending.

The girls are super excited too. Caitlin is just worried about staying at the same school. Natalie just wants her own room again.

So tomorrow is the day. Eight houses. Five neighborhoods. Let the fun begin.

much love! ~j

random update.....

Do you ever feel like you've said something so many times, that at some point it has to come true? I've been saying "It'll be alright." for a long time....at some point it has to be true. Its that whole self fulfilling prophecy thing, right? Think it to be so, and it will be.....right? I hope so.

Tomorrow is a big day. I have an appointment with my mortgage broker to start/finish my prequalification paperwork....I'm going house shopping. That's right....house shopping. Me, myself, and I. I am going to buy a house, and it will be mine, an no one can ask me and my kids to leave, no one can take it away from me. A sanctuary, a place to make my own.....oh I can hardly stand it, I'm just that excited about it. I try not to be. I try to be realistic and go over all of the "what ifs" in my mind....but I just cant help but get excited about the whole idea of it. Oh, how amazing it will be.

Natalie is doing okay. She's not fighting the antibiotics so hard, but she is so sick of the nebulizer and vest....she just doesn't understand why no one else has to do it. We haven't put a name to CF yet. We haven't had to. I feel like the time is coming though. We were out meeting a real estate agent this week and Natalie coughed. The agent innocently asked Natalie if she was sick, Natalie replied "No, I not sick, I have a nebulizer and vest for my cough." I was proud that she wasn't ashamed, we've given her no reason to be. I was proud that she realizes that she is not sick and that there is a difference. But I was ashamed that Ive given her no other explanation....and then I wonder if she needs it, i wonder if its just too soon....I don't know the answer to this one. I'm just going to have to think about it for a while.

Caitlin is doing fine. She's getting into the groove of school and her grades are wonderful. If I can just get this mortgage and house thing settled, I think she will be a lot happier. This transition time has been tough on her. She is a private child, likes her personal time and her personal space....there hasn't been a lot of that lately. Hopefully that will be over by the end of the year and 2011 will be a year of starting over, together.

Cant wait to hit the restart button and get this show on the road....soon, really soon.... much love~j

embarrassed.....

I did it. I admit it. I deleted my last post.

Its too embarrassing to keep up. Not what I wrote about me. I dont mind talking about me....but I want to keep it that way. No need to bring my darker and more twisted past into play. We have enough drama around here, ya know?

Maybe I shouldnt have deleted it, maybe I broke some blogging rule. I dont know. My apologies, but there are just some things that shouldnt be shared.

much love ~j

My apologies to the McGriddle, sort of.

They say that your taste buds changes every 7 years. That's what they say anyway. A couple of years ago I tried a McGriddle for the first time.....I was disgusted. Its was soggy, it was greasy, it took only one bite for me to write them off for a lifetime, or so I thought.

Its been a rough week for a good friend of mine who is stuck in the hole. His hemoptysis has gotten the upper hand temporarily, so he is on a hiatus until his recovery from his bronch and embolization. *fingers crossed* that he is back soon to tell us what's up....You can visit UnknownCystic by clicking here. Make sure to leave some well wishes and maybe an off kilter comment or two. I think he likes the abuse ;)

UC is a big fan of the McGriddle, and he's been on my mind a lot lately. So early in the week when we made a stop for breakfast at Mickey D's, I sat in the drive through pondering my own food choice. I am not a big fan of breakfast food at all. I don't do pancakes, not a big fan of sausage. Breakfast just never was my thing. Plus, I have this thing about grease....I don't really like it too much.

But with UC on my mind, and his never ending praise of the McGriddle, I ordered one. I did this trusting my own instinct that I wouldn't like it and with a smirk on my face knowing that I would have more fuel to harass UC after his next post praising the breakfast treat. I say next because one is coming, maybe not today, maybe not tomorrow, but one day....he loves them that much :)

So as we drove away and food and enzymes were passed to Natalie, I stared into the bag. "So this is the what all the fuss is about huh?" , I thought to myself. It looked rather harmless. It didn't smell too hot though, I think it was the weird folded egg part. Eggs just don't do that naturally, ya know? :)

So I started to eat the little sandwich....I was confused. It wasn't soggy, it wasn't greasy, it was salty, sweet, crunchy soft, it was just really really good. Really good. I was excited and disheartened simultaneously. My plan was ruined.

So as badly as I wanted to be able to harass UC, I cannot. I would have a bacon, egg, and cheese McGriddle any day of the week. It probably wouldn't even have to be breakfast time, they're that much fun to eat.

After my 3rd trip to McDonald's for my new breakfast treat (in the past 7 days), I returned home this morning and looked up the nutrition facts....OUCH!!!!

Alas, I am pancreatic sufficient and to practice long term McGriddle eating would be devastating to my girlish figure, not to mention the whole increased risk for CAD and HTN. Just sayin' :)

However, for all of you CF moms and CF peeps, if you're looking for a kick start to your day at over 420 kcal, 18 gm of fat, 1110 mg of sodium.....this is definitely a good way to go. The cool part is that even after all of that, its so tiny, that it barely fills you up, so why not go for two? :)

So my plan has changed. Since I cant harass UC about anything, and I cant eat McGriddles without dire consequences and casualties in my wardrobe, I have decided that I am going to try to get Natalie to like them. She's a picky eater, but I'm confident that she can be won over.

So, my apologies to the McGriddle, I may just need you around afterall. Sort of.

much love ~j

&*%$Random~!*^

Just a random post.

I am a nurse.

I love chocolate.

I hate medicine. I believe in the power of the human body to correct itself. This statement is void if you have an actual functioning problem (as in something just doesn't work right, is broken, damaged or deformed) This, of course, only works if you commit yourself to a healthy lifestyle....I don't even do this, but I believe it works. Ive seen it.

I think that "Deep Thoughts by Jack Handy" on SNL was one of the best recurring skits of all time, aside from Stuart Smalley.

These arent the originals, they're hard to find, go figure.




I love chocolate. I think its the best escape under the sun. Beaches make me self conscious and sand makes me itch. Just give me a chocolate bar and a front porch with a rocking chair and I'm good, really good.

People often mistake me for stuck up. Im actually quite self-conscious and prefer small intimate groups to large social settings.

I love pictures. However, I am terrible at getting them printed. If my hard drive ever crashes, my childrens entire childhoods will be lost.

My secret dream job is to be a photographer.

I think that the ultimate "ha! in your face!" moment for parents is when their children ask to come back home.

Chocolate, did i mention that I like chocolate?

I don't go to church, but i listen to the sermons on cd. Sometimes I wonder if thats the same as not reading a book and waiting for the movie to come out.


Anyways, just sayin' much love ~j

Hiding out and ignorant ERs.......

I'm not going to even try to lie. Ive been hiding, making excuses, avoiding any real thought or logical reasoning for quite a while. My posts, however few and far between, have remained superficial for a reason. There are people reading this that I just don't want to open up to. Isn't it ironic that those who are closest to us, are the ones that we keep the most from.

I would share nearly anything with some of my readers whom I have never met, yet hesitate....leave out certain things with my family and my friends....backwards much? I think not.

Everyone has ideas of who they think you are. When things go wrong, go right, when things just don't add up.....Do you really want to seek advice from the people who already think you're a bitch, think you're retarded, think that you are, by far, the family f&%k up? I think not. I just don't want to hear..."well Juli, you know, we told you so." Or "well, that's just the way things go." Or worse yet, not hear anything and let another family member come back to you and say "hey, you might want to lay low, they re talking about you again."

I've made a huge mistake. HUGE, giant, gargantuan, massive mistake. How to fix it? I don't know. Some of the most traumatically horrible things that have happened in my life have been a result of me trying to "fix" my mistakes.....I don't think I'm going to fix this one, just going to let it happen. No sugarcoating, just let it go ahead and blow up and see where the pieces fall.

All of this lies beneath what is really going on. Natalie. Natalie is always going on. She is a never ending pile of worry and fear.

We had our 3 month checkup yesterday. O2 sats are still down, cough, no fever, just general yuck.....so what do we get? 21 days of antibiotics....yeah, you heard me 21 days. That's nearly a month! aaaaannnnnd its Omnicef. She hates this stuff with a passion. She gags, she runs, anything she can do to get away from the white medicine, she does....its going to be a long 21 days.

Treatment frequencies are increased, mls have been increased, its too much, too fast. I'm trying to absorb it all and figure out what it means, while trying to carry it out simultaneously. What does it mean? Nothing. Everything. It means she is sick. CF sick. Not I have a cold, I have bronchitis, I have strep, I have a sinus infection, nor an ear infection...there is a difference, she is CF sick and that scares me.

To top it off, she decided to jump off of the sofa last night. She landed directly on her right side, her rib cage began to bruise immediately. I just knew she had broken something. So, after a day in New Orleans with the CF team. We spent the night at the hospital with the other late night ER peeps. In general, it could have been worse. She entertained us, and the waiting room. It wasn't a total loss. She's going to be a star one day. She loves the attention, so animated, so full of life...even when she is sick, even when it hurts to cough, even with bruised ribs, she is larger than life. My tiny ball of light and energy, waiting to give me a heart attack.

On the flip side, she may as well have been a rat in a cage to the ER doc. We went to a new hospital that we don't usually go to because it was closer, apparently they don't see much CF. The nurses, only concerned about her cough, the MD's...they too, only concerned about her cough....even the xray tech, concerned about her cough. After correcting each of them that we were not there for her cough, she was already being treated for that, that we were actually there because she fell, the same confused "seriously?" look on their face....."...But she has CF, and a cough..." the ER doc replies ignorantly...."Yes, she does, and a 21 day course of antibiotics ahead of her....I just need to know if I can do her vest treatments without puncturing a lung, that's all..." She stutters to find words, I had to explain to her what a "vest treatment" was after she asked what kind of nebulizer treatment that was...yeah, it was awesome. So after 5 hours hanging out in the ER, we got the go ahead to go home, her xrays were clear as far as broken bones, but her chest xray wasn't too hot. Guess they wanted to throw that in there for the fun of it, perhaps for their amusement, hopefully for their education. And yes, there is a difference between taking an xray of the right side of her rib cage and a chest xray....

Soooo here I sit. Ive picked up a 2nd job. I don't have much free time. I do apologize for the abrupt exit. I'm trying to get my brain back. It seems to have gone on vacation. wish I could have gone too. much love ~j

That's one HUGE leap forward....and maybe a stumbling block or two....

Life goes on, evens out, progresses, changes....always. Things keep going, and going, and going. "..Life's like an hourglass glued to the table..."

We've reached a major milestone in CF life....Natalie is swallowing her enzymes whole. Yay! She learned this one totally by accident. She was out with my sister and just happened to not have any applesauce, so her Aunt Kayla coaxed her into it and there's no stopping now. She's so proud of herself every time she takes them and Mommy is proud too. She's just growing up so fast, so fast.

On the flip side, she woke up yesterday morning with her eye swollen shut. I took her to the eye doctor (her regular pediatrician preferred it that way) The swelling seems to be an allergic reaction to an insect bite, but they did an eye exam anyway....and she failed it....miserably.

I had grown accustomed to clumsy children. I was clumsy, I walked into doors in grade school. Ive gotten more than one call from the school for Caitlin walking into a pole or a door. (Its okay to laugh, its definitely funny)So when Natalie started walking into doors and hitting the corner of the wall when trying to walk around it, I never thought twice. But as she was sitting in my lap, my heart kinda sank a little when she looked at the nurse and said "ummm that's a little too far away..." and I could see it perfectly. I was hoping that it was a fluke, so was the nurse, so she backed up the slides and showed it to her again. The pictures popped up on the screen and once again, "ummm that's a little too far away" *sigh* So next week we will be repeating the eye exam. The doctor prefers that both eyes are healthy before we jump to any conclusions. I agree, but I cant help but worry.

On another note, we may be getting a house of our own soon. My sister has done more than her share in letting us hang out for a while, but I am hoping to be moving on very shortly. Just waiting on a phone call at this point, so we shall see....

Love to you all. ~j

Not for the chromosomally challenged....this means you guys! :)

I'm having a moment. A girl moment. These are few and far between seeing as how most of my time is spent being Mommy and I haven't quite figured out how to be a Mommy and a girl simultaneously. The concept eludes me. If you are female you know exactly what I mean.... However if you're a guy, you're not going to relate and probably want to find something else to do right....about.....now.

I've let myself go lately. No manicures, no pedicures, no eyebrow shaping.....heck I haven't had a haircut since....since....wow I guess since I decided that bangs were a good idea and they are totally grown out now. Its been a while.

But today, today I had enough. Today I looked in the mirror and saw....yuck! So my sister and I took on the task of handling up on those unruly eyebrows. Yep, that's right, it took two of us. It was painful, its was a process, and I don't believe I'm going to be waiting that long before I do it again. In my defense though, Kayla did tame them a little more than I usually do....she was pulling hair that had 30 year old roots, deep....strong....painful to break roots. Pulling out eyebrows that I'm quite sure Ive had a VERRRY long time. I'm cringing as I write this...it was not fun. So no more skimping on the personal grooming. It just hurts too much. :)

Ive never been the girly type. I have one makeup bag. One. It gets thrown in the car, brought to work, thrown back in the bathroom, and back again. I have no collection of perfumes...its bad for Natalie (or so they say). I have no collection of fabulous lotions....they're perfumed as well and what's the fun in lotion if its unscented.

I'm not sure if the lack of estrogen driven habits is a lack of interest or a lack of time. Ive been a Mom my entire life....since I was 19. There's just not time for such indulgences....at least not on a regular basis. Sometimes I wish that I were more girly. More feminine. More....more something or less something perhaps. Maybe people would treat me differently. Maybe they would be more gentle. If I acted like I couldn't handle everything, maybe I wouldn't be expected to take so much, maybe they would think twice before things came out of their mouth, bite their tongues a little harder.... Maybe they would......maybe.

The unfortunate reality is that I'm not fragile. I am not delicate. I'm no UFC fighter, but I can hold my own. I don't cry at movies and TV shows. I don't watch Lifetime or Oxygen. I don't watch the soap operas to see if Jane is really going to leave John because he cheated on her with Betty. I think most "reality" TV is a joke. I watch football. I keep the TV on A&E and Discovery (when I get a turn, that is). I am the disciplinarian. When the girls want something that is questionable, they know to go to Daddy....not me. He's waaaay more likely to say yes than I am.

I'm coming to terms with this idea.....very slowly. I always wanted to be the petite girl, with blond hair and blue eyes.....I'm not. I'm 5'8, i tried to be blond once, maybe twice and it was hideous. My Italian and Native American backgrounds would never allow it to look right anyway. Ill never have blue eyes, even with colored contacts they still look nearly black....even at my lowest weight, I was never petite....I never will be.

People usually come to terms with themselves long before 30, or at least I like to think that they do. Maybe I'm wrong. Ive been trying to figure myself out while trying to form 2 other lives. Maybe that's why it took so long. Maybe if I had slowed down, maybe if I weren't in such a rush to get started with the rest of my life, maybe then I would be a different person....but I kinda like who I am....kinda....maybe.

Cheesecake.....

I bought a cheesecake a couple of days ago. It was a turtle cheesecake....caramel, chocolate, pecan.....no one else eats cheesecake, except me. Therefore, I had to eat it myself. I am sorely disappointed in myself....maybe not. It was good.

That's about as deep as I go lately. Cheesecake. Ive tried for days to write an update.... to tell you something exciting....share some great happening. I just cant think the way I used to.

A large majority of my posts came from pain, from indecision, from unhappiness. I'm just not in that place anymore.

I'm good, really good. The girls are fine. Caitlin is getting accustomed to this advancement in school and Natalie is Natalie, still fighting her treatments and still being just so darn cute. Ive said many times, its a good thing she is so cute....keeps her out of a lot of trouble.

We do have a new addition to the family courtesy of Grandma Jo. His name is James. He's a hermit crab. I have pictures, but that's another post for another day.... I will however leave you with a video of my breakfast time serenade. Maybe this will give you a better idea of Natalie's cuteness factor. much love ~j

For you, you, you and you......and maybe you too.

We all have demons. We all have things, people, decisions that haunt us.

What defines us, what sets us apart is how we choose to deal with them.

We can retreat, we can hide away in shame, defeat, and embarrassment, or we can fight.

Tonight, I beg you to fight. Silence the voices that tell you that you cant take anymore. Push away the thought that it is just too hard....turn a corner, make a change, break away from what you know. Its possible. Ive seen it. Ive experienced it.

This post is for a friend who is detoxing this weekend....he's stepping up, making a change and moving on. Nothing but best wishes and good vibes his way tonight, and throughout this tough time. Much love! ~j

Day one and day two of 5th grade have come and gone. Caitlin has done fabulously. She's not too keen on switching classes but I think it will grow on her.

Natalie's antibiotics are going well. No more fever and her cough is improving.

And me? Im looking forward to football season. Saint's first preseason game is Thursday against the Patriots. Cant wait! Geaux Saints!

Keeping it short and sweet tonight peeps. Hope all is well on your end! Much love ~j

to bitch or not to bitch, that is the question.

Every time I open this page, there is a burning question that I must answer. Do I bitch? Do I vent? How am I really feeling right now? What is really on my mind?

I'm tired of bitching. I'm tired of venting....wait....am I starting to bitch about bitching? ugh! How annoying is that? :)

School starts Monday. I don't know whether to be excited or sad or worried. 5th grade. Caitlin is going to be in 5th grade. Questions I don't want her to ask. Answers I don't want to give. My sister asked me if I remembered what I was doing in 5th grade....I remember, oh how I remember.

Natalie is on antibiotics again...cough, sinus congestion, ear infection. Her medication list grows and shrinks and grows and shrinks. Her weight is holding steady, so we're going to focus on the good parts.

Other than that, its just the usual. Kids screaming, phones ringing. Daddy can't do this and Daddy cant do that this day or that day. Its gonna be fine though. Why? 'cause I'm awesome :)

love to you and yours! ~j

always on my mind.....

Fight, fight, fight to the death....

Life gives you lemons, make lemonade.

Shit happens, then you die.

Life goes on.

Ahhh, F%#k it.

The only sure thing in life is change.

Don't be a victim.

Can you change it? nope. Can you do anything about it at this very moment? nope. Is your piss poor reaction to the situation helping? nope. Then f&%k it. Don't worry about it.

One foot in front of the other.

One day at a time.

Tomorrow is a new day.

Don't be so hard on yourself.

Things will look different in the morning light.

But for the grace of God go I.

I tell myself these things daily. I may say them out loud, to myself, or to someone else. Maybe not all of them, but at least one...at least once a day. This has been going on for years....my internal dialogue is strong, is loud, is relentless. It comes from a place of love.

There once was a little Catholic Italian lady. She stood about 4'11, but her stature never matched the size of her personality, the depth of her understanding, nor the reaches of her influence. She was an orphan. She was a wife. She was a mother, and a mother who had lost a child. She was a grandmother, a great-grandmother, and she taught me all I needed to know about when to scream, when to whisper, when to cry, when to laugh, when to let it go, and when to take it and run.

I wonder what she would say. I wonder what she would do. I wonder if she would laugh, oh how I miss her laugh. I miss her. That seems like the understatement of a lifetime. Its inadequate, hollow. I miss her like you would miss part of your being, I think it may be how people who lose their mothers feel. Lost. But I carry her with me. To love me is to love her. Oh how I wish she were here. I'm proud to carry her name. I hope I do it justice one day. I hope my grandchildren think half as well of me. I'd consider that a great accomplishment.

Its finally Friday and....

My girls are here. Both of them. Running together, playing together, quite possibly destroying the house together. Its the most beautiful noise in the world to me. I wish I could bottle it, take it with me. The laughter, the bargaining, the arguments, the compromise, all of it. They are beautiful people.

I once thought that life could never be so simple again, and perhaps it cant. However, the principles remain the same. Love others regardless of what they have done to you. Forget the arguments quickly because they wont make a difference in the end. Enjoy everything, even a cardboard box can be exciting. And compromise doesn't mean you lost, it means you both win a little.

My girls are daily reminders of what's really important. They make me strong, they make me decisive, they give me direction, they make me a better person. I don't know where I would be without them. Caitlin's grandmother looked at her father and me when Caitlin was still very small and jokingly said, "She's going to end up raising the two of you." It was a joke and no harm was meant, but all these years later, it has stayed with me, and how true it is.

tonight

Monday mood swings.....

I don't like drama. Its definitely not my forte. I prefer simple, to the point.

Like it matters, though. Drama follows me. It surrounds me. I hate it.

I believe when most people look forward to life, they look for adventure, they look for excitement, they look forward to moments that will make great stories. I just look forward to peace, just peace.

Natalie has waged another war against dairy products, except cheese and the occasional ice cream cone. This makes supplements nearly impossible. Scandishake is out most of the time, Carnation Instant Breakfast is out, no adding heavy whipping cream to anything....I'm screwed.

On the flip side, merely by chance, we found out that Natalie will eat Lo Mien....yay! I can eat Chinese food without hitting up the drive through window first! :) She seems to be branching out a little...just a little though. If I can add one new food choice per week, I'll be a happy mommy.

Caitlin is with her Dad again. I got pictures of her getting a pedicure today via MMS. She was excited. She needed a little pampering and I'm glad that her stepmother does those sorts of thing for her and with her. School starts soon....very soon. Ugh! Waking up at the crack of dawn, fighting about bed times, wake up times, dinner times, homework, procrastination.....oooooh my head hurts just thinking about it.

And as for me? I'm cold and munching on Dove chocolate bars and Slim Jims simultaneously. Yes you heard me correctly. If I read this somewhere else, I would cringe too, but for some reason its working for me right now. This can only mean one thing....its gonna be a heck of a week....I almost feel sorry for the people around me....almost. Went looking for apartments for a bit today....not fun at all. The good thing is that there are plenty available...I just have to adjust to living on a single income again. ugh!

But all is on the up and up. Hope it is on your end too ;) ~j

Im pretty sure we've gone over this.....

For those of you who don't read regularly, for this portion of the evening, I will refer you to an earlier post titled "Who do you think I am?"....read it and read it carefully, understand it, know it.....

For those of you who are around more frequently, let me just say that today has been mind blowing for me. To be critiqued on the content of my blog is earth shattering, these thoughts are mine, therefore they are never wrong. These are opinions, points of view, and feelings....there is no right or wrong. You may disagree, but in this world, at this moment, while I type, I am not wrong. There are very few things that I do in life that are for the sole benefit of myself....VERY few. This blog is one of them.

I considered deleting the whole thing, but decided to blog about it instead.

I liken it to my own personal therapy sessions....I send these tidbits of my life out into the abyss, sometimes there is a response, sometimes there is a simple nod of understanding, sometimes there is nothing....and that's okay with me.

If you are here, consider yourself the voyeuristic type.....because you can gain little use from this blog, other than knowing that you are not alone in your quest to deal with CF, to deal with life, to take every bump in the road, every curve ball that life throws at you.....and you can manage. Trust me, if I can manage, anyone can.


I am not strong, I am not unique, I am not special.....

I make mistakes because I breathe. To err is human.....

I try to live day to day. Looking further than that is dangerous. It makes you vulnerable. It makes you dare to hope, to dream, to think that maybe, just maybe, there is life beyond what we surround ourselves with on a day to day basis.....

I try to live day to day....but hope is winning out, shadows are receding, and once again life is taking over....I am vulnerable, I am broken, but I'm still me. And I'm going to write what I want..... much love ~j

I'm Alive

CF on the run.....and running over me.

So all of us CF moms out there struggle with the balance of keeping life as normal as humanly possible, and still getting in every treatment, every nebulizer, finding food that has enough calories to count without being ridiculously unhealthy....its daily.

Life has been a pretty steady go, go, go for the past couple of weeks. Adjustment to a new house, new time lines, new routines and still attempting to find that balance. Work, play, and an extra pitter patter around the house make for some hectic times...but we're managing.

The best cure for insanity is routine. Regardless of what else is going on, there should be some things that always remain the same, or as close to it as humanly possible....

We wake up and do a vest treatment. period. end of story. If we have to be somewhere, we get up early, its just the way it goes....if we happen to sleep in, that's fine too, its done when we hit the floor and get good and awake.

No matter where we are, Natalie has snacks at her disposal for snack times. Snack times remain the same, just like meal times. This requires that I carry a bag that looks much like I just came from the grocery... disposable plastic spoons by the box, cups of applesauce, enzymes in my purse, enzymes in my bag, half the time my purse looks more like a pharmacy than an actual purse....but its a must, especially if you're on the road all day....stopping every 2 hours to eat or grab something just isn't feasible when you live in the area I live in....its usually 20-30 minutes for me to get where I want to go.....and it makes mommy gain weight faster than Natalie ever will ;) plus, it gets mad expensive to try and buy EVERYTHING while you're out....

We are blessed that Natalie's mid day routine is focused strictly on play time, her nebulizers are only once a day and therefore we are free from the time we finish her first vest treatment, until right before bed.

Dinner is later for us...we aren't ready until between 7 and 8....if there is company coming later than that, the meal is still made in time to feed Natalie between 7 and 8, if she chooses to eat again when everyone else does, so be it. This makes dinner time less of a hassle and much more relaxing....(when she isn't trying to get me to dress her baby dolls while i eat :)

Our bed time routine is a little more hectic....she's 3, she's never ready to go to bed so bath time is our cut off. We get a bath every night and both of the girls know that after bath....its quiet time...vest time....nebulizer time....time to just sit still. This goes over much like a lead balloon with Natalie and the fact that Caitlin is 10 and no longer finds it fun to play in the bath tub with Natalie makes the process long and not near as relaxing as it used to be....its another hair pulling, make you want to hide in a corner part of the day...there are many with having these two girls the ages that they are. I honestly thought that having them this far apart would be a blessing, after all what could a 3 year old and a 10 year old possibly have to argue over? The answer to that is everything.....EVERYTHING.

It looks pretty when you write it all out...it looks like you could fit it into a nice little box and put a bow on it....but it doesn't always work.

Vest system hoses flying off, being pulled off and used as a hair dryer when mommy isn't looking....

The Vest being unplugged from the wall by a mysterious person named "Idunno" followed with a proud exclamation, "Mommy, I all done, I got all the junk out!" ......

Caitlin screaming because Natalie touched her, or knocking one of her dolls slightly askew while she was doing "inventory".....

Natalie screaming because Avery has decided that her vest console is the new place to sit....or pushing the buttons.....or just plain looking at her wrong...

It runs over me sometimes....sometimes I don't feel the need to fight back...sometimes I am overwhelmed, sometimes I am tired, sometimes i wear blinders and don't want to see the dark circles under her eyes, or just how tiny those little legs are, I don't want to feel how thin she is when she crawls in my lap....I just want it to go away.....

Its a crazy life, you worry when no one is looking, you put on a good face and smile and tell everyone you're fine, she's fine, everything is fine....just fine. No one understands what creeps in when no one is there, no one understands why you hesitate just a tad when correcting her, no one understands why you just cant bring yourself to tell her no when she asks for a toy every single day of the week....no one knows what its like to live with the very real possibility that you will bury your child. It makes you hard, it makes you indifferent to life's smaller issues, it makes you rush....I need to provide her with her life experiences now, what if tomorrow is too late. I want them to have everything they want and I want them to have it together, memories together, playing, fighting, hiding under the covers with a flashlight....I need that for them now. I am growing impatient with myself, but there is only so much I can do...I work enough.... I want my girls to remember me, not my job. I want my girls to see life for what it is, a beautiful experience...not a chore....its not a chore.

Its Monday.....

Its Monday. Normally I would go on and on about how I hate Mondays and how I really should be resting after getting practically NO sleep since Thursday night.

Its Monday. Normally I would tell you about work...I would entertain you with a story or maybe just a general statement about how I really do love my job, regardless of what I say.

Its Monday. I should be curled in a ball on the sofa, regretting more than 50% of how Ive spent the last 29 years 11 months and 20 days...my inner dialogue torturing me....relentlessly.

Its Monday. I should feel drained. I should be agitated. I should be tired...I should be yelling for naps and quiet.

Its Monday. I normally would tell you about the yucky virus Ive had over the weekend and how I am trying to avoid giving it to Natalie....

But I'm not any of these things today, and I'm not going to do any of these things today. Its Monday and for the first time in a long time, I am okay. The world makes sense. Life is as it should be. My mind is quiet.

I have no complaints of how unpredictable life is. I have no rantings of how much I hate CF. Natalie is doing well, her appetite has been wonderful today, thus far. Caitlin is with her father and therefore in very capable hands.

Maybe tomorrow will be different....maybe tomorrow I will fall apart. Maybe insanity, fear, doubt, and chaos will creep in and today will seem like a sick joke.....maybe....

Life is not perfect. I'm putting pieces back together, hoping that I remember where they go. I don't have a lot of material things, and maybe I never will....but I'm happy, my children are safe and happy and as healthy as they can possibly be......and that's good enough for me.