Saturday, October 30, 2010

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.


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

Wednesday, October 27, 2010

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 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.

Tuesday, October 26, 2010

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.

Monday, October 25, 2010

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

Wednesday, October 20, 2010

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 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.

Tuesday, October 19, 2010

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

Friday, October 15, 2010

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.

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.


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 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.


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 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.

Monday, October 11, 2010

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

Thursday, October 7, 2010

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 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 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

Monday, October 4, 2010


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