my personal pick-me-up

A phone call and a prayer.

I got a phone call from our regional CFF office.

We're putting together an event for the Northshore to dwarf all other local CFF fundraising events. Its going to be huge. Its going to be massive. Its going to be amazing.

I have that fire again. It strengthens in waves, but its always there. An ever burning glimmer even in the coldest and darkest of times.

There will be a cure. If not a cure then a real treatment. A treatment for the root cause. A treatment that will make this disease manageable, survivable. It will happen.

I am not the brains that will figure out the right combination of molecules.

I am not the hands that will write the formula.

But I can be the feet that walk for the cure. I can be the voice that talks until everyone hears, until they feel our need and desperation so closely that it is as if it is their own.... and I can love my daughter and everyone with this disease enough to make the idea of failure an impossibility....

One step at a time. One dollar at a time. One memory, one plea, one heartbreak at a time until they hear....until its done, until there are no more children leaving their parents, until there are no more parents leaving their children....

We fight alone, but we fight as one.

We fight for a common goal, for a common future.

It will be ours.

Reasons that I became a nurse: A lighthearted insiders pov.

I wandered down the hallways. My body was aching, head swimming, numbers flying through my mind....this lab, that blood pressure, this O2 saturation, those with fever, people bleeding...people depending on my judgment....give the med, hold the med, apply O2 and hope for the best, or relinquish control and call the doctor, grab the Tylenol, bandages.....

It sounds dramatic, but it really isn't. Its my work. Its what I do.

Through this cloud of thoughts waiting to be processed, the thought entered my mind: Why do I do this?

Being the mildly twisted human being that I am, I actually started to answer myself....this is what I said.

TOP REASONS I BECAME A NURSE

I thought that being exposed to every new strain of antibiotic resistant bacteria before anyone else was what they meant by "living on the edge".

The idea of dying from something I contracted at work, rather than old age was kinda cool.

I think that support hose are cool....and even if they aren't, the spiffy spider veins you get from not wearing them and your vessels rupturing from the pressure of standing on your feet all day are really sexy.

I thought that the idea of people trying to sue you for no reason and getting questioned by state auditors would be fun.

Working with people who are just as messed up as I am is awesome....cause you know, most all of us nurses are alike....most of us anyway....except her, and her, and her, oh wait damn, who the hell is that walking down the hall?

I heart cafeteria food.

The smell of hand sanitizer and soap is always in style.

Washing my hands until they crack and bleed is a good way to spend my time.

Wearing pajamas to work is awesome....wait, what do you mean they aren't pajamas?

Shin splints are cool and so is plantar fasciitis.

Who needs knees?

Looking sexy at work was never on my "to do" list.

Its cool to look like youve been beaten to death after you get off of work.

Keeping doctors from accidentally killing my patients is EXACTLY what I thought nursing was going to be about.

I never wanted to look at a bowl of rice crispies the same anyway.






Hope your week leaves you well ~j

staring at the page.....

Day four of a headache.....

Day (insert huge number here) of having writer's block.

This blog was supposed to be raw, real, mine.....

Ive censored it.

Ive deleted three posts in the past month.

Three.

Where is the line. Where and when is it just too much?

Ive come to realize a few things through my deleted blogs....my life is not normal. Even though it is what I am accustomed to and have been for quite some time (like my whole life).....Even though Ive done the best I could under the circumstances Ive been dealt, chosen, whatever........my life is abnormal and shocking to some people.

It makes me feel bad.

Kinda like when you were a little kid and you were all excited to tell your friends something and when you did they rolled their eyes and walked away.....yeah that kind of bad.

I used to be proud of my blog....it used to be home. Now I'm not so sure.

random....

awww man, not again....

I awoke this morning to a familiar sound.....I was hoping that it was just a random event....

Then this morning while driving Caitlin to school, I heard it again....a cough, Natalie's cough.....

Ugh! *tears* s*&t F$%k D#$n h#ll!!!!

Call me neurotic. Call me insane. My heart melted.

I hurried in the door, started Natalie on her treatments, and dared her to move....

We've been in a lackluster state of doing treatments. She plays with her dollhouses, rides on her pony, chases after any human being that happens to be near all with a nebulizer mask on her face....I don't suppose that's a bad thing, anything to pass the time.....

But my mommy guilt kicks in as soon as I hear her cough....maybe if I didn't let her run around, what if she has spilled some of them while I wasn't looking and that's why shes coughing, should have made her do another one that time that (fill in the blank)....that's what I get for spending so much time at work....being so tired....stupid juli, that's what you get for not being a drill sergeant....that's what happens when you lay off.....

Poor Natalie. She's going to be afraid to cough in front of me. I parked her on the sofa, directly across from me.....staring at her nebulizer.....

breathe in....

breathe out....

mentally encouraging the medicine...."work, work you stupid vials of God knows what.....work"....

*cough*

*sigh*

Oops, I did it again!

I deleted a post.

Some may not even know it was there. That's okay.

I vent here. This is my place to go. I know Ive said that before....but I couldn't leave it up.

I was ashamed after it had been there a while. I started to take other things off of my blog....like the Feedjit that tells you where your visitors are from, my facebook badge, I changed my profile picture to one where you couldn't see my face....I was hiding from my post.

Soooo rather than hide from my post....I just deleted it. Right or wrong, good or bad, whether I should have posted it in the first place or not...it doesn't matter. Its gone.

All of my best. ~j

A moment to grieve.

The girls are fighting over toys, over whats on TV, over anything they can think to fight about....I'm frustrated. Nights like tonight I want to lose it. Nights like tonight I want to look my children in the eye and explain to them that there is a very good chance that their lives as a dynamic duo may be short....shorter than most....I want to sit them down and explain just how serious this whole CF thing is and try and get through to them that fighting over silly dolls and toys is not what they should be doing....they should be holding on to each other for dear life.....they should be doing anything, anything but fighting.....

I would never do that though. That would be absurd.

I cant help but feel it from time to time though. The pressure of not knowing when or how this disease will progress is immense....its suffocating.

I sit in front of the computer alone and in the dark. I watch the videos and listen to the songs. You know the ones...."Breathe" by Matt Scales, "Angels in Waiting" by Tammy Cochran...yeah, those. I take my moment to grieve all over again and again and again....I know it will never end....there is no end.

I want to take this away from her so badly. It shouldn't be her, it should be me.

Its just not right.

It doesn't make sense.

Not a whole lot in my life has made much sense though....I suppose I should be accustomed to such chaos and confusion....

I just cant wrap my head around this sometimes though.

But I can fight. That's what I do. That's how I cope. Medicines, treatments, calories....I fight it in my mind. I fight it in my heart. If only that were all it took....CF would have been history long, long ago.

Oh how I wish that were the case.

Hello 2011!

Here we are. Another year, a new decade, a new house, a new life.....Thank God!

I have spent the last 10 years of my life in a terrible cycle of dependence, co dependence, trying to figure out if I was right or wrong, carrying guilt, carrying loads and loads of regret, what ifs, and grief.....its been a really long 10 years....and now its over. I know that my entire life has been leading me to the point I am at right now....So many things had to happen exactly the way they did in order to prepare me and I am thankful for every moment...the good, the bad, and the ridiculous.

We are good. Crazy good. Natalie's treatments are going smoothly. She is healthy right now and I am happy. Really happy. Caitlin is muddling through school, she is an amazing student, sometimes I think she just wants to hang around the house with Mommy and Natalie....just a few more months and we will be back to summer vacation....5 more months.....my my that's terribly soon, isn't it?

It still amazes me how time flies by....How one moment you're holding your little one in your arms and the next you're sending them off to school...

Speaking of school, I have found a preschool that has openings and is licensed to administer medications....We're going to check it out today...I want Natalie to have some socialization before she goes right into school in August. Nearly 5 years at home with Mom makes for a spoiled little girl :) She is good though, she really is, I just want to break her in easy, maybe one or two half days a week....Maybe its really to break me in easy. She is ready. She wants to ride the bus and get a backpack and go with her "sissy". School is a big deal to her and the idea of being able to go is wondrous and amazing to her....I hope it stays that way :) I don't anticipate that being a problem.

Other than that, there are only my personal goals to look to. One of my co-workers asked me if I was pregnant the other night at work....*sigh* *tears* *sniffle* "No, not pregnant, just fat I guess" was my response....So I'm going to join the masses in an attempt to take off a few pounds....not with crazy diet schemes or anything like that....I'm just going to organize the food pantry a little differently....I know Ive spoken about "Natalie food" before....going to have to stay away from the Natalie food :) and no more fast food....Ive been pretty good about that lately, but I'm just going to keep at it. Also, I'm going to walk with the girls while they go bike riding, that way they can ride farther and we can all get our exercise in.....that's the plan anyway. There are always excuses not to....this time of year my excuse is the weather. I hate being cold. I am cold in the summer, let alone when its 40 degrees outside. I just keep telling myself I wont be cold once I start moving....its just so hard to get moving sometimes.

Beyond my weight, there are other goals for the year. Its back to school in August....When Natalie starts school, I am too....time to finish...time to get that BSN, like Ive been wanting....well, like Ive wanted for the past 5 years anyway....maybe even just go ahead and get my masters...its going to happen, either way. Hopefully it wont take too long. I'm looking forward to the challenge...I find that I feel the most alive when I am progressing, moving forward, and I really need to move forward from where I am. I love my patients. I think that my administration needs a reality check....and the only way that I feel like I can fix a system like we have is to fix it from the inside out....and I need a few more letters behind my name before anyone will listen to me.

So here's to long term goals, short term goals, to successes, to failures, and to never giving up.....because there's always a new year. I hope that the new year brings all things good and peaceful to your homes and your families. much love ~j