Friday, February 25, 2011

Ducking out.....

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

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

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

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

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

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

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

my best to you. ~j

Wednesday, February 16, 2011

Hellooooo ElectroFlo 5000.

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

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

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

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

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

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

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

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

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

My best to you. ~j

Well that didnt take long.....

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

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

I cant take it.

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

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

I love my bubble.

You guys know this.

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

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

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

My bubble is good enough.

Friday, February 4, 2011

a moment.

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

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

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

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

Its exhausting.

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

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

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

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

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

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

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

So the question becomes, what defines a person?

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

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

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


Thursday, February 3, 2011

CF Momma stage fright.

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

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

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

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

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

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

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

much love ~j