Friday, August 31, 2012

Life, always kicking us while we're down.

After learning about the loss of my sister's best friend, the week continued to just be a rough one.

With all the craziness that is the quickly approaching wedding, things just keep going wrong.

Kyle had his qualifying exam on Tuesday, which was the morning I was a blubbering mess- so much for being a supportive wifey! Sorry honey. Wednesday was a long day of work, and then Thursday my car decided it was the perfect time to break. A few check engine lights and over 500 dollars later, my car is now fixed but it was just insult to injury.

Then later today we learned Kyle did not pass his qualifying exams. The ones he studied every waking second of every day over the entire summer... yea those... he didn't pass. He gets one more try to retake them. In January.

It's going to be a long semester.

Even I feel defeated.

Life, eh?

Tuesday, August 28, 2012

Elegance of forever

“When someone that you love's like fireworks suddenly burning out in the sky and everything going black.” - Muriel Barbery, The Elegance of the Hedgehog
And suddenly, all that's left is the spectacular show you can only call upon in your mind. Smoky shadows linger,  merely the dust the fireworks left behind, and if you stand too close the smog will fill your lungs, and burn your eyes. 

Yet, somehow you need this forever darkness to truly appreciate the beauty and light that you were able to see. 

Death walks a fine line of letting go and holding on. Holding onto the visions engrained into your mind, like the lingering imagine of fireworks behind your eyelids; all the while, gingerly balancing the courage to know in your heart, that no matter how beautiful the show was, it's over. We will move on, and we will see more fireworks. We will continue to live, but we shall never forget.

"...maybe that's what life is about: there's a lot of despair, but also the odd moment of beauty, where time is no longer the same...[like] something suspended, and always within a never. Yes, that's it, an always within a never."  - Muriel Barbery, The Elegance of the Hedgehog

 You're life was spectacularly beautiful.  You will be missed by many. Breathe easy lovely lady, breathe easy always. 

Monday, August 13, 2012

Day:Night as Depression:_______


Continuing my alarmingly bi-polar emotions.. I have some pretty awesome news! My kalydeco was finally approved. My mom, being a mom, called up the insurance company with my step-aunt (who used to work for said insurance company) and they proceeded to huff and puff and blow the house down. Or something to that effect. All I know, is the company called my clinic, said they would work something out, and then...BAM, a few days later they said they would approve my usage until 2017. That's 5 years people. I'll be 28 when this deal expires.

I am, thankfully, feeling a ton better. I started a 3 week course of some wonderful MRSA killing agents. My obnoxious moodiness is gone, phew, but stress is still here. For example, we are still counting down the days till Kyle takes his PhD qualifying exams for which he is doing nothing but studying, eating, feeling sick, not sleeping, and my favorite of all continually whimpering that he has to do this big exam.  Another example of a major stressor in our lives, is oh, the wedding. It's not that bad. I finally finished the hanging pennants to hang around the tent. I made something like 80 something feet  of the stuff. Insane. I went a little overboard on fabrics. com.

Yikes. This post is all over the place--- in true mania form, of course. =)

Speaking of being a bit mental- I read my old diaries to find some good dates about when kyle and I shared our first kiss, and first held hands, and whatnot. AND MAN! Reading my diary is exhausting. I was out. of. my. mind. Almost literally. I was all over the place emotionally.It was scary to read.  Makes me wonder if I should have been seeing someone the whole time. Although, I must say, sometimes I'm quite funny. I'll be talking about something so serious and morbid and I'll out of the blue say something like "Oh, yea, by the way, I won a hamster at the pet store today. I named he Q. " and then continue on my sad morbid story without a blink of an eye.

It made me really reflect on how I live my life now. In so many ways I'm completely the same. Thoughts are just moving so fast that they end up all over the place, and if I'm writing them down, well.. let's just say instead of a van-goh I'm finger-painting over here.  Although, I am a whole heck of a lot better, I know now that I usually  need to stop collect my thoughts really think about what I want to say, before I say it. After glancing over this entry it's probably only when I'm speaking. Although, kyle has helpful reminders like when I 'm trying to tell him something and I start 7 different sentences "Okay, so I was" "No, he" "So this thing," "Ummm" "oh he and" ----> this happens more than I like to admit. Kyle will jump in, "Beth, you haven't said a single thing yet, but you're somehow still talking?"  Yup, take two.

Let's see if I can wrap this up so everything sounds like it was intentional:

In conclusion, reading those old diary entries really helped me reflect on how I live now. It reminded me that problems that seem huge, end up being insignificant in the long run. It made me realize just how all over the place I can be. Being more aware of myself, I feel confident I can handle the stress we are juggling as a family at this point in time. Although, having kayldeco will aid in that department, a healthy girl is a happy girl!

The end.

PS I felt like I was writing an essay for my conclusion.

Thursday, August 2, 2012

The "She's completely overreacting and being melodramatic" Post

This is a post that may not get published, and may make no sense. I just need a place to see if I can't get all my thoughts and stresses out. They won't be in order, they won't make sense, but rarely does anything fit in a nice neat box.

I'm struggling. It's no secret I don't handle stress well. Between stress and change, I get overly emotional, so much to the point that I was once mis-diagnosed as being bi-polar. Turns out I just have an adjustment issue. Having CF amplifies this problem. I like to plan, and when things start falling out of line of my meticulously planned schedule I get frustrated. Or I miss one dose of an inhaled med, and all hope is lost.

I struggle. I struggle putting myself first. Putting my health first. I like to please other people. I want their opinion of me to be a good one. I don't do well with peer pressure, and I am a complete suck-up. This is not a good combo when it comes to having CF. Sure, if I'm tired and I know the best thing for me is going home, taking a nap, and guzzling some fluids... yet, in this tired state, I'll happily run myself into the ground at someone else's expense. To make someone else's life easier, even if it makes mine more complicated.

I struggle with acceptance. I never struggled with this when I was younger, but as soon as I was aware of how big, that difference was between myself and my peers I've struggled. I go through phases where I just won't quit. I am the boss. CF doesn't define me. The whole nine yards.  Then dip back into the second point I made where I don't put myself first, and all hope is lost. I suddenly flip flop unable to handle the fact that I will always have to take time out of my day to sit hooked up to a machine, whether I'm attached by vest or by nebulizer. I am overwhelmingly aware of all the extra time, and effort, and worry that goes hand in hand with living with CF. And this awareness is painful. It hurts. It runs deep and it hurts.

I struggle with motivation. I could give you a hundred reasons logically why I want to do something, and yet I find myself struggling with daily routines. There's nothing more I'd love to be than compliant. And yet pills get forgotten, and inhaled meds are skipped. I never feel good about those decisions but I consciously make them. I'd love to keep all the counters in the house clean, but everytime they start off clean, it only takes one item out of place for everything to snowball.

Lastly, I'm tired. I'm tired of these extremes I go through. I'm tried of people telling me to 'just do it.' I'm tired of people assuming they know exactly what my life is like. Even with CF everybody's life is different. But mainly I'm tired of disappointing myself. Not loving myself enough, not holding myself accountable for my decisions, I'm just tired of it all.

Blah. dramatic much? Can you tell I'm not feeling great?