When I was about 5, I was spending half of my day in morning kindergarten and the other half playing in a sandbox at Andrew's house. His mother graciously agreed to watch me for the afternoons while my Mom juggled the fine line of being a great employee and finding enough family time.
Sometime in the next year Andrew and his family moved out of state and I moved onto full time first grade. One fall afternoon I learned that they were coming to visit us! I was giddy with excitement. Andrew and I always had so much fun playing together, we were such great playmates that we actually got 'married' with vows, rings, and cheering moms.
When their white mini van pulled onto our blacktop driveway, I raced for the front door! Andrew matched my speed and we met smile to smile only separated by a thin piece of glass; the front door. We hugged and said our hello's and we're about to run off to play when Andrew's mother reminded him that , "didn't he leave something special in the car?"
A grinning, freckled face Andrew cheerfully exclaimed that he had a present for me! Immediately visions of a pink Barbie box danced through my head, or even better Kitchen Littles. In less than a minute, I had created such high expectations through my own greediness that when I unwrapped a hand-drawn and masterfully colored picture of a butterfly, I was secretly devastated. Publicly I smiled, exclaimed I loved it, and put it in my room. Eventually my mom hung it on my wall.- my daily reminder.
For years I carried this memory around with me, and a subtle reminder of selfishness, disappointment, and learning to gracefully move on. To this day, reliving this memory still makes me painfully aware and even uncomfortable of my own personal greed. I struggle distinguishing between needs and wants. I was so wrapped up in my own personal greediness and pettiness that I couldn't fully appreciate what I was given; a gorgeous and heartfelt gesture. A beautiful picture that I could cherish for years. Instead, I was disappointed that they didn't give me a plastic doll with absurd proportions and too-tiny clothes.
For a very long time I kept that picture. When I moved away to Virginia, I believe I let that picture go. Although I may not have that picture anymore, I will always carry that memory and that humiliating lesson and how it made me grow as a person.
While I still have flaws, and I still struggle, I simply understand these things make us human. We can only expect to grow and learn and become better people. Today, I woke up on the wrong side of the bed grumbling about nothing. I was holding onto my selfish ideas that I had for the day, that the day wasn't delivering and I felt that same humiliating disappointment that I did way back when I was unwrapping that fragile picture. However it's days like today that I need to relive that memory in order to appreciate that it's all part of living. And I really, really like living.
Monday, October 1, 2012
Friday, September 14, 2012
4 minutes
Let's see how much updating I can do in 4 minutes. (The time I have until I need to get dressed for work).
1. 4 out of 6 people failed on Kyle's committee. We feel better because it wasn't just him. He'll take them again in January. It's still going to be a long semester, but we'll make it.
2. We had to buy a car. Kyle's car really started crapping out on us, and with his approaching birthday (and expiring license) he needed to get a MD License, to which his car wouldn't pass state inspection. We ended up doing a one-pay lease for a new prius-C. We are enamored.
3. Number 2 means we now have one more bill, yay car insurance! I think, besides medical, that was the last thing we needed to take over and now we're completely independent from our parents. Can't say the same for our older sisters though!
4. We got married! "married" Picture overload!!! First & last two are from our 'day after session' with a professional. Middle is infront of the ceremony nook I set up. We didn't end up using it since it was pouring when we started, but later it cleared up and we hopped in front for pictures.
1. 4 out of 6 people failed on Kyle's committee. We feel better because it wasn't just him. He'll take them again in January. It's still going to be a long semester, but we'll make it.
2. We had to buy a car. Kyle's car really started crapping out on us, and with his approaching birthday (and expiring license) he needed to get a MD License, to which his car wouldn't pass state inspection. We ended up doing a one-pay lease for a new prius-C. We are enamored.
3. Number 2 means we now have one more bill, yay car insurance! I think, besides medical, that was the last thing we needed to take over and now we're completely independent from our parents. Can't say the same for our older sisters though!
4. We got married! "married" Picture overload!!! First & last two are from our 'day after session' with a professional. Middle is infront of the ceremony nook I set up. We didn't end up using it since it was pouring when we started, but later it cleared up and we hopped in front for pictures.
And the most exciting news? We got kyle's test back and he isn't a carrier for any known CF mutation. Holla! But I have a weight goal before we even go there. Blah. 122 lbs. Thats 11 lbs I need to pack on. All in all, things are lookin' up!
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?
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 dies..it'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 elsewhere...an 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:_______
Mania.
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 ...no" ----> 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.
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 ...no" ----> 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?
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?
Tuesday, July 24, 2012
Purgatory. It could be worse.
Growing up there was this awesome park my mother used to take me to occasionally. It was great on a summers day because it was usually cooler than sitting around. The park contains a deep chasm of granite rock. There are about two miles of hiking trails throughout the chasm. Some parts of the chasm even have silly names: Fat Man's Misery (a narrowing path between two rocks, optional to go through of course) His Majesty's Cave, and Lovers' Leap - just to name a few that I can remember. The chasm had donned itself the name: Purgatory Chasm.
I find it ironic that when I hear the word purgatory my mind automatically draws up the fun adventures my family had at Purgatory Chasm. I think the name suited the place very well, not quite in hell, yet not quite ready for heaven. Hovering in an in-between state.
Currently my life resides in sort of an insurance purgatory if you will. Not quite denied, yet not quite approved. Recently after fighting for a few months to get Kalydeco approved, due to unfortunate events, I had to return to my mothers' insurance plan. After only 1 month on Kalydeco, I was now faced with fighting a whole new battle, and yet the same battle I just fought.
While there is good news, (it's already on the formulary, the good news is balanced out with the bad news: they need proof from a DNA approved lab that I do infact, have the G551D mutation. Initially, I didn't think was a big deal. However, it turned into a big deal when they decided that they needed the official paperwork from the Lab. I was tested almost 20 years ago, when papers were taped into a manilla folder, and we prayed to the medical gods that nothing would be lost, or blow off with the wind.
Turns out the gods mock me. The one paper I needed, is the one that is lost. Gone. Poof. The only paper I do have that states my mutations, listed one of them incorrectly. Can you guess which one? I'll give you a hint, it wasn't deltaF508. Yup, they made an error 19 years ago when they wrote "G5112".
So as I'm mulling about in my own personal insurance purgatory, all I can do is wait. I've sent off my bloodwork for a test we already know the answer to, and now I can wait for 8-10 weeks for results... after I pay them 1,000 dollars. Psh. Is it really any surprise by now that insurance won't consider it an 'in-network' cost? Nope, no surprise here. But that's not all, let's continue on this purgatory tour, shall we?
After waiting a few months for results to come (all the while NOT on kalydeco) we get to send off the paperwork where we can "start the appeal process" as my nurse informed me. Wait, wait, so I don't get to go right on it after we hand in the newly printed, hot off the press, cost me one thousand dollars - results?? Well, of course not. Silly me, really, I should have known better.
All in all, I'm oddly okay with all of this. Granted, I'm NOT okay with the fact that I have to go through all these hoops after already performing like a circus dog for my other insurance company. But rather, I have too much already to stress about to add this to the list. There's nothing I can do except wait.
I think the universe might be trying to tell me something: perhaps time can bring good things? Those who wait, will be rewarded? Well, on the bright side? At least I'm not stuck waiting in here:
I find it ironic that when I hear the word purgatory my mind automatically draws up the fun adventures my family had at Purgatory Chasm. I think the name suited the place very well, not quite in hell, yet not quite ready for heaven. Hovering in an in-between state.
Currently my life resides in sort of an insurance purgatory if you will. Not quite denied, yet not quite approved. Recently after fighting for a few months to get Kalydeco approved, due to unfortunate events, I had to return to my mothers' insurance plan. After only 1 month on Kalydeco, I was now faced with fighting a whole new battle, and yet the same battle I just fought.
While there is good news, (it's already on the formulary, the good news is balanced out with the bad news: they need proof from a DNA approved lab that I do infact, have the G551D mutation. Initially, I didn't think was a big deal. However, it turned into a big deal when they decided that they needed the official paperwork from the Lab. I was tested almost 20 years ago, when papers were taped into a manilla folder, and we prayed to the medical gods that nothing would be lost, or blow off with the wind.
Turns out the gods mock me. The one paper I needed, is the one that is lost. Gone. Poof. The only paper I do have that states my mutations, listed one of them incorrectly. Can you guess which one? I'll give you a hint, it wasn't deltaF508. Yup, they made an error 19 years ago when they wrote "G5112".
So as I'm mulling about in my own personal insurance purgatory, all I can do is wait. I've sent off my bloodwork for a test we already know the answer to, and now I can wait for 8-10 weeks for results... after I pay them 1,000 dollars. Psh. Is it really any surprise by now that insurance won't consider it an 'in-network' cost? Nope, no surprise here. But that's not all, let's continue on this purgatory tour, shall we?
After waiting a few months for results to come (all the while NOT on kalydeco) we get to send off the paperwork where we can "start the appeal process" as my nurse informed me. Wait, wait, so I don't get to go right on it after we hand in the newly printed, hot off the press, cost me one thousand dollars - results?? Well, of course not. Silly me, really, I should have known better.
All in all, I'm oddly okay with all of this. Granted, I'm NOT okay with the fact that I have to go through all these hoops after already performing like a circus dog for my other insurance company. But rather, I have too much already to stress about to add this to the list. There's nothing I can do except wait.
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| Fat Man's Misery |
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