Saturday, December 22, 2012

21 Drafts

21 Drafts! And no, I'm not talking about beer. Although that would be the most awesome bar if they had 21 different types of beer on draft. But I thought it was interesting that over a couple of months I have accumulated 21 drafts that just sit there, waiting.

Such a bummer I can usually never finish something I start. =D

That's all.

Saturday, December 15, 2012

Upgrade - Downgrade: Hospital Style

Upgrade: No longer having to eat at 7 am, noon and 5pm. I'm digging the 'room-service' style meal plan. Call when you want to get your food, with pre-ordering as an option? Heck yes! I'll take it. Verdict: Upgrade! (The actual food? Well, that's a whole other story).

Downgrade: Ordering two IV's because I have more than 1 IV medicine. I've had the same IV cocktail for almost a decade. Never in my life have I been ordered to have 2 IV's at once. Luckily, the IV nurse saw my teeny-tiny baby veins and as she left go get a pediatric IV kit, she told them no way was she putting two in. Verdict: Downgrade. (Yay for awesome IV nurses.)

Upgrade: I have to get some blood drawn tonight for the initial 'in-patient' work up. A super awesome research assistant came by and offered to buy some extra blood fin the form of a 20 dollar Target giftcard. Well, by golly, sign me up.  Target here I come!  Verdict:Upgrade!

Downgrade: Having a 'heavy chest' from a lung infection is not the same as having cardiac chest pain. Unfortunately any note of "chest pain" qualifies you for 10 electrodes decorating your top half and 3 fun days of caring a mini EKG machine in your tank top. Hmmm. Verdict: Downgrade

Even though I'm back in the hospital, I managed to avoid this place for 18 whole months! Thats the longest I've gone since I've starting getting IV's at the age of 14. Thanks Kalydeco! =)

I also would like to point out that I don't feel nearly as sick as I usually do when I go in for a tune-up. I do feel that I need one, but I think Kalydeco has played a huge part in how I feel overall; which isn't half bad, all things considered.

So here's to putting your health first and using your vacation time to have a hospital stay-cation if you will. Hopefully this time invested here will keep me out of here for the next 18 monts, or perhaps, even 2 years. =D We'll see.

Monday, October 1, 2012

The butterfly Andrew gave me.

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.

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.

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?

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?

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.

Fat Man's Misery
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:

Thursday, June 28, 2012

Kalydeco Update and other Random Collections

First off, since I'm a terribly inconsistant blogger, I thought I would give you my 1 month Kalydeco update, about 2 weeks late.

Basically all the side effects I've experienced have finally passed... except for maybe the increase acne. Oh what joy! I still have an amazingly productive cough, and I cough less frequently. Very similar to when I get out of the hospital. I have a great supply of energy but still no weight gain. I'm thinking I may need to start checking my sugars once again since that could be the culprit.

I had a clinic appointment 17 days into my first Kalydeco month. My lung function went from 2.33 L (fev1) to 2.63 L (fev1); also known as 70% - 76.6%! Amazing. I haven't seen a number that high since High School... 17 perhaps? 6 years ago! Also, please note that 76.6% and/or 2.63 L is about 2% .2L higher than my post hospitalization numbers, which never stick around for very long before I'm back down hovering around 68-70%.

I've noticed since switching over from cayston to Tobi, that I cough more on tobi, and I cough more gunk up during this tobi month. It's pretty consistant with my behaviors without kalydeco. I respond better to Cayston for puesdo killing than I do on tobi. However the difference is a lot more noticable on Kalydeco.

The only annoying thing I can think of about Kalydeco is I find myself needing to clear my throat of mucus ALL the time. Almost everytime before I speak, I find myself *ahem*ing. Tremendously annoying when you're trying to softly hum sleepy sounds to a tired baby and you all of a sudden can't hum anymore because the mucus in your vocal cords has made you mute. enter *ahem* and then you're good to keep humming but baby is also now awake. Sigh.

Next order of business:this article. The one about parents suing and being awarded 13 million in damages for their child born with CF. Ronnie Sharp- over at Run Sickboy Run- posted this on his facebook page and it received quite a few comments. The majority of commenters all had something to say along the lines of "That poor girl! Knowing her parents think her birth was a mistake" or "those parents are so selfish!" "messing with god's plans" and so on.

For a long time I've struggled with accepting that some people just don't mind their CF. It makes them stronger as a person. Tough for me to swallow but to each his own. Yet, when I read this article and then the comments afterwards all those pent up opinions wanted to break out. I wrote a comment, and then deleted it, not having enough courage to click 'enter.'

I truly believe that when people with CF claim 'they wouldn't trade their CF because it's made them who they are today," blah blah blah, that it's a coping mechanism similar to denial. No one would choose to be born CF, no one would wish their loved ones had it, no one would wish this children had it... so why, do people keep telling me they wouldn't trade their CF for the world? If they were truly honest about not trading CF, why would they be so excited for advancements for a cure? You wouldn't trade it, yet if a cure were to roll around you probably would be in line to rid your body of CF. So why not admit that you would love to trade your CF?

These parents are suing the company because they believe they were wronged. I agree with them and support them. If I had the chance to be born without CF, but due to perhaps some negligence on the labs' behalf, I was born with those 2 mutations, I would want to hold the company who messed up accountable. That little girl's life will greatly differ from her twins' life. No matter how much they try to 'normalize' her CF, it just isn't normal. It is a genetic mutation. A mutation. Something that should not be existing and function in nature, but because of advances in technology it is. I am terribly grateful for these advances, but Cystic Fibrosis is not something I would ever choose to have.

These parents aren't selfish. This little girl shouldn't be horrified about the 'wrongful birth' suit, she should be grateful that her parents cared that much, and put that much effort in to help alleviate some of the cost associated with CF so that perhaps the margin of difference between her twin brother or sister, can be that much smaller. I think we need to support these parents just like we do all the other CF families.

And that's that.

Monday, May 21, 2012

Every listed side effect in action! Oh Kalydeco!

Week One:

After waiting for what seemed like AGES, I finally was handed my little blue pills on Saturday. My UPS driver laughed and said "Must be something imporant!" because I was waiting like a little kid for the ice cream truck. My UPS driver is awesome, if we're hanging out on the porch he hops out to say hi to Oliver and give him a treat, even if he doesn't have a package for us. He's just cool like that....but, I digress.

I ripped open the package and did my happy dance, singing "It's here! It's here! It's here!" I then had to spend the whole day waiting just to take my first dose. At 8 o'clock sharp, down the hatch!

12 hours later, another dose, my second was consumed. Around 10 o'clock in the morning, two hours after my second dose I noticed I started coughing a bit more. And by a bit more I mean, all the time. It would just spring up on me suddenly. I had no feeling of needing to cough, I just coughed one cough, and man oh man. I was bringing up gobs full of stuff. I was surprised all of it could fit in my lungs! What was interesting was that it required no effort on my part. It was almost as if I had finished some Autogenic drainage and was waiting for that final huff cough. You know, the one where liquid gold is produced? They were all like that.

After only 15 hours on the medication, I was already seeing results! That, and my nose started running like nobody's business. I also, for the first time in a very very long time, could breathe out of both notstrils. Oh the wonderment of the world. I was extremely sensitive to smell that day.

I also had some slight low grade fevers towards the end of the night, and was pretty tired from all that coughing. I definitely felt a little 'run down' or 'cold like symptoms' with general ickyness towards the night. Think low fever, achy, tired, headache, and of course cranky.

Throughout the week I've noticed on and off bouts of coughing. I've also managed to get some pretty nasty gunk out of my nose. I'm not sure if these plug like logs have been hanging out in my sinus' the whole time, or if I've sneezed them up there from my lungs. As gross as it is, I think they are just hanging out in my sinus', which is really grossing me out. I've snot shot (haha so fun to say!) 4 or 5 of these things. Having CF, I'm not stranger to gross mucus, but man, these things are nasty.

I've started having headaches every day around the same time. They last for the rest of the afternoon/night. Which is a bummer, because I get cranky. My headaches are concentrated in my sinus areas including the roof of my mouth. (I first thought I had a killer cavity, but upon furthur investigation we decided it was indeed the roof of my mouth.)

Today, on day 6, I have a sore throat, and my glands feel pretty big.

Another intersting side effect I've been experience is Acne. Oh, the joys! I can feel like I'm in high school all over again. Normally, I get a pimple here or there, but for the most part my skin is pretty clear. I always have some blackheads on my nose, and more recently my chin, but hey, everyone's got pores.

My kalydeco acne though? Oh it's big, bad, and it hurts! I woke up thinking maybe I smashed my chin funky at gymnastics and just couldn't recall faceplanting into a big blue mat, but really, that situation is something you remember. I just couldn't figure out what this huge painful lump was on my chin. Oh, yea, that's just a pimple that's about to eat my face, no big deal. Sigh. Oh kalydeco I didn't know you'd cause me acne! *Update- by day 9 I have a few more chin eating pimples to join it's friend*

Towards the evenings I've been feeling tired, almost run down.

So this week has been interesting. Lots of coughing, easy coughing, lots of gunk, lots of painful sinus action, and one giant pimple that has taken over my chin. (You probably think I'm exaggerating, but when I showed Kyle he said he couldn't see it... until I pointed it out, and then he got all wide-eyed and said "Oh. My. I thought that was just your chin! I'm so sorry honey!!" )  It's pretty bad.

I'm just thankful it's the weekend so I can catch up on some sleep and get some extra saline and vest time in to help all this junk on its way out.

One last thing I've noticed: the other day after easy coughing I noticed the mucous I was bringing up was white. Not green, not yellow, oh nay nay, white. Intersting? I think so! Exciting? For sure.

And now I will go and edit this at a later date so it all makes sense.
The end.

Weekend Update:
I did 3 days of manual labor, and I wasn't ready to pass out by the end of it. I'm definitely not as tired, less salty when I sweat (Kyle checked- what a dear!), and my headaches are letting up a little. I still have major chin acne, along with some forehead action too, and my sinus' are really hurting. My right nostril has a polyp, and has had it ever since I can remember, but I really think it's restricting the flow that kalydeco has started up there. I think all my sinus junk wants to come out, but is blocked by my huge polyp. It never caused me many problems before, but its to the point where you can see on the outside of my face, that it's begininning to look swollen.

I'm excited to see what my PFT's will look like in 10 days.

*Due to numerous spam comments the comment section will be closed on this entry*

Friday, April 20, 2012

Haiku for you

haiku's for friday

fevered and hungry
too weak to go outside now
the fridge is empty

Oliver is good
positive thinking I've done
I still feel like crap

Lungs are so junky
my eyelids are drooping too
fever nap calls me

an hour later
I might start to feel better
if not I'll be mad

say a few choice words
to my failing body 
stop being so darn sick! 

tomorrow is soon
this vest better have paid off
to do list is big

my projects on hold
making health my number one
so I can live on.

Yup. Sums up my friday. 
In quick other news, Spent a few hours figuring out an insurance debacle. Specialty pharmacy sent me tobi on automatic refill? Which messed up my cayston order. GRR so for someone else's mistake, I'm now paying the consequences. My oh my, nothing can be easy these days. On a positive note? I think I was able to fully resolve the issue and will have Cayston by next week. Hopefully this week of missing it can be corrected. 

Thursday, April 19, 2012

Apples from the fruit bowl

This was another post I wrote a while ago but never published. but it perfectly reflects how I feel these days. I'm yet again without an inhaled antibiotic due to insurance, shortages, and goodness knows what else. Sigh.


I'm upset. I cheated myself and my body didn't give up on me.

For the past month I've been without inhaled antibiotics. Not by choice, oh no, not by choice. It's been one insurance snafu after the next, and we all know how long insurance snafus take to resolve themselves.

Knowing I was in it for the long haul I upped my commitment. I tried doing saline, extra vest. And it was great, for those few days. Perhaps even a week slipped by. But when all was said and done I cheated myself. I didn't put forth the effort that I deserve. That kyle deserves. That our future deserves and I'm embarrassed.

I went to clinic prepared. Mentally prepping myself for those low PFT's scores. Gearing up the speech to present to my disappointed family about how low pfts were expected. That it's no big deal. And yet my body, my fragile, brilliant, exuberant body took over and I blew a 70%. My fev1 went down .03 L which in the grand scheme of things is hardly a change.

I was ecstatic. Underneath the initial excitement, I felt guilt. Guilt that I wasn't honest, and I was taking credit for taking good care of myself. I hadn't. I wasn't. I'm not. And I am embarrassed.


This happens quite frequently and I am getting tired of playing this game with myself. The guilty game.

I didn't have a great morning this morning. Oliver was really getting to me and I ended up freaking out on him when I found him on our dining room table eating apples out of the fruit bowl. On the table. Our almost 4 foot high table. Apples. Out of the fruit bowl. I freaked. He wasn't happy. I don't blame him I would have been upset if I was being freaked out on too. I was so unlike myself that I broke down. All I could think about was that terrible terrible time I once told my dying sister that no one could love her because she doesn't love herself. (This was when she was getting divorced from her 3 month husband. who was a douche by the way). That was such a dark time in my life. One where I intentionally hurt people, couldn't control my rage, and all in all was not nice. I wasn't happy. I was frustrated. I was hurt. And it scares me to think I went back to that.

I never want to go back to being in such a dark place. Oliver has since forgiven me for my freak out. Eventually I'll have to forgive myself. For now I'll use the experience as motivation to become a better doggie parent, and overall a better person.

I missed one med last night. I've been having crazy dreams and not sleeping well. I ended up being exhausted going to bed, and completely forgetting about it -- until the next morning. Sigh. These things happen. Try again. I don't want to cheat myself.

Tuesday, April 17, 2012

Win some, you lose some.

Yesterday I want to my gymnastics class where I really felt the effects of CF. As I was tumbling, head over feet, feet over hands, body up, around, and pray that I land - I noticed "I have no energy for this." I felt as if I weighed tripple my own weight. Every muscle in my body was tired. I was tired. And yet, I continued.

I didn't push myself very hard. I did only what I was comfortable doing. Making sure to rest and drink lots of water. It was still a nice class, and I enjoyed myself. When I was home I really noticed, CF is kicking my butt today. So to compensate I did an extra saline, and 15 extra vest minutes.

Well, today I pushed myself too hard. Oops. I went for a jog with Kyle and ended up twisting my ankle, on the leg with the already-sore-from-yesterday knee. Hobbling home, I decided it's the fact that I went out today. I might have been fine, if I hadn't stubbed my big toe, but I might have ened up pushing myself too far and really have regretted it.

For now, I can handle this sore ankle, and tender knee, knowing the benefits outweighed today's risks. I have decided to take it easy this week. I will not be going to my pole class on thursday in order to let my body heal up.

I've been trying to eat more calories lately. I've been really inspired by my friend. I've known her since we were 5 and we've been lifelong friends. She's recently on a healthy lifestyle change journey and she's really doing awesome in the first initial stages (which are always the hardest!) and so I've been thinking of her when I need that extra motivation.

Today not only did I eat breakfast, lunch, and second lunch, but I had 2 snacks and a scandishake! Take that body. Load up on them calories. Maybe I can start gaining some fat to these bones and look less like a freaky muscle builder when I brush my hair, and more like a well toned young lass.

Haven't missed a med in quite a few days. Extra motivation really helps. I'm also on some antibiotics over the next week and a half. I had been coughing up 'sick' tasting stuff and got on that asap. I'm starting to feel a bit better.

Perhaps if I were more motivated I could have found a topic for this post and really upped the writing skills. I was corrected yesterday at gymnastics for my 'poor english' haha. I said 'stretch out good!" instead of stretch out well... which I have to look up the usage again because I could have sworn good fit in that sentence. Eh, you win some, you lose some!

Sunday, April 15, 2012

Patience. What the heck is that?

In February I wrote 6 posts but never published them. I felt that I was in a place where I was feeling very ungrateful. I started writing these posts as a reflection of self, to really get out all that pent up frustration. Just out. I didn't need it justified. I didn't need to scream it from the mountain tops, I just needed to get all those emotions down in one place.
I reread them today and I like them. I think that even though I didn't share them there was something powerful about them. The foundation of what is today. Trying. This is where it began.

I've never been good at being patient. Kyle has so graciously changed my middle name from Anne to "I-want-it-now". I've have never been good at waiting. I get an idea in my head and well, I want it now. I need to do it now, work on it now, and if it takes more time than I anticipated, well, I give up. I decide it wasn't worth the effort and stop before its complete.

Examples of this are strewn across all aspects of my life. That second blog I created so I could post all my crafty projects and clever thinking schemes. Well, as you can see I didn't get too far with that. But when I had the idea, I had this grand scheme where I'd become this awesome craft blogger and get so many followers and it'd be such this great creative outlet for me. And now it's just some used up domain name in cyberspace. So sad.

Everytime I log into blogger and see that sad, lonely, disserted blog I get discouraged. I'm slapped in the face of all those times I was stricken by the "I-want-it-now" syndrome. All those wasted hours planning, dreaming, hoping I could make it work. Always knowing in the back of my head it wouldn't last.

But that's just it. I'm a planner. I like to plan. I like to meticulously plan. Life, however, is something that you just cannot plan. As much as you try to plan, things just don't go accordingly. Life has its own agenda. I just want it to follow mine for once.

I guess that's where I'm wrong. I should be trying to make life bend itself to one of my many "I-want-it-now" schemes, but rather molding myself to fit Life.

I'm at such an awkward point in my life. I look forward to my days off of work so I can get my list of onehundred and one things done, and then when it comes down to it, I end up youtubing cute kittens for 3 hours and decide the days a waste. No will power. No motivation. Then I tell myself it's unfair that I can't have what I really want, right now.

In reality, it's totally fair. I haven't shown the universe that I can handle what I want. I haven't worked for it. You don't get something for free. You just dont. Sure, I will commit to bettering my life for a day or two, perhaps even a week if I'm lucky, but then its the same old slippery slope back down to where I started.

At clinic I onced asked if they had any motivational tips to be compliant. All I got was "you just do it because its your life, and that's worth something, and if its meds that you need to do to keep it running smoothly, you just do it. there's nothing else to it"

It all sounds so easy so simple; hell it makes sense. When it comes down to it, it's just something I don't do. Why? IS there some part of me that thinks my life isin't worth it. Maybe I don't know where my life is going so there's no real reason to keep it moving . Why put fuel in the car if you're driving to an unknown destination? Believe me I'd fuel up on a regular basis and keep meticulous matenence of my car if you told me I was driving to Universal studios. But to just put me in a car and tell me to take care of it, spend money to fuel it up, keep it running smoothly to get to a mysterious destination... there's just not as much motivation. there's no light at the end of the tunnel. There's no finish line.

I have my own finish line in my head, but I don't even know if its the race is doable. And it would shatter my heart to a million pieces if I found out it wasn't doable. I don't want to take that risk, so I don't. I don't put forth the effort to run the race. A race I don't even know could exist. Some people would train just incase, to increase their chances, but I'm too afraid. Too afriad of the unkown. To fragile to face it and possibly be crushed by it. Ignorance is bliss. Yet my ignorance is unhealthy. I just want to be healthy.

Wednesday, April 11, 2012

Try, Try, and Try Again.

Kids are amazing. I have this strange love, borderline obsession, with kids. They fascinate me. I could watch kids all day and not get tired. I could read about kids, talk about kids, learn about kids day after day and I would always want more.

Something that I love about kids is their willingness to try. Whether it's trying something new, or trying something again, kids will undoubtedly try. Sure, sometimes it takes a gentle coax, or a nudge in the right direction. But for the most part kids have this relentless spirit of trying.

I see it everyday when I watch baby boy get back up from crawling when he's hit his belly, or try one more time to get that silly rice puff between his index finger and his thumb, and when it falls he doesn't even blink, he just finds it again and he's back at it. Finger to thumb, thumb to finger; puff in between. Eventually it will make its way to his mouth, but for now he's content with trying.

I think for this next month I will be trying. Trying to be better committed to my meds, and trying not to let silly slip-up's get to me. I'd like to try testing my limits by gearing up running a few times a week. And by running I of course mean walking and then taking some jogs in between those walking steps. Eventually I will feel more comfortable running for longer; and on those days that I just can't seem to stick with it, I want to push myself to try.

I don't want to be perfect over this next month, because no body can achieve that goal -- except for maybe Ronnie, I always read his blogs and just find myself thinking "Gosh darn it, why can't he ever not be perfect for once?" haha. But seriously, no one is perfect - including Ronnie -- and I don't want to set myself up with an unrealistic goal only to be disappointed when I fail. As long as I honestly try, then I'm already doing something better than I was before.

Monday, April 9, 2012

Here we go again.

I was doing awesome. I was 6 days into a 100% compliant schedule and I was feeling GREAT. I was rockin' my treatments and even remember that pesky MWF dose of azyithromycin.

And then it happened. I woke up on Saturday with an intense motivation for that day's planned activity: fixing up the porch! Or at least, the very early beginning steps. It wasn't until almost 8:30 that I realized what I had done. I missed my morning treatments! ALL of them! Pills, nebs, the whole kittencaboodle.

Instead of picking myself right back up, I let it get to me. I felt defeated and as I did my nighttime treatments I tried to stay positive but I could feel the insecurities and the guilt creep back in. By sunday the indifference had rolled around. I missed Sunday and Monday(today's) morning treatments.

All I have to say is enough. Just enough. I will pick myself back up, dust myself off and try again. I got 6 days down, let's shoot for 7. I may have missed this morning's doses but tomorrow is a new day, and I still have tonight, so you better believe I'll be adding in a few extra vesting minutes.

I'll get there. One of these days I'll get there.

Tuesday, April 3, 2012

On a Roll

It's about time. That time where you know you've been due a 'good day' because lately all you've had are lousy ones. Well, folks, I got my good day yesterday! And man, oh man, what a day.

I was able to finally get started on a few things on my ever growing 'to-do' list, but they were fun! Example: I got to go to Ikea and pick up a mirror, and lamp, and a bedside table we have been needing for a while. C'mon now, how can a day with a trip to Ikea be a lousy one? Well, it can't. And it wasn't!

Then, I was surprised by Kyle as he came home early. Which doesn't happen often enough if you ask me. Together we went off to the dog park where Oliver ran and played to his heart's content.

The cherry on top my friends, I have to say, was my adult gymnastics class. I signed up and did my first class hoping for something good. It was a blast. I had such a good time. I was already doing my handsprings and back tucks on the tumble track and it felt so good!

I went home after the hour class already sore! That's how you know you had a good workout. Surprisingly, I'm not that sore today.

All in all it was a great day; I felt great, had a great attitude, and even managed to get a great workout in (along with all my meds!!)

Here's hoping more great days are to come!
[For the record, today has started off pretty well but I don't want to jinx myself here. =) ]

Yesterday's Meds:
  • Tobi
  • Vest (30 mins)
  • Urso
  • Zithromax
  • advair
  • albuterol
  • Pulmozyme
  • Tobi
  • Vest (30)
  • Ursodiol
  • Vitamin D
  • M. Vitamin
  • Advair
100% (Plus an extra 30 vest from what I normally do)

Monday, April 2, 2012

One Day Down

When I was younger I used to count down to my birthday with the help of small candies. Skittles always happened to be my favorite candy for the job. I would line up around 10 skittles to mark the days before my birthday. Each morning I was allowed to eat one--to mark the passing days-- and I was left with a new skittle countdown.

For some reason as I strapped on my vest this morning, for the second day in a row, I thought about my skittle countdown. There were some years where my birthday was nothing but a regular old bad day. My 'sweet' sixteen stands out; dumped by a boyfriend, my 'big gift' from my mom was an electric tart burner so I wouldn't have candles in my room, and my best friend who found her semi dress at the mall that day while I found nothing. Yet, those ten days before I had my skittles laid out and I enjoyed an edible countdown.

I'm not sure why I used to do that. It took an awful lot of will power just to walk by those remaining skittles. But each day was that much sweeter (literally) when I got to wake up and eat that day's skittle. It was something to look forward to; to congratulate myself on making it one day closer to being a whole year older.

I don't think my motivation slump can be cured by skittles, but I do believe that I need to be celebrating each day for making it one day closer to being a whole year older. That's another morning I get to enjoy, another day I get to tell Kyle I love him. Another night where I get to enjoy the simple pleasure of a hot shower.

I want to be able to celebrate each passing day as a small victory. Just like passing those remaining skittles I know it's going to take some willpower. But it was the willpower that made the remaining skittles taste that much better.

This next section is just to hold me accountable. Ideally I'd like to work saline back into my routine.
Yesterday's Compliance:
  • vest (30 min)
  • tobi
  • urso
  • advair
  • albuterol
  • Pulmozyme
  • Tobi
  • Vest (40 min)
  • Urso
  • Advair
  • Vitamins
  • Protonix
  • Albuterol

Sunday, April 1, 2012

Taking charge

I decided to take a break from the blog (if you haven't noticed) because I felt like it was becoming one big whine-fest. Not the kind of fest I want to be a part of. Now, if it was a wine-fest then you could have possibly persuaded me to stay.

However, I was chatting with one of my lifelong friends and she convinced me we both need motivation. She'll be making a blog as long as I update mine. haha That girl.

I need a major motivation overhaul. I find that my life isn't as fun when I have zero motivation. I get pretty grumpy, snappy, and I feel ickier.

I took the first steps today. I woke up feeling very junky -- pretty similarly to yesterday -- and instead of doing my normal "Oh,man this day is going to suck because I know I'll get a fever" I decided to take charge. Not to think about it,but rather just do it. Just like you don't think about going to the bathroom, you just do it; so you'll feel better. Well, I got up ate some cereal and went straight to my vest where I'm now vesting and doing some nebulizers.

They say the first steps are always the hardest, so here's to my first baby steps! Here here!