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!