Monday, September 26, 2011


I am relying. I am sitting when I should be standing, walking when I should be running. Overall, I'm not relying on myself but rather something else. This has got to end. I don't know when it started but it needs to end soon; now.

I woke up this morning after a weekend of a mysteriously sore chest feeling like I was sick. Head stuffy, chest sore, cranky... and thought "No wonder I dreamt I was sick... I still am. Oh, they better find a way to fix this or I'll have a few choice things to say to them."

That's when I realized my doctors can only do so much, and they're trying! Which is more than I can say for myself these days. I'm getting by. I'm doing only what needs to be done to feel the immediate effect of it. It needs to end.

I need to put 110% percent into myself because no one else can. Other people can provide me tools to do so, but ultimately I have to make the choice for myself, to take the utmost care of myself that I can.

Now, don't get me wrong, I'm not throwing my meds out or skipping meals. I'm just not consistant enough. I used to be consistant with a capital 'C'. I started to pride myself on how consistant I was. I was never consistant as a kid but in January 2009 I started a journey of 'Me,' and that journey came with consistency. Today I am deciding that I want it back.

Sometimes I fall into the trap that consistency is a sacrifice. Well, I have to sacrifice 30 minutes of sleep so I can get up and do my vest. I have to sacrifice my time out so I can squeeze in a Cayston treatment at home. It is not a sacrifice if it's important, it is not a sacrifice is it is constant. It is a duty. It is the way it needs to be. A way of life, and with the consistency, a good life, a healthy life. My life.

However no one can make me consistant. I have to want it, to choose it, for my own. So today, here at this very early moment I am deciding I need to re-evaluate my commitment to myself and all those who love me and step it up. I'm through relying on antibiotics to make me feel better. I can feel better if I work hard enough, with the right tools and right now, that's what I'm challenging myself. Work harder, breathe easier....consistently.

Wednesday, September 14, 2011

Please pass the salt... and that gallon of butter.

So I have decided that I need to step it up a notch in the weight department. I think that if I can gain a few (ahem 8 or so) lbs -- or about 4 kilos, for those of us who know our weights better in kilos than pounds-- then I will be able to keep my bugs at bay a little better, for a little longer.
That being said seeing a nutritionist always has me pulling my hair out. For instance, yes I know I'm supposed to have extra butter on everything, but is that really the only advice you have for me?

Don't get me wrong, it's great advice, but sometimes it just makes me a little crazy. I started adding condensed sweetened milk to my regular milk and my tea because it has more calories than cream (per tbsp) and well, doesn't make everything taste like cream. My nutritionist saw this and suggest I try cream instead. *roll eyes* I politely informed her I would be cutting my calories if I did that since the C.S.M has 130 calories per tbsp and 3 grams of fat where cream has about 50...and tastes like cream. bleh. (I would probably just eat the C.S.M out of the can if 'the boy' didn't gag every time I tried)

Another let-me-bash-you-over-the-head-with-this-for-the-hundredth-time item is all those famous 'calorie booster' supplements. Oh you know the ones. Scandishakes, boost, carnation instant breakfast.... and while these are great, there are really only so many milkshakes I can handle a day. Nay, a week. But I desperately need those extra calories. Such a predicament.

It doesn't make sense that I, as the patient, have to do my own research. I love the CF forum because all the patients combine all their hard research in one place. But that isn't our job, it should be the nutritionists', the pulmonologists ', the social workers' jobs'. Yet time after time, it is I, or the patient down the hall, who brings a new life changing discovery to the doctors attention.

Scouring the CF forum for information on the poorly neglected Nutrition section, I found a startling discovery in a lonely post. A mom had found something from Nestle called Benecalorie. A ton of calories, protein, and fat jam-packed into 1.5 oz. Yes, that's right 1.5 oz! Say what? You mean I don't have to chug half a gallon of milk with about 8 oz of white scandishake powder?? The best part? It's pretty comparable to scandishakes in terms of calories, protein, and fat.

Scandishakes (the powder alone-- it needs to be mixed with 8 -10 oz of milk) has 440 calories, 21 grams of fat, and honestly I have no clue about the protein. Benecalorie (remember 1.5 oz) has 330 calories, 33 grams of fat, and 7 grams of protein. Oh yes oh yes oh yes. Finding this out was better than getting my ears pierced! ...well, not the best choice of example seeing as the first time they got infected and had to close up and then hurt like the dickens to get them repierced... BUT finding out that I was allowed, now that was exciting. This beats it, hands down.

The reason the amount is so important is because of a little something I like to call "I'm sick and the last thing I want to do is shove a stick of butter down my throat" syndrome. Personally, when I'm sick the sight of food, and perhaps even the thought of food, is enough to make my stomach churn. I get this film in my mouth where anything I eat takes about 33 minutes to chew and another 10 to actually swallow. Food is the enemy when I'm sick. Fluids? Fluids I can handle. Milk, my dear old friend, is left in the fridge and I prefer my juice, lemonades and gatorades. Anything clear that will wash out that film verses add to it (ahem milk, you're the worst for this!). So with this "I.S.A.T.L.T.I.W.T.D.I.S.A.S.O.B.D.M.T" syndrome (I shortened it into an acronym for us haha) I tend to not eat (a lot , sometimes not at all unless forced) and drink milk. Well there go my scandishakes, and pretty much all calorie dense drinks... and please, whatever you do, don't try to tell the Boost Juice isn't that bad, the puke on the floor tells me otherwise. =) Luckily this little container of heaven (it comes in this little almost dipping sauce type container) can be mixed into juice... It's not particularly pretty, but it mixes well enough. There is a consistency change, but its no where near as thick as any other calorie boost drink (when mixed with juice; it looks like runny yogurt on its own). The best part? I can 'chug' it in one big swig and I'm done. I don't feel full, I don't have a gross taste in my mouth, and while drinking it it tastes similar to a yogurt drink. For me it was grape yogurt (since I used grape juice).

I'm loving it. Granted I've only had 2 so far and they're expensive (not loving that) but how can you put a price on health?? I've decided I'm going to start taking 2-3 a day and order a few more cases. Hopefully I can put on some weight and turn that fat into muscle by beginning to exercise again.

For now I'm leaving the sticks of butter behind and packing on some weight with benecalorie. Lets hope the next time I hop on the scale it doesn't read 48 kg (and that's with my shoes!) but rather 51 or 52!!

*Disclaimer: this post was written by me, for me, with no affiliations to any company including Nestle. All thoughts and comments were my own.