Oliver

Today I was busy. Today I walked for over an hour. Today I played endless amounts of catch. Today we got a dog!

We had been thinking about getting a dog and we decided we needed a puppy so TK, the cat, could swing at him a few times and show it who's boss but TK passed away unexpectantly 2 weeks ago. Although the event was sad, she showed no signs of pain or even illness and we just assume she was an older kitty.

The silver lining of the kitty getting her angel wings, is that we no longer had to worry about getting a dog small enough to take a Cat beating. Enter the search. Craigslist, SPCA, Pounds, Animal welfare shelters, etc. and the occasional scope on Petfinder.com.

We decided on a general breed. Something medium to large sized. Preferably a shepherd mix. Well after considering two dogs who just didn't quite feel right, we decided to look last minute at the SPCA. And there was Oliver! This cute, floppy eared boy just chomping away on a bone, wagging his tail. He was less than a year old, and he was a german shepherd/Lab mix. Cute as a button (not that it matters because all dogs are cute!). He was soooooo lovable. So friendly, and climbed right up into kyle's lap (as best he could outside). haha.

We filled out an application with the idea that we could always so no the next day if it wasn't the right time. We went home and discussed it and we decided that he was the one!

Oh man. We brought him home today and he is one smart boy! He did live with a family who had him for 5 months who surrendered him for 'not having enough time' so he knows "sit" he may have been learning 'down' because he mastered it after 3 or 4 treats. Either that or he's super smart! (I personally believe the latter).

He seems like a wonderful companion and is truly a sweetheart. He didn't even pick up anything that didn't belong to him. He only put his 3 toys in his mouth; I mean we had sneakers out and the recycling was overflowing... but he only played with his tennisball and 2 rope toys. Although he does like to eat rocks and sticks outside. hmmm. He never jumped on any of the furniture and kept all paws on the ground ( 90 % of the time).

He's still a little excited around the weasels and thinks they are bigger than they are. He also seems to be a nibbler. He'll definitely catch on to training quick and he seems so eager to please. I'm also eager to teach him how to walk on a leash properly so we can go jogging together!

I took him for such a long walk today and it felt amazing! I thought I was only gone for 20 minutes and turns out I was gone for an hour and twenty minutes! I think he's just the motivation and companion I need at this point in my life.

Welcome to the family Oliver! We love you already you goof.

Just call me Ratatouille

I like to plan. A lot. Too much, even. So when I optimistically prepare a weekly menu, usually only about half to 1/3 of the things actually get made. That's why this week, when I was able to make everything on the weekly menu I thought I would share!

I decided that when I usually make menu's I have too many complicated recipes. This leads to the problem of time and energy. If I'm low on energy I scratch the complex dinner, and well, if I'm short on time... it's pasta for dinner and I don't even bother to throw a second glance at the menu. This time I think I had the right combination of easy and hard recipes in both energy and time demands. (Granted, this is tailored to what I consider easy and what I consider hard).

20-30 minutes:

Orange Pork: I fry pork cubes in some sesame oil and then add soy sauce, orange juice, brown sugar, ginger, and garlic. YUM!

Rice Noodles

Green beans

1 Hour:

Turkey Lasagna (1/2 lb of ground turkey)

Green Peppers

French Bread (I actually forgot the french bread but the lasagna was so filling it didn't matter!)

15 minutes:

Turkey Burgers on Ciabatta Bread (remaining 1/2lb of ground turkey)

Potato Chips

Carrot Sticks

Pickle

30 minutes prep (3.5 hours on 'high' setting on the crock pot)

Beef stew - in the crock pot -- so easy!

Biscuits

30-40 minutes:

Homemade Pizza

Celery sticks

milkshakes

While I was chopping and preparing everything for the beef stew last night I also chopped some extra potatoes and boiled them along with 2 eggs and made some potato salad! Added bonus? It only took an additional 10 minutes!! woohoo.

Recently I've been buying meats in bulk. Pork chops, pork tenderloin, and chicken breast can all be found in my freezer. When I buy a big bulk of chicken breast, for example, I'll trim off all the fat on each breast, slice it thin (that's how we like to eat it) and baggie 2 portions. That way when it comes time for dinner I just grab a baggie, pop it in the microwave for a minute of defrosting and it's ready to cook. It's become so nice to just know that we can cook up some chicken or pork at any minute's notice. It's really made a difference in making dinners... and snacks.

Any kitchen tricks you use all the time that you couldn't imagine not living without?

Relying

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.

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.

All that is well in the land of Oz

So clearly the title of this post will have nothing to do with my post. I just wanted a title and didn't feel like sitting here for five minutes thinking of something.

Recently after realizing I have a clot the size of Africa in my left arm, I was put on enoxoprin injections which are just a blood thinner a tad heftier than heprin. Orginially I was supposed to be on 5 days of injections and then remain on Coumadin- an oral blood thinner.

The first day I recieve these injections from the pharmacy I was upset to say the least. They are NOT similar to an insulin syringe dear nurse, not even close. I sat at my kitchen table looking at this needle I was supposed to jab into my fatty areas... only to realize I have close to no fat on my body.

I worked myself up into a mental breakdown over this one dauntingly simple task. So much so that I had to call my sister to walk me through it. Voicemail. I didn't want to talk to my Dad or he'd insist on coming down that moment to A. give my doctors a piece of his mind and B. wait on me hand and foot ... so I called my mom. The day before her wedding, while she was getting a pedicure. Sobbing.

I finally just jabbed a pinch of my butt (one of the ONLY places I still have a bit of fattiness) and when it was in I thought the hardest part was over. Little did I know that blood thinners are like 1,000 tiny knives carving out everything in their path under your skin. YIKES! And of course being the medical pro I am I never bothered to read FULLY the instructions (so unlike me) and if I did I must have blacked out because I rubbed that sucker down! I rubbed my butt till my hand hurt hoping it'd ease the pain.

Well, lesson learned. That is the biggest no-no is blood thinners history. Duh. Its a blood thinner, rubbing it makes you bleed! I ended up with this massive LUMP and the grossest bruise that still hurts 8 days later.

And each time my injection time came around (2x day) I broke into a mini mental breakdown. How was I willingly going to inflict pain upon myself every 12 hours?! I finally made it to Tuesday lucky day 5 of my treatment and call the doctors to make sure I was able to stop.

Turns out I have to be on them for 11 more days. Each time they get easier, until that one time I flake out and then the fear creeps up again. I know stabbing the needle into my flesh FAST will be painless but something about quickly moving a needle willingly to my own body freaks me out and I just can't do it. STILL. So I go slow and steady and painfully push it past my dragon hide( I swear skin shouldn't be this tough to break!). Each time I successfully inject myself I promise myself a goodie. "Oh you can definitely go buy that wicker basket now" "You should go get a redbull in celebration!" "This shot was totally worth a puppy"

But I never follow through because I know that like it or not, I'm doing it to keep myself healthy. It may not make me happy now, but when I'm still here 10-15- nay 40 years from now I'll be thankful I didn't throw the towel in and let a clot ruin my chance of having an amazing life.

Enoxaprin, you may sting and bruise, and make me limp all you want but I will keep scrunching up my face, keep hyperventilating, keep cursing you under my breath--or outloud-- and eventually I will show you who's boss. As for you CF, I start work soon so you KNOW I'll be kickin' your butt if you try to get ugly on me. Don't you forget that I have 30 more syringes and I'm *almost* not afraid to use them!

PS this post is way too long for such a simple story but really I don't feel like going back to make it shorter.

Loathe and Love

I Love:

the fact that I was responsible and sent myself to the hospital to get better before getting worse!

I Loathe:

it was to date the second worst hospital experience ever!

I Love:

that they let me go home with home IV's through a picc line after a week.

I Loathe:

I was only home for 3 days before my Picc had to be pulled because I have a blood clot from my elbow to my boob. ugh

I Love:

Getting sedation for my picc lines down in IR

I Loathe:

Not knowing who the idiot was who put my picc in due to being heavily sedated. I'd have a few choice words for him now.

---------------------------------------------

These past two weeks have been challenging to say the least. I have a blood clot the size of Florida and they let it sit for 3 days while it grew to the size of California! I'm finally being treated for it but only after being installed with fear with all the "But if you notice x y or z go to the ER immediately." (I may or may not have already experience X but didn't think much of it because sometimes it happens normally when I cough)

Well CF you've done it again. Thanks for making my life a bit more complex on an already complex weekend! (My mom is getting remarried and I have to drive 9 hours up tonight for the wedding tomorrow and 9 hours back the next day. With a blood clot the size of california. Fun.) -- the kicker was her response after hearing about the growing clot "Well, I know you probably want to go into the hospital and get better but I really appreciate you coming up instead!!"

ugh.

Delight/Despise

I Delight in:

The fact that I am getting a dryer today and can finally wash my clothes!

I Despise:

The fact that said dryer had to be taken back to the store because it couldn't fit in any doorway.

I Delight in:

the beautiful lightening, thunder, and rain storm last night

I Despise:

the rain made the back porch steps a slip and slide and I didn't even manage one step down before falling the rest of the way spraining my wrist.

I Delight in:

After falling down the stairs knowing I can have my last saved redbull as a cheer-me-up

I Despise:

Throwing up my last saved redbull as a not so cheer-me-up but rather a cough-me-up.

Oh life. You sure are a funny one today.

P.S If you ever think there is a slight chance of throwing up in the future it's probably not a good idea to eat half a jar of olives. Just sayin'.

I actually laughed to myself as I wrote these because at the time they didn't seem that funny but now looking back I'm having a good chuckle.