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.

Here we go again...

Three weeks out of the hospital and I. am. sick.

I blame stress. And poison ivy. That's where it all started! I was feeling awesome. I left higher than my high of 74% I left at 75%!! Mmmhm. I was elated. Kyle and I went to the new house to have the floor guys refinish the floors, and since it's real dusty inside, we worked outside in the yard. We pulled up 5 lawn bags of vines. Apparently all of which were poison ivy.

Now, I had never been allergic before, even when rubbing a poison ivy leaf against my forearm (I was in middle school, so I hadn't developed logical reasoning yet, so cut me some slack!). Well, 2 days later kyle is COVERED. I still have my creamy pale white skin clear as could be. hehehe Remember, I'm not allergic?

Well, fast forward a few days later I notice something is stinging on my arm. Poison ivy. Well long story short I got a few small spots of poison ivy on my arms and my leg. Very small, they looked like pimples. Kyle's looked like some monster had taken over his arms and legs and he was being eaten alive, but that's a different story.

After a day or so with poison ivy I started having fevers. I chalked it up to the P.I. kick starting my defense system. Well fast forward a week and I am miserable. My P.I is gone but I have fevers, can't breathe, and must be coughing up a gallon of 'junk' a day! To make matters worse I'm in CF Care limbo.

I'm in a different state and all my papers have yet to make it through the jungle gym of the medical system at the new clinic. So I called my old clinic. MAKE ME BETTER. I got antibiotics and guess what? I'm still not better.

I blame stress. I don't handle stress and getting sick makes me stress even more. AND theres sooo much to do! Stress. Sick. Stress. Sick.

I'm making another phone call today. Hopefully this one will make me better. I am NOT going back to the hospital a measly 2.75 weeks after I just got out. Going to the hospital every month for 3 months? Not my idea of summer fun.

BUT I'm trying to be positive (not that you can tell... ) but I am. I know it's because of stress so I'm trying to relax and take it easy and get my mind off it by doing fun things (like shopping!) but even that is exhausting. But we're having beautiful weather here so that's a plus.

Sometimes I just don't know. Hopefully tomorrow will be better and that's all I can hope for.

That's a heavy word you've got!

A few weeks ago when kyle's family was down for graduation we all sat together and waited for over an hour for the kids to finally file in. While we were waiting his mother and I were chatting, or rather she was chatting I was more listening. She soooo wonderfully let me know that a Canadian 16 year old has cured CF and they're going to start human testing! Well, now, isn't that just peachy keen! (Can you sense the rolling of eyes here??)

Now, his mom is sort of an eccentric woman who means all the best, whom I do love to pieces, but sometimes she gets me. This was clearly one of those times. Cure, eh? That's a heavy word you've got there Momma O. Of course I politely 'oh! I haven't heard this, tell me more..." and in my head I was rolling my eyes.

Sitting here in the hospital with nothing else to do and at a bordem peak I looked up said 'boy' and said 'cure.' The take I get on all the vague info I could find is that he experimented with something very similar to vx 770 and vx809 both which help correct the flow of the chloride channels. He only had one experiment in living cells in a culture... his results were quite impressive in that the fact that his two combinations of drugs worked together so that the cell functioned normally.

Wait a minute, isn't that essentially what the new vertex drugs are doing? This is not a cure, it's a treatment. A damn good one, but a treatment nonetheless. It's a shame that the media failed the general public when they decided to use the word 'cure' in their featured stories. I'm disappointed that they underestimated the heaviness of the word and tossed it around like no big deal.

The boy who did all this discovery, is absolutely amazing. I really liked a lot of his interviews, he stressed that the importance of his research is NOT the drugs, but rather the groundwork that he laid for these specific molecule structures. There's someone who understands the realistic seriousness of the matter. And he's only 16! Never once did he say 'cure.'

It's annoying to see false statements of celebrities, disappointing to see embellished, over the top stories, but its downright criminal to break hearts and spread lies! So my advice to all you media folk out there; "cure" is a heavy word --use with caution.

Room 142

At 5:00 pm EST the Carnival Glory set sail to the bahamas. I've never been on a cruise before, this cruise is my first. Only, I didn't quite make it aboard. Instead I'm now hooked up to an IV pole because my body decided it was the perfect opportunity for my first ever case of hemoptysis at 3 am morning before my first ever cruise. Did I mention this cruise was a gift?

To say I am bummed is an understatement. I am bitter and filled with regret. As soon as that fateful mouthful of red, frothy, liquid poured from my teeth I immediately was trying to talk it down. When I hadn't heard back from the pulmonoligist on call for over an hour an a half I successful convinced myself it was no biggie. People bleed all the time.

But then he called, and said to come in. Come in come in. Like, sit here for a couple weeks while everyone is in the bahamas so you're alone by yourself come in.

I put my health first and I hate myself for it. I'd much rather be sick and sailing than be healthy and lonely. I'm on such a weird emotional roller coaster right now. I'll understand eventually I did make the right decision, but it doesn't help it suck any less.

I've taken 4 steps forward and now 3 and a half back. Does it ever get easier?