My Roaring Twenties

Oliver

2011-11-06T21:41:00.002-05:00

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

2011-10-28T13:22:00.002-04:00

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

2011-09-26T06:59:00.002-04:00

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.

2011-09-14T10:36:00.001-04:00

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

2011-08-26T11:37:00.003-04:00

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

2011-08-19T11:39:00.004-04:00

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

2011-07-03T10:24:00.003-04:00

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...

2011-07-01T12:27:00.002-04:00

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!

2011-05-30T20:28:00.002-04:00

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

2011-05-29T18:46:00.003-04:00

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?

Even Soda Doesn't Cut it Anymore

2011-02-25T12:23:00.004-05:00

I'm having an off day. Lately I've been having more Off than On days. But that's just the way it goes. Unfortunately my "off" days are actually the days I'm off of work. Goooo figure. Although this week I had an off day at work.

I have a list of things I'd love to do right now and I can't seem to find any motivation what so ever. I decided to give myself some time to just 'chill' and feel lousy for a bit and then start anew. I also decided to look up some blogs to see if anyone had any inspirational, quick fix it to get out of mopey land when you're feeling icky but you want to do so much?

Lately I've been backing myself into this corner. My list of things to do has sat unaccomplished for quite a while because I've convinced myself if I can't do it all then I'm sick. And who wants to be sick? And if I CAN do it all, well then, that's just pure laziness, and who in all honesty is proud of being lazy? So I've got two outcomes (in my mind at least) and both are negative. See how this is bad?

I know there's not a quick fix it, although I keep trying to convince my body that coke always dose the trick. I usually can get by feeling less congested after a good cup of soda, particually coke. Those bubbles? Clear out my throat & mouth like nothing else! Move aside toothbrush you're being replaced. The always reliable sugar rush & energy boost is always welcomed and the taste, well if you offered me pepsi I'd laugh. Maybe my body's not fooled that I got caffeine free this time. hmm.... But I wish there were some good old reliable 'tools' - if you will- to call upon when I need a pick me up, that don't leave me dashing to the nearest convient store.

I know keeping busy helps me forget that I'm feeling icky. But I also don't want to run myself down and lead to the most inconvenient hospitalization either. I've been doing so well balancing working, and thinking positive that this is a major road block for me. I know I have some power over this, but it's just so much easier to give up and cuddle in bed and waste the day. Yet, that feeling that lingers after a day such as the one just described, makes me feel even more miserable.

What's the magic balance here people? Where does it lie? How do you know you're doing 'enough' without over doing it? Or when do you know you need to back off. People say "you know you're body best" , but they don't account for all the mind tricks. I can't seem to sync up my mind with my body no matter how much soda I drink. And all these little cracks seeping into my noggin with this gloominess has reminded it of all those "what if's" I used to dwell on. I hate what if's. They do no one any good. Yet they've taken up residence and I'm having a very hard time evicting them.

I keep telling myself, counting down the days till the hospital. I know I should just go in, but I don't want to put life on hold. Not right now. I can make it. I know I can. My numbers are still where they were almost 8 months ago! It's the moodiness that is cluing me in on the much needed tune-up. I told myself I'd put my health first this year, and here I am knowing fully and allowing willingly to put it on the back burner for a few weeks for someone else.

So when does it end and how do we balance it? This will not be the last time I feel like this but in the future when it returns I want to know how to combat it. Kick it's unwelcome tushy out the door and live my life. Not live CF.

Life lesson

2011-02-15T07:16:00.001-05:00

seriously google? I hate auto refresh. I just lost a blog entry somewhere deep in space. Oh well maybe it was for the best, I was basically complaining. Who likes that?

Life lessoned learned, courtesy of google.

Not Lately

2011-01-11T22:25:00.002-05:00

I'm just not into it lately. I sit down to write and I stare at this blank white space and get lost. Cue distraction. My idea of brainstorming is reading other blogs followed by similar versions of this:

"Oh, I wish I would just get up early and bake like that"

"She writes such awesome posts, and they're not novels... Why are my posts so long, and incoherent"

"I used to be an average writer...." (So maybe average is a stretch. In my school I think I was above par, if you could look past my grammar and spelling. I had nice ideas and could convey them smoothly. Not so much these days. Not so much.)

"Her blog always leaves me feeling inadequate... I should go clean."

But Why? I sit down to write and I feel intimidated. I shouldn't feel inadequate. Ever. And yet when I come to this blank space I feel just that; inadequate. My fingers struggle to type and the words just aren't forming. No one's going to tell me I'm wrong or give me a grade, and yet I sit here struggling.

There have been so many time I've sat down with the intent to write and I've done nothing but stare at this page and reflect. I have so many stories and thoughts that I'm sure I could spin beautifully growing the wonderful web that is my life... but don't you see? It sounds forced. It sounds cheesy. Although, it would suit me-- I tend to be a cheesy person in real life.

(I once corrected my aunt when

she called me "a ham."

"No, no no! I'm not a ham...

*cue dramatic voice*

... I'm a GA-LAZED ham"

Been there. Done that. )

As of right now I'l just keep staring at this blank space hoping for inspiration to strike. Or maybe I'll bookmark a thesaurus and boost my vocabulary confidence, and perhaps words will come a little easier. But for now? Bed sounds best.

Just Some Time to Spare

2011-01-06T05:56:00.002-05:00

Yesterday I accidentally napped from 5:30-6:15. I was laying on the couch with a blanket and pillow over my face due to a sudden migraine. I ate a bit of dinner, not much due to the naseau the migraine produced, and went to lay down in bed where it was a bit darker.

Well, I accidentally napped again until 9:15. Upon awaking my migraine had gone and I was feeling fine except for the drowsiness of just waking up. I had some water and went back to bed. For good. I slept until 4 am. Ah. Glorious.

I have to be at work an hour early so 4 am works out nicely. I was able to shower, and make corn bread. Have a great breakfast. Do some extra vest. AND wash the dishes. Best part of the day so far? Waking up at 4 am feeling refreshed and not dreading the day. It's always so much nicer to wake up without an alarming blaring at you.

All in all my migraine yesterday that I was cursing was really just a blessing in disguise. I'm all caught up on sleep and I had the time to be productive this morning. It's a win win!

Sing your mucus out?

2010-12-16T07:04:00.000-05:00

So my title was going to be sing your heart out but I really sang out more mucus than heart so i changed it. I picked kyle up yesterday for a last minute shopping and when I had to return him to his car at school I swung by the music hall and played with the grand pianos. Yum.

I went in with the intent to only stay for a few minutes. Um, okay. Reality check. And a clock check please, you said it's what time?! I ended up being there for over 2 hours! Just playing and singing my heart out. And man, I was struggling at some songs. It's funny because I just add extra breathing where I need to, but lately I've been misjudging. Example: "Oh, I can sing this whole phrase in one gulp of air, no problem..." except problem I could only get 2/3 the way through and then my voice would fade out and I would do one of those GASPs for air. Like you were underwater for just a few more seconds than made you comfortable. The kind where you are feverishly kicking your legs praying you break the surface of the water soon! Yup, that kind of gasp.

Fast foward a few hours. I felt like I had run a marathon. I felt like I had moved SO much more than when I ran the 3 miles. Oh yea, I ran 3 miles the other day. woohoo go me. But moving on... I was so rattly and junking and just overflowing with the good green stuff. So much so that I had to take a cup to bed with me so I could have something to spit into it was just too much to handle.

But I huffed a bit and got a lot up, enough to sleep comfortably without coughing out & up a lung every 3 minutes.

Side note: Today is going to be such a long busy busy day. And it's snowing. OYE. I'm all for snow in Virginia but seriously, the day we have to make a 600 mile trip?? really? I am up early because I'm needed at work early. I haven't packed a thing and it's supposed to snow. great. great. great. Oh yea, we haven't really cleaned up much too. And I want to do that before we leave. So here's the plan:

Work till 4 Get home at 5ish because no doubt it will take an hour to go the 5 miles home because people don't know how to drive when a few flakes of the snowy stuff fall down. Well, that and there are no plows. Mostly the no plow part.

Pack up. While kyle loads the car with goodies I should clean up. And... okay so writing it out makes it seem much more manageable. Hm. go figure. See bog, see how good you are to me. Alrighty.

Hope everyone has a wonderful thursday and a nice holiday.

But we've got love to pay the bills.

2010-12-06T21:06:00.002-05:00

Every year I write down some of my goals for the upcoming year. I hate to admit but every year "Keep my room clean" was on the list. The reason why it had to be on the list every year? I never successfully achieved this goal... ever. This year I decided to let that one lie for good. So what if my rooms a little messy now and then? Sometimes life is messy and I like it like that.

It's funny how in just a short year some things change drastically and somethings take years to change, and somethings never get a chance to change. I'm always surprised how quickly time goes by, especially on the weekends, -I swear it was just friday right? Why am I back at work already?!"-- familiar, no? However this year, looking back it seems so long ago that I packed that fateful bag to head to clinic knowing that I was going to be admited. Wanting to be admited. Allowing and agreeing that I needed to be admitted. January was a huge stepping stone and a great way to start off the year. It set an amazing tone. I started off the year with a decision to change. So change I did.

It wasn't overnight, goodness no. It also wasn't easy. I've had lots of setbacks and lots of upsets, but more importantly, lots of victories. Those victories outweigh any doubt in my mind that I couldn't do this. And believe me, there were so many doubts. The best part? This is only the beginning.

I look forward to pushing myself, encouraging myself, and most importantly loving myself. Even those flaws that I'm trying to change. Until I can fade them out I will embrace them. When I reflect on even just a few years ago I'm amazed at how much I would 'hide' myself to fit in or be accepted by who I thought was 'cool.' If only "my friends" could see me now. Yea, I buy my underwear in packages... what of it? Do you know how comfortable they are?

I'm over being someone for someone else. I am being ME for me. And that's that. I look forward of another year of myself - to be honest. Although there are times I catch myself slipping back into that "Oh she's looking at my ugly shoes!" or "All these people driving by in their cars are judging how SLOW I am running" and I have a new solution for that: stop being so conceded. Gosh, no one cares what shoes you're wearing, and if they do care, they are NOT someone you want to be friends with. I'm embarrassed that I used to be so full of myself that I thought everyone everywhere was looking and judging me. Get over yourself.

Unfortunately I think a lot of people are caught in this way of thinking (I was included) and its unfortunate. Everyones so afraid to be who they are, and who they want to be because it doesn't fit what society says they should be. 2011 will be a year of individuality for me. . . I'm going to rock my Kmart sweater and my thrift store skirt with pride. And you bet your buns that mine will be covered by 5$-I-came-in-a-package-of-twenty-and-cover-past-your-belly-button (well maybe not quite the belly button part...)

There used to be days where I would obsess about how other people live their lives. Through blogs obviously. I used to compare what I had to what they had. Well let me tell you, I drove myself crazy doing that. What I have is just as amazing, different, but amazing. And if it takes me a little longer by encouraging myself and reminding myself that, then so be it. But I will continue to learn to love my life -- the beautiful and the damned.

My life with all the medicine, kyle perfected saturday pancakes, laundry, hospital stays, cuddle sessions watching big bang theory, nebulizers, raspberry hot chocolate, warm showers, pills, yummy food, wonderful family and love. Lots and lots of love. I don't say I love you enough to people in my family.

In 2011 I hope to show my love more. Phone call here, letter there, postcard? Everyone loves to feel loved, and even though I know they know it, it's always nice to be reminded of it. And sometimes you don't realize how much you miss them till after you've talked to them and then you feel great all day. (or at least I do! I love my skype sessions with family!!)

Overall 2010 will hold a dear place in my heart. It has been a year of challenges and accomplishments and I have learned a lot about myself. I grew a lot as a person this year and I'm excited to continue to learn and grow throughout the new year. And maybe I can 'try' to keep my room clean... but no promises.

2010-11-15T06:25:00.002-05:00

I have such a long week ahead of me. I need to be at work for 7 am. Normally this would be a hassle, but do-able. This week I have D. all week. He's right inbetween the ages of Thing 1 and Thing 2. 18 or so months. When he's there, my day is HARD. My day is LONG. I come home stressed and miserable.

But after this week, and the lovely paycheck I'm planning on getting, I am going to be serious and tell them I can no longer watch D with the girls. Its just too much. I need to look out for myself and the girls, and basically it just doesn't work when he's there. Naptime is SO horrendous. (Last time the girls only slept for 40 minutes....when usually it's 2 - 2.5 hours) And D. has some issues with hitting/kicking & basically just being a toddler boy. =\

So All this week I'll be getting up before the sun, at a lovely 5 am so that I can do the responsible thing and take care of myself. I can eat, do my vest and do my meds. Speaking of which, it's so early I forgot to do my inhaled meds. They've been staring at me, and now I'll be late. Oh, it's already one of those days.

Dappling in Photoshop.

2010-10-29T12:41:00.003-04:00

What to do when you feel slightly run down and have to spend saturday all by your lonesome? Dabble in photoshop of course. Kyle had bought me a tablet after explaining my undying love of the idea of having a tablet. I would use it obsessively! (right??)

After months of sticking to my treatments and really stepping it up in the Health Department, Kyle surprised me with an "I'm proud of you"- tablet. Needless to say I barely knew how to open photoshop let alone edit pictures with it.

This past saturday while he was adventuring off on his Kayaking final, I buckled down, watch some tutorials and dived head first into photoshop. (only CS3 or something like that, not full blown photoshop).

The best way to learn? Take the most hideous picture you can find, preferably when you're fevered and have just woken up... and try to make yourself look half human. Oh and then, give yourself a cool haircut.

Now if only photoshop could be applied to real life, I'd look like a creepy baby doll, and that's every girls dream.

How long till your surrender?

2010-10-21T21:53:00.002-04:00

I got close to your skin while you were sleeping

I taste the salt on your hands

I reached out to touch you

the morning light disarms you

Won't you let me in?

Oh, how long till your surrender

So that previous post was sooooo annoying. Whiney Whiney Whiney. Blah blah blah. Geesh. But I do have a story to go behind it. (Notice I didn't say excuse, but just rather story?)

Rewind to last Friday:

Cal drives up from Duke to visit Kyle and I in little old Williamsburg for the long Columbus Day weekend and all is well and dandy. We have some fun, we eat, we drink, we went bowling! Well, on Sunday I woke up a little stiff -- no big deal, it could be much worse. Pop some NSAIDs and go on my merry way. End of the day? I'm still a little stiffer than I'd like and a little sore. Whateves. (Ew did I seriously say whateves?)

Monday: Okay today I'm a little more sore, my thumb on my right hand is actually pretty painful. I can move/use my other hand perfectly fine so again, its not that big of a deal. I take T3 and go back to bed for a bit. Fast foward: I wake up and now a few more joints hurt. Just the usual:

Wrist
Hand
Fingers
Knees
Ankles
Toes

That's a pretty long list looking at it, but it's actually the usual. It's all the small joints oh, and elbows too! Well, we have a low-key day and I'm debating whether or not to go on the 'ghost tour' around CW (Colonial Williamsburg). because I'm not sure how well the joints will feel in a few hours, but I decide with some persuasion that I can 'walk it off' on the tour. Eh, seemed good at the time. So we head out.

Tour was boring, our guide was terrible. Kyle was mad, she would stop at a place that had 3 ghost stories and she actually said once "This place is haunted, I know because I've seen it" and walked on, ignoring the 3 stories that she was supposed to tell. *Smacks head* Grr.

We get back to the apartment a little before 10 and by now my hip and shoulder have joined the achy joint club. I have work in the morning so I'm a little nervous about the new additions because how am I supposed to swing around 2 babies if my hip and shoulder are bummin out? Eh, again popin' Ibuprofen and offf to bed while the boys dominate Super Mario for Wii (seriously fun game). As I'm laying in bed I can't get comfortable. Within 40 minutes, I'm really hurting. In fact I hurt so much that I think I'm going to cry (but I feel very uncomfortable crying with Cal 20 feet away ) so I do one of those big slow breathes in, the kind you take where you're about to cry but want to stop?

Well, that did it. Let the water works flow! Add spine to the list of achy joints. (Can your spine even get arthritis??) At this point in time it's almost 11 (an hour of agony has gone by) and now it hurts to breathe in. Well, this is dandy. I also can't put pressure on my right shoulder or move my elbow. Uh-Oh. Cue: Kyle's enterance.

"Hey babe, you doing' alright?"

*gurgle* (I don't think I could actually respond without pain)

"What can I do for you, what do you need, how can I help" This was more of muddled together one big mushy sentence.

I decided I couldn't lay down - it hurt my spine. so I tried to sit in the gaming chair we have because its basically this rocker. No go. I sat down and immediately said "I think I need to go to the ER now."

So the two boys packed up some stuff for me and off we went at midnight to the local ER. MISTAKE.Should of just trekked it up to Richmond where people know what CF IS! Grrr. Anywho, I wait and wait and wait, and 2 hours later someone sees me. They take some blood they give me fluids, and they give me some teeny tiny dose of morphine. Gee thanks doc! I couldn't even tell she gave it to me. (I thought it was the zophrane they also prescribed for the anticipated nausea that "EVERYONE" gets with morphine. *rolls eyes* ) the M didn't even take me down a notch on the pain scale. okay maybe it took it down by 0.3? But I'm only giving it that much because it made me sleepy enough to close my eyes ( I couldn't actually sleep I was in too much pain) which sucked because we were there for another 2.5 hours. They ran some tests and didn't find anything wrong - no shit, I'm just blowing up like a balloon for no reason! Thanks. and sent me home with T3 (or so they sayyyy).

GRRRR. Oh, another note, while in the ER I developed a RASH starting at my foot and going up my leg. I repeated told the nurse. No one came back to see me. I was discharged 2 hours later. Annoying.

I go home and the next few days I spend in and out of sleep. The times I as awake I was swollen to the point where I thought I might actually need to be drained (do they still do that??). My legs blew up to twice their size, I couldn't put any shoes on --including flip flops because the straps were now too narrow. I hurt to sit I hurt to stand I hurt to lay down. I was a mess. I kept calling my rheumatologist trying to get an emergency appointment. but the closest one I could get was 4 days away. Some emergence. geesh. by day 4 I started feeling a little better, I could wear the flip flops and use my right fingers. My left hand was utterly crippled. It actually still hurts. Anywhooo. The doctor did pretty much nothing. WAnted to send me home with IBUPROFEN. Seriously now? I made a fuss and got steroids.

Turns out I did have a high inflammation rate. Nothing else was wrong. No fever, no whacky blood count, no virus, no infection. Nada. Just puffed up like a ballon. A Very. Painful. Balloon. I have history of gout, and lupus in the family and the doctor says 'nah its probably just a little inflammation/ arthritis flare up.' Um... Hello, I'm 21 years old. That might be an acceptable answer for a 50 year old. But 21? REally? (I got a call today and the lady actually said "He can't explain your pain but he's going to say its because of the higher inflammation rate, so its some type of arthritis" )

This has happened 3 times in my life starting at age 15. I hope it does not happen again but I seriously doubt it will just disappear. I would really just like to know what the HECK is going on. I couldn't move for a week. Not. Normal.

Not even CF normal.

Just arthritis my ass.

And that is why I was grumpy last entry. PHEW.

The end.

Just that kind of week...

2010-10-17T15:41:00.002-04:00

Ever feel like screaming? I certainly do.

I'm sick of being sick

I'm sick of not knowing what lies ahead

I'm sick of feeling guilty

I'm sick of feeling sorry

I'm sick of hating other people

I'm sick of being indecisive

I'm sick of judging myself too hard

But mostly I'm sick of being sick

I'm tired of being tired

I'm tired of trying extra hard

I'm tired of pretending

I'm tired of being careful

I'm tired of being responsible

I'm tired of trying to care

But mostly I'm tired of being tired

I'm fed up with being fed up

I'm fed up with schedules

I'm fed up with no answers

I'm fed up with ignorance

I'm fed up with fighting

I'm fed up with numbers

I'm just plain old fed up

Does it ever end? Can you ever just 'accept it?' Is anyone ever content and how did they get there? Can I get there? I'm sick of being sick, and tired of being tired. I've been trying so hard and I feel defeated. I feel so unaccomplished with my life. I feel so useless. I'm lost in the shuffle.

I've lost my motivation. It was brightly colored and fun to be around. So if you find it hiding somewhere, would you kindly return it to me?

One of those days...

2010-10-05T05:59:00.002-04:00

Its just one of those days.

I wrote this huge blog on my igoogle home page. I knew it was a risk, but I didn't think it'd be that huge. And then what happens? Oh, a little auto-refresh as I'm finishing my last sentence. Everything was wiped out.

It's going to be one of those days.

Is it friday yet?

I need sleep.

Birthday Woes

2010-09-27T06:39:00.003-04:00

This is the birthday boy:How cute is he, right? We celebrated the 'dreaded 21st' by having a low key evening at home with Supermario for Wii and of course getting a little schwasty. The the schwasted part was mostly on kyle, being his birthday at all. I had a few sips of Gin & Tonic but other than that I was just drinking soda. Our friends who live in the same complex came over for a bit and overall we all had a nice time.

But that was Saturday night... let me back it up to saturday morning. And by morning I'm talking 2am. I was having this dream, and for me dreams are never pleseant. My dreams are everybody else's nightmare. Ugh, it gets really annoying. Anyway, I was having this dream that someone was making me stand on hot coals for some reason or another and I couldn't move my feet, and yet I really had to move my feet because, well, I was standing on coals and they were burning! Well, I was stressing out/freaking out so much in my dream that I woke myself up to find that indeed my feet were burning up. So I go to kick off the comfortor and stick them infront of the fan for a cool-off, but lo and behold! I couldn't move my feet.

Plan B: I tried to move my arm to manual move the comforter away from my feet with my hand... and what do you know? I can't move that either. So then, I figure out that not only is my arm and foot imobolized, but gosh darn-it my whole body can't move! At this point I'm getting flashbacks to the time my dad thought he was having a stroke and couldn't move his body, so he was carted off in an ambulance. I know I've got a serious case of arthritis going on and ibuprofen is needed asap. Well, I go to turn my head towards the sleeping birthday boy when I realize its not just my normal arthritis joints hurting, (knees feet fingers elbows wrists) but rather every single joint in my body including my left jaw joint. This made speaking difficult as well as swallowing.

I finally managed to make sound out of my throat and work my jaw to open slightly, just enough to mumble some words. "Ibuprofen, feet on fire, pain, please?" And now that I've slightly awoken CF kicks in with the need to cough. This is when I realize my spine joints are hurting. And there are a lot of joints in your spine. I couldn't breathe deep. This is the point I started to cry, and then I realized I can't cry because everything hurt too much to cry, so I quickly stopped sobbing and went for the silent tears option.

After assessing this situation a bit further it was decided, ibuprofen was not going to cut it, not even close. Bring out the illegal stash of codeine! Thanks to Ron and his Canada trip (you can buy Tyenol w/Codeine OTC in Canada. So jealous). Well, just my luck kyle couldn't find it. So I take the ibuprofen and my temperature because according to kyle I was "burning up." The least of my concerns when I'm laying in bed paralyzed.

After another 30 minutes of agonizing pain, I decided I had to get up to find this special tyenol, because I know I have it, especially for occasions like this. Kyle helps me sit up, first accomplishment, yay! Hobble out of bed, funny site --we would have been cracking up if I wasn't a 10 on the pain scale-- and finally I found the miracle in a bottle. It took a little bit to kick in, so for that time I sat right next to my medicine tower and waited. Finally, finally, it kicked in and I was able to start working my joints. I took an assessment of what hurt the most, check this list out!

Feet (my feet were killing me because they were so swollen and hot! lol)

Ankles

Knees

Right Hip

Spine?

Right shoulder

Right elbow

Left elbow

Wrists

Hands

Fingers

Neck?

Left jaw joint

Phew. That was a big list. Its bizarre because I've had episodes of arthritis like this before, but only ever in my knees/feet ankles wrists and maybe elbows. Never major 'big' joints, such as hips or you know, the spine? And my jaw?? Yea that one was weird.

Amidst all this crying, pain, and hobbling, I look over at kyle and go "Ohhhh, yes, happy birthday?" and we both kind of giggled. Oh the life with CF.

That's all.

My vest is done and it's time to get ready for work! (Which I will be starting SUPER early tomorrow as in 6am? Ew.)

Sleep.

2010-09-21T21:44:00.001-04:00

Who knew sleeping could be so divine? Oh, but when you sleep the best, you feel like you've hardly slept.

I hear my bed calling me, so that I can sleep and wake up tomorrow so I can repeat today. <>

Sweet dreams!
(haha and Gem you're already passed out probably because it's.... 2 am for you? almost 3 am. Just thought I'd throw that out there, because I'm obsessed with our time difference)

Here kitty kitty

2010-09-20T07:03:00.002-04:00

This is not a meaningful post, just a random one. (Actually when at all are any of my posts 'meaningful?')

I offically feel gross today. I went to bed with a bellyache and woke up a little more than an hour before my alarm goes off only with a much worse bellyache! To the loo asap. It stinks because I have to go to work today and goodness knows I hardly have time for regular bathroom trips, never mind trips every 5 minutes.

Just once, I'd like to have a normal feeling great, non-CF day. Actually, no, I wouldn't because if I had just one day without CF it'd be one too many and I'd become so depressed that I couldn't have days like that all the time. So I guess I'll just go with the flow.

Other news, we caught a stray cat. And by we I mean Kyle. And now said stray cat is in the bedroom. Freaky. We (and I say 'we' very loosely here) didn't htink this plan all the way through, which is why once 'we' caught the cat, it just kinda ended up in our bedroom? We're not going to keep the cat, even with all my whining "What good was it to catch her if we're not going to keep her??" so I'll let you all know how the story of Ms. Kitty turns out.

Oh, and he's named her: Scandi short for Scandishake.... really, kyle, really? You couldn't have thought of a better name than the gross calorie drink I have to drink... really now? C'mon.

Oh Tuesday

2010-09-14T07:04:00.001-04:00

Yesterday I was exhuasted! Granted, I didn't get much sleep the night before; maybe I fell asleep around 1am only to get up 5 hours later at 6. Grrr

But last night, Kyle and I were in bed by 9:30pm -- what old farts are we right?? And I was alseep no later than 10:15. So instead of getting 5 hours of sleep I got 8! woohoo. And I feel more more awake this morning.

Work is going well. Although, every morning at 6am I regret working. I can't imagine what I'll be thinking for that first week of October when I need to go to work an hour earlier! It's funny, I like work, but hate it at the same time.

I know the schedule is good for me, I just wish I could start the schedule at eh 7:30? That would be good. Or even 8. But I'd settle for 7 or 7:30. This 6am deal is just getting a little old.

My sister is doing absolutely amazing! She's already moved into the step-down unit, out of the ICU. This is 5 days here people, 5 days! She was off the vent in a mere 12 hours after surgery!! Can you believe that?? I certainly can't. She's up and walking around. And by walking I mean she's practically doing marathons already. Yesterday she walked for a mile, on 0.5 L of 02. Walking. Amazing. More amazing is that 0.5 L and she wasn't out of breathe! Even chatted the whole way. She is truly one amazing gal. I can't wait till I can go home and we can do things together. Haha I'm going to be the one now going "Hold on, let me catch my breath" and huffing and puffing away. lol

On other, less important, but hilarious news... Goose escaped yesterday! When I came home from work he snuck out the front door into the Apartment complex hallway, and even had a little adventure outside when someone opened the door to get upstairs!

Luckily, our nice neighbor recognized the furry rascal when she was coming home from work and scooped him up outside and knocked on our front door. Oh what a sight to see! Our poor neighbor holding this squirmy little ferret in her hands. The look on my face must have been priceless!

I am so thankful that she saw him and caught him. He was outside for 45 minutes!!! What the heck did you do Goosey for almost a whole hour?? I would have felt awful if we didn't notice, and then when we looked for him at night and couldn't find him. We'd eventually go to bed thinking 'he'll come out eventually' but then he never would have!! I would have felt terrible. So thank you thank you thank you! My lovely kind neighbor. And now I'll be a little more careful of coming in and out of the house. xD

That's it for now.

its a go! AGAIN but serioulsy this time...

2010-09-08T15:57:00.001-04:00

As I was waking up this morning, my sister informed me she got ANOTHER call, after being sent home a few hours prior.... so at 6am she was heading up to Boston to see if the 3rd pair of lungs in 3 days was the charm. And it was!

She has been in surgery doing the actual transplant since 130ish. I had such a GREAT feeling about this one. I wore my "I lung you" shirt for extra luck, and it seemed to work. 3 days 3 pairs of lungs, 3 is a lucky number I guess.

Now all we need are some more good thoughts for a speedy recovery.

I am simply overjoyed. She's getting a whole new chance to live again. here here!

It isn't a go?

2010-09-07T23:01:00.003-04:00

So the first set of lungs at 9:30 last night ended up being a no-go. (flashback to piper's 'damp run'? anyone?) Anyway, after wheeling her OUT of the OR with NO NEW LUNGS, a second pair rolls in? Say what?!

Well, theypushed surgery back till 10 am, and then ran all the tests overnight on the new lungs. I'll be damned. These lungs were no good. What are the chances that 2 lungs come in within 48 hours of each other, both were given the 'its good to go' and then decided against it?

I'm a little relieved. I want her to have the best lungs possible and if that means these weren't it, then they weren't it. She's doing well, she still has a lot of spirit left, a new boyfriend who cares about her, some awesome new weight! (so jealous about this one, it's been a long time since she weighed more than me!!) So back to waiting again.

Thanks everyone for your thoughts today.

It's a go!

2010-09-06T22:08:00.001-04:00

She was wheeled into the OR around 9:30 pm. I won't know anything until tomorrow morning, but I hope it goes smooth. I don't even know if I will be able to sleep. I can't believe this is really happening. Love you Julie Christine!

Thanks for keeping her and her donor family in your thoughts. I'm so thankful the donor family is letting my big sis get a second chance, if there ever was a person to deserve it, it's her!

Lungs for Julie...

2010-09-06T12:40:00.003-04:00

She just called me and I'm excited, nervous, and a little part of me's scared. She's getting lungs! They called her and told her they were for her. Same blood type, right size? She's number one on the list.... but she said they're high risk lungs, she just couldn't say no.

I hope these are truly her lungs which will let her live again! She wants to do so much, and I want to watch her do it. She'd love law school, she'd be so great at it! And traveling; she, Dad, and I planned on going to France. Plan, not planned, no past tense here.

And now I don't know what to do with my nervous energy. Its really just a waiting game. Wait, wait wait. And then wait some more. Please please please, keep my sister, dear Jpie, in your thoughts today that all goes well, and she has a speedy recovery. It would mean so much to me.

So Long Weekend

2010-08-30T06:51:00.002-04:00

Well, the weekend was WAY. TOO. SHORT! That's for sure. I cannot believe that it's monday already. Back to the hohum of things I guess. I'm a little jealous that kyle gets to sleep in. I'm also a little annoyed that if I didn't need an extra hour for meds then I would be getting more sleep. Because I'm just so tired. And little sleep is how I get run down.

Anyway, enough complaining because it doesn't make anything better. The weekend was really nice blue skies, sunny, but also HOT. In the mid-high 90's again. I better make sure I have lots of salty things today. We didn't do much this weekend. I cleaned the apt. while Kyle did homework. Fair enough trade. We got our engagement ring looked at to be resized and reset. Then on sunday night we had dinner with Will and Meg. Will is one of his friends from his freshman hall, and meg is his girlfriend. They moved into the complex the end of august before school started and its been nice finally having some people so close .=)

I can't wait till friday which is my therapy appointment day. 1 Hour is going to FLY BY. I haven't had therapy in quite a few weeks (3 maybe 4?) due to holidays for the clinic and what have you. Unfortunately even though its my day off I'll still be quite busy. I need to mail a couple of packages, bills, and letters. I have to reorder tobi (good grief through this awful mail order "specialty pharmacy" thanks to being bullied into it by insurance) but I have no idea when it should be delivered? I'm not home till 430. I leave at 7:30ish. And only have every other friday off. . . uh they can deliver on saturdays right? But then you run into the whole "sorry hon I can't leave because the FedEx guy isn't here yet..."

Bah. Complaining again. I just get so fed up with so many things. What it really is, is I'm anxious. I just want to be adjusted to this job already and want it to work out. And not get sick? throw that one in just for kicks. I also would like afternoon nap time to actually be that-- nap time. Not, Molly cries for 2 straight hours. Geesh.

Well with that said, my vest is over (noooooooo too soon I don't wanna get ready for work) and it's time to get dressed and ready to go. Wish me luck today that things go well. I need a good "easy" day to boost my confidence, then maybe I can get through the week. Is it bad that I'm already thinking about the next weekend???

Blah

2010-08-26T06:36:00.005-04:00

I'm already tired. I don't know if that's because we just got back from a vacation and I didn't have time to rest up, or if its because this going to bed at 10:30 to wake up at 6 isn't cutting it.

Its day 5 of the new job-- sigh. Day 5 and there's a little bit of dread. I really don't enjoy the fact that she works from home. I feel that the kids should never cry. That in of itself is stressful. Of course they're going to cry! Thing 2 is 2 years old and has never heard the word sharing in her life. That = major melt downs at this age, and if it's close to nap time? Forget it!

I just feel so self conscious and I'm second guessing everything I do. Every. Little. Thing. It's A. annoying, and B. stressful. Also, I'm not a fan of when she comes down for a "break" and messes me all up because of course the kids want to see mom, but that's a no-no because she's still at 'work'. *rolls eyes*

But I can't quit. I just can't do it. I'm sure in a month or so I'll be more adjusted, and I'll have some routines established with the girls. But for right now, I want to cry. But that just might be the sleep deprivation talking (yea yea I know I got 7 hours of sleep but my little tiny self needs 9-10 to really function tip top).

Ugh, here I am whining whining whining. There's a reason there were so many coincidences, and I refuse to just give up like usual. It's only been 5 days! I managed 3 months with my first horrible family. I can at least manage 3 with this one, and then at the 3 month mark, if I'm crying every day. Well then we'll re-evaluate.

And this concludes the whining, self-indulgent pity party. The end.

Compliance and Vacation

2010-08-25T06:40:00.002-04:00

I understand the concept of compliance. I'm pretty good with it at home, it does indeed, make me feel great. However, when those bags get packed and the meds are meticulously counted out per day (along with a day or two extra -- you never know), I lose it. I simply cannot be on vacation and be anywhere near compliant. It's a little ridiculous. I do believe that is part of the stress when 'vacationing' aka going home.

But not doing my meds adds even more stress, so that when I get home, I don't feel well and I'm down because I was doing so well before we left only to erase all my hard work of compliancy. Don't get me wrong, it's not like I don't TRY to be compliant. I try alright, I try. But somehow things just go undone. I also think its much harder to be compliant on vacation. You're having too much fun to just sit down for 45 minutes to vest. Especially if everyone around you is pulling you in 20 million directions.

that's the other thing about going home. I need to see aproximately 20 million people when I get there. Okay, people, I just drove for 12 stinkin' straight hours, so no I would not like to go out breakfast as soon as we roll up in the driveway. I want to crash on a bed and screw up my sleeping schedule.

Oh, sleep. That's a good one. My whole schedule is out the window. In a 4 day span I only got maybe 18 hours a sleep? This coming from the girl who like to get 10 hours a sleep a night. Grrrr. So everyone expects you to travel all over the place to come visit them. Hello! We're the ones coming up. You get off your lazy bum and come visit me, in my pajamas because I'll be napping the whole day I arrive.

Anywhoo. There are also people I simply do not have time to visit. Who make me visit them regardless. That really gets me. I'm now just complaining. I really only wanted to vent about how I cannot remember to sit down and do pulmozyme while in a different setting, and how amazingly frustrating that is.

My actual visit was nice, considering all the above mentioned nonsense. I didn't get to see one of my old high school friends which was such a bummer because I haven't seen him in literally 4 years and I miss him.

But now after driving 12 hours to arrive yesterday morning, then throwing off the sleep schedule once again by sleeping from 7am to noon, then 330-500 and back to bed by 1130... I'm up at 6 to get right back into the swing of things. I always need a vacation after a vacation. I need a break.

My sister could also use a break. She was escorted to childrens hospital via ambulance equipped with 1 MD 1 RN 2 EMT's. Oh yea, she got the special treatment. But what really threw me off was the part of the message that said "... they stabilized her, and now she's off to hasbro" ... excuse me did you just say they had to stabilize her?Oh dear, that is never good. Along side with throwing up until you pass out, that's never good too. What is good? She is officially double listed at Cleveland Clinic. Lets hope those lungs come soon.

Off to start the day my day with two pint sized trouble makers. At least today its just Thing 1 and Thing 2 and no 3rd child.

Oh the woes---

2010-08-19T07:02:00.002-04:00

Oh man. Really? Just my luck. My "first" day with the kids by myself, and what happens? One of them is sick. She threw up 3 times, diarrhea all day, and was the appitamie of fussy. She didn't want anything near her, on her, around her-- which is a problem seeing as there are two other kiddies. This was also another problem because all the toys were "her toys" and she did NOT want anyone but her touching them. They were touched, and it resulted in lots of crying and screaming.

Then everyone decided they did NOT want to nap today. So instead of taking their usual 2 hour nap... they decided to only sleep for 40-60 minutes. Greeeeeaaaat. Short nap = no time for me to eat lunch!! Or do anything! I spent that time cleaning up the disaster area known as the play areas. Oh, also the kitchen. But you can't forget sanitizing all the toys that were barfed on.

It can only get better from here right???? Goodness, I hope so because I refuse to let myself quit. But like everything else it takes time to get adjusted. Both for myself and the kiddies. I've decided to call them Thing 1 and Thing 2 because not only are they 1 year and 2 years old, but thing 2 LOVES anything Dr. Suess.

On another note, I have no idea how I'm going to make it all the way through today, tonight, tomorrow morning - without sleep. I need to figure out where I can nap today, I'm thinking 5-6 at least. Then packing when kyle gets home... its just there's so much to do, it's almost obnoxious.

There are really so many things we need to do/ people to see that I am dreading the tiredness of it all. Everyone is fine if they go a few days with little sleep. But tiring myself out all day with kids, then driving all night, but then having a commitment in the early afternoon of the morning we arrive... plus being on the go constantly. Phew. I'm tired just thinking about it. On the plus side, driving at night means I can drink energy drinks! Kyle found this brilliant Canadian brand that tastes identical to redbull, so much so that I want to look up both lists of ingredients. And the best part you ask? Well, the fact that its about 1/2 the price and twice the size is not bad.

Okay, the vest is almost up so I need to mentally plan out my last few things here. Contacts, grab the check off the table, put something to eat in my purse, find some type of shoe? Unload dishes, put dirty neb & dirty dish in washer... OYE durrrr Cayston! I knew I was forgetting something important. And then meds.

haha fun fact for today about yesterday, and then I'll leave you alone! At one point during the bloody murder screaming coming from Thing 2 I sat down and just prayed to god. I don't believe it one specific "god" or really any "god " for that matter but I figured if other people swear by it, it couldn't hurt. haha I must have looked so defeated sitting on the floor covered in drool, dried up cherrios pasted on, hair all disheveled mummuring "please goooood, give me the strength to make it till nap time. just nap time, that's all, pretty please?"

First Day and um... my first day again?

2010-08-18T06:49:00.003-04:00

Yesterday was my 'first day' of my new job. And today is my real first day. I say this because yesterday, Cat, the stand-in babysitter-nanny-needs-a-day-off-fill-in, was there. I basically just kinda watched how she juggled the 3 kids, especially on nap time. Although, I say I 'basically just watched' I was helping out quite a bit, and cannot understand how one takes care of the 3 maniacs by themselves. But today - I will found out, whether or not I want to (find out that is haha).

I'm a little nervous. Had some anxiety again last night. SO that leads to a sleepy morning. I'm doing my vest and pulmo and I've half eaten breakfast. I did my hair while doing the vest and now the remaining 15 minutes are 'me time' where I can write down how interesting my first day was, and how I hope my real first day will run smoothly.

I am a little annoyed, although annoyed seems harsh but nevertheless, I am a little annoyed that when the idea of the 3 toddlers was presented, it was done so in a way that made me think Dylan (toddler #3) isn't there too often. "Just when they swing through VA" Well, let me tell you something, "swing through" and "every now and then" does NOT mean 3 x a week, 2 weeks on 1 week off. Or occasionally 3 weeks on and 2 weeks off.

However, I also had been "deceiving" about CF, not lying in anyway, shape or form though, as I feel they did to me. But I'll cut them some slack. ;-) I never did agree 100% to the 3 kids. I told them I'd give it a 'shot,' and 'try my best.' But it's not a deal breaker for them (or so they said), so we'll see.

Oh another weird thing? Cat made it seem like I should be bringing my own lunch. Which is fine with me, I just wish someone had let me know that because I don't have any food in my fridge to bring for lunch! haha. Small crises on the crises list of things that could go wrong, so I'm satisfied.

I just hope that my body starts to get into a good schedule and I can actually get enough sleep. =\ My ideal goal is bed by 10, lights out 10:15. That way I'll be asleep by 11 and can get 8 hours of sleep. I'd love to get 9 hours, but I have a feeling kyle won't let me go to bed at 9. haha I used to try that, when I wasn't doing anything of course, and it always seemed to be a no-go. I talk about sleep because I know for a fact if I don't get enough sleep, I will get sick. Plain and simple. And we just don't want that now do we? Certainly not.

And with that. Its off to eat my remaining breakfast, change into some clothes and begin my first day... again. Wish me luck.

PS We're going home thursday into friday (driving at night) and we're staying till tuesday morning then driving back during the day. I am NOT looking forward to the hecticness of this visit. People keep calling it a vacation. When you have a cookout kyle's mom thought would be a good idea to host, a beach day dedicated to CF with your sister to attend, a mom who wants to take everyone out to dinner, a step brother who 'has' to see you when you come up, your old boss who you actually miss and want to visit, a friends huge birthday bash to attend b/c you haven't seen those friends in almost a year, another birthday gathering to attend to on block island... and this isn't even including the people who were like "you should come visit me!" or "Lets get coffee!" All crammed into 3 days? Yea... it's not a vacation. Its a mini hell week. I love visiting the people, just not the hecticness/tiredness/drain-i-ness that comes along with it. I can only stretch so far people. PLUS the fact that the day we drive back, I have work the next morning at 8am sharp. So no recovery period. FUN.

Obla dee, obla da things are all right!

2010-08-16T16:46:00.003-04:00

Excuse the horribleness of:

A. Not know the correct spelling and/or words to the song in my title

B. The complete LACK of posting for eh, a month

C. The randomness that is about to follow--

Lets start off by saying a week is a long time. Now, sometimes a week can FLY by, and other times you begin to think you actually might comprehend the meaning of forever... A lot of things can happen in a week. Your car could break, you could get a job, get your car fixed, have an interview for said job that you're getting, travel to airport, take all your meds -- or not take all your meds in my stupid stupid case-- get your hair cut, cut your tendon? (a fellow blogger did this and I can't for some reason get out of my head how unlucky that was, but how lucky it was it a clean cut; she's a trooper and seems to be doing well, give the circumstance - I DIGRESS again) But like I said, a lot can happen in a week.

Well, a lot has happened in this past week, and a lot will be happening in the upcoming week. This past week I had a college friend come down to visit. We did so many things! We kayaked, we went paddle boating, walking, riding our bikes, shopping, history tours, swimming, beaching, clubbing... oh my the list goes on. Amidst this hectic fun-filled week was also a slacking week on my part. I started off doing ALL my meds, like a good cherub, but thennnnn I felt like I had to be entertaining my guest 24/7 and missed a cayston here, and missed another there, but no biggie right? Until it was a pulmozyme then an advair (I'm real upset about this one, Jess's post convinced me I needed to start committing to my advair; I have it for a reason right?! and I was doing so well, 2 weeks without a missed dose!) then before you know it, I'm coughing and hacking and well it's not pretty.

But the kicker is the whole time I was feeling guilty about it. Every time I could have just so easily gotten up and taken 7 minutes out of my day to do a med. It was really that simple. Oh, but no, not me! Goodness gracious if I ever just stick to my gut and do what I know is best for me. Well, it sure has bit me in the arse (as Gem would say ) because my friend who flew down to see me, picked up a lovely little virus of some sort on the way. We thought it was just allergies - I mean these southern allergies are the worst this year in 10 years or something crazy like that. But then came the headaches, sore throat and FEVER! YIKES! And even though I know medicine doesn't necessarily make a virus less catchable, it does make you stop sneezing and coughing and spewing stuff EVERYWHERE. And my friend just so happens to be one of those people who 'doesn't like medicine' because it 'freaks her out.'

That's fine in any other situation, but you're in my home and I would really prefer if you took an antihistamine so you're not sneezing your germs all over my couch which I sit/lay in daily. Please? No go. Again, that's fine, I didn't pressure her (ok ok I did a little but I still let her have her way) and she continued to sneeze and cough and yada yada.

Today my lovely readers, I now have a frog cough (nothing productive) that makes me throw up instantly if I cough more than 3 times in a row. Lovely, I know! A really humongous throat, sniffy nose, you name it I got it. No fever yet, although I did feel a little fever-y but I ignored it.

I wouldn't really care too much, except for the fact that I feel like an absolute douche. If I had been the good little cherub and taken my pills like the doctors say to, I could have avoided this (most likely) . But now I'm sick, and I have my first day of work tomorrow as a nanny. This would also be fine, except its the first day of work and they don't really know much about CF so I gave them a very general overview. When I say general, I mean, way way above general, I wouldn't even count it as an explanation! Terrible, I know, but I like the families to get to know me first, and see that I can handle the job then ease them into the disease. I mean, come on, would you throw a 2 year old in the pool and expect them to swim? No way jose! You put them in a bubble suit, with bubble arms and a bubble belt, obviously. Then one by one take the bubbles away and they can swim fine. That's what I'm doing. Except in the ocean and not a pool. haha

So all in all I'm freaking out. Stressing out. BIG day tomorrow. I hope this thing goes away nicely and I feel better tomorrow and not worse. And you better believe I have done all my meds so far today (although thanks to the bullfrog in my throat I decided that antibiotics look much prettier in the toilet with some cranberry juice than in my tummy).

Even with all this stressing me out, I have decided I'm going to try this "stress free, worry not" approach, and just let it happen. Whatever it may be. Maybe this is a lesson about sometimes putting yourself first is OK.

And with that I'm off to clean the apartment because it is a disaster area.

PS. I got new dishes and I am super duper uber excited. I can hardly contain it. They are white and beautiful and corelle so they'll last a long time and if I keep saying "and" I might just be able to make this the longest run-on sentence in the world. Don't you just love my grammar? I'm lucky if I remember "i before e, except after c".

Hope all is well for everyone else.

Trusting in...I'm not sure but I'm trusting in it anyway.

2010-08-03T22:46:00.003-04:00

So as preacher man aka Nate, who is a priest in training? I have no idea -- but as preacher man would say that sometimes "coincidences are really just a sign of something more" -- I might actually be starting to believe it!

Don't get me wrong, I'm not going to be a jesus loving freak ( no offense if he's your homeboy, I've just never really dug the whole 'religion' thing) -- but I do believe in 'fate.' And, I guess you can say, I have some sort of 'beliefs' even if they don't exactly match any specific relegion. Now, with that said... Here's my crazy story.

It all started with taking a year off of school. I know I needed something to fill my time with or I'd go crazy. So lazily, out of curiosity really, I checked my sittercity account and found a job in Williamsburg that I applied to. It wasn't anything special, it was exactly what I was looking for but hey, what the heck. Well, I had been checking it once in a while because I didn't hear back from anyone else.

Well, then, my car broke! It wouldn't start, it would just crank and crank but never catch. I rushed it over to my friend Joe the mechanic (he's this really jolly old man at Auto Merchants) and he said he'd fix it up in a jiffy. Well, a jiffy costs quite a bit, and I already feel guilty making my dad pay for everything but getting money from my mother is just suchhhh a hassle. She always puts me in the middle with the good 'ole "Well, I'll pay half and your father can pay the other half" nonsense. So, I took the bullet and paid for it myself. Which led me to check sittercity again to see if the person I emailed ever responded, because seriously I need a job. But then again, did I? I still wanted to work for Jeanette (4-6) because I do love her kids, and its an easy job-- not to mention flexible. Conclusion; yes- 100 dollars a week does not get you buy, hell, it doesn't even pay my grocery bill for the week!

I sign in and ----NADA! zip zero zilch. Oh well, moving on. Wasn't a big deal, I still have Jeannette's. The weekend is almost over and I'm missing my car terribly! It needed a new part from the dealer and I had to wait till monday so they could order it. (I took it in Friday). Sunday I get an email from my sittercity account. (weird as I have NEVER been emailed through this site) And it was a family asking if I was still looking for a full time position because they have two little girls. They lived in williamsburg (check) they were offering 10$ an hour (check) and the schedule? 8am-4pm (check I can still work at jeanettes) the kicker, which really makes me think... I get every other friday off. Why is that important. Well, fridays in general are usually important for young college students such as myself, minus the college status, but Fridays are adult CLINIC DAYS! So it works out perfectly that I see my therapist on fridays and clinic is run on friday mornings. Weird weird weird.

Seeing all of these coincidences, that I just HAPPENED to check my sittercity, and it just HAPPENED to be in Williamsburg, with the hours I was looking for (although the 8am will need an adjustment period eeek - once I'm on a schedule I'll be fiiiiine think highschool I was up at 530 am each day starting sophomore/junior year) with a decent pay and two little girls?? Girls are much easier to care for than boys I find. I said, what the heck I'll sign up for an interview. The way the phrased it, it sounded like they had a few others lined up.

Well, I had that interview tonight -----

Oh wait, before we get any further, coincident number 1 billion: They live 3 minutes from jeanette. And we continue:

I had the interview tonight. I'm not going to lie, I was nervous. I always get nervous. Being a full time actual nanny is demanding -- and I always feel terrible having to say "I have CF so I'll need two weeks off frequently for hospitalizations blah blah blah" Thats always the source of my nerves.

Well, the girls were SO cute, and awesome. I had them hugging me and sitting on my lap within the 30 minute time frame that I was there. But man! They put me through the toughest interview to date. I was asked about previous tantrums and how I've handled them, any emergency situations I've dealt with, what I would do with a 1year old and a 2 year old, my disciplinary routine, etc. etc. They really actually caught me quite off guard! haha. But I didn't lie, and if I couldn't answer a question I told them. My answer to what would you do with a 1 year old and a 2 year old was "Ummmmmmmm. Huh. Well, they'd definitely be a lot of dancing, singing, funny faces, coloring... and I'm not exactly quite sure what else. I don't know their personalities yet, so with every child its different" But let me tell you that "um" lasted a little too long for my personal tastes, but HEY I WAS NERVOUS! Its not like I haven't watched a 10 month old and a 23 month old before, but how do you explain that you just sit on the carpet and play with blocks, or take turns passing an object back and forth a hundred times? All the while singing some song (its this terrible habit, I sing EVERYTHING when I'm with small children, you name it I'm singing it. If her shoe is untied I'll be singing "Let me tie your shooooeeeeee so you dont trip and FAAALLLLLLLL, the bunny runs round the tree then its tied as you can see, and your shoe is as good as new!" to my own personal made up tune. I really didn't know how to explain that. So I didn't. They'll see.

Which leads me to my next point -- they offered me the job. Almost. They will call me tomorrow to confirm it. Basically they wanted to do a background check (although there's not much there it will just say "CLEAR", or however that works) and call my references. But I quote "Well, we think your wonderful" there were a few non-ideal situations, but I think the ideal situations outweigh the non ones. So it might be a go.

I'm nervous, but excited. The little girls seem like sweethearts and I think I agree with most of their parenting so far (from what I heard). Oh, another great point? They're only looking for a commitment till the beginning of March. Done and done. I will finish up with them (they're moving- he's military) and then have a few months and then Kyle and I will move.

It seems soooo, coincidental. It fits so perfectly that it must of be a sign of some sort. That this was meant for me. I mean,come on, ALL those coincidences?? Really? So I'm going for it. What the heck. You'll never know if you'll sink or swim if you don't get in the water. Right????? eeeeek.

Plus, the cash would be nice and I can finally, well maybe, not rely on my Dad's allowance each month to get by and pay my rent. That would be so satisfactory! and sweet. definitely sweet.

On OTHER NEWS. (I know there's more!?) Kyle got a sick-ass computer. Mac Book but its souped up and pimped out. hahaha. It has 2 harddrives, both 160GB both leopard and windows 7 installed, Microsoft office on both, and has 4 gb of ram instead of 2. say whaaaaat?? Plus it still has some of the warranty on it, but the best part is? It was only 700 buckerooos. Woohoo. That's my bargain hunter. =)

Just for the record...

2010-07-24T13:06:00.003-04:00

I just was glancing at my blog to make sure the format was still looking OK; a habit I have formed every time I click that 'publish post' button. And what do you know? I have officially blogged more in 2010 than either 2009 or 2008 - go me.

Accomplishment of the day? I think so.

What to do with days like these?

2010-07-24T12:42:00.004-04:00

What do you do with the days where you feel useless?

What do you do with the days you feel you are a waste of space ?

What do you do with the days when you don't want to smile?

What do you do with the days when you know what you're feeling is okay, but you would rather really not be feeling like that at all.

How do you change?

Change seems so humiliatingly simple, yet so dauntingly hard. Its appetite for determination is larger than my supply. I simply cannot do it. Yet, typing those words I feel embarrassed. I have changed, very much so, and in an incredible short amount of time. So why do I feel so useless? Why do I feel so unaccomplished, so lost and so pathetic? Why can't I simple accept that change takes time, and I will eventually find something I love to do.

I'm impatient. Oh so, impatient. If I want something, I want it fast, I want it now. Unfortunately, it seems I have inherited that disgusting trait of American living - impatience. This change simply cannot come fast enough. Please, rid me of my sighing when waiting takes longer than a minute. Please, rid me of my annoying "never mind"s when changing an activity takes longer than a pause. Please, rid me of my hatred when kyle does not SPRINT to the dinner table after I exclaim 'dinner's ready.' Please, please, please -- can't I find some patience?

My talks with Preacher Man - aka Nate- help me realize so many things, and sometimes the words coming out of my mouth sound so foreign. Am I lying or do I really think that way? I try not to lie anymore, so I really must think that way, so why can't I listen to myself?? haha. It's all about perspective. That's what I was blabbing away about yesterday. It was a really enlightening conversation. I just can't figure out for the life of me, why I can't just listen to myself. I obviously have some good ideas left in this vegging brain of mine, so why can't I practice what I preach? I have no problem doling out advice and opinions left and right, so if I were to meet my exact twin, what would I say about her? I'm sure I'd have some great opinions, but damned if I follow that advice. Which brings me back to change.

What do I do on those days where change simply does not come fast enough?

Oh, and note-to-self: can we stop being so grumpy now, please?

PS: morphine = super itchiness! Ask for benadryl next time.

I'm so lucid, but everything I say is a bit 'off'....

2010-07-16T15:48:00.002-04:00

that was my catch phrase yesterday. I told EVERYONE that. I had a blast. Whatever they gave me was awesome. It was Novocaine on crack. It seriously kept my lower jaw numb for over 12 hours! I kept ice on my face for the first 7 or 8 hours because it felt so nice, and I didn't get sent up with any instructions so the nurses didnt see the harm in letting me keep them on. Although, they were trying to get me to take breaks here and there but i didn't. haha. I think thats why I wasn't swelling yesterday and could talk so well.

Overall, it went very smoothly, and now its just 'painful' but manageable with some morphine. coughing however, is a different story. When I do cough, it hurts! Because you put so much pressure into your jaw or mouth really when you cough, and you don't realize it till your mouth hurts and then you're like WOW that does hurt. so my body has not been coughing very much. I coughed a total of 4 times yesterday and a handful of times today. Yesterday coughing sucked because I couldn't swallow very well due to the tube they had to put down my throat, and the Novocaine on crack relaxed so many of my mouth/throat muscles that I couldn't control my tongue very well - haha this was funny!!-- so when I coughed, I obviously coughed up nice thick stuff b/c I hadn't been coughing at all, but have a lot of junk in there. Well, it got stuck at the back of my throat. I couldn't 'spit it up' because I didn't have control of those muscles, and I couldn't swallow it because A. my mouth was so dry and B. it hurt so much and C. it was so sticky it wasn't moving. I literally had to let water dribble down my throat for almost an hour till it was gone.

haha get this, I tried to scrape it off the back of my tongue with one of those sponge-on-a-stick, but I got caught and was told I couldn't stick anything in my mouth like that. haha oh well.... worth a try.

Anywhoo, todays been okay. mouth hurts but its not pain i'm used to. I'm used to sharper more intense pain that goes away quickly, think-- breathing lung spams, joint movement pain, etc. This, this is new to me. Its painful but at the same time not? Its very achy, very very achy to the point of pain. If that makes sense. Its tight and i keep biting my cheeks haha. but its much more of a constant achy tight pain than a sharp pain, again, like I'm used to. So when they ask me to 'rate my pain' I'm very conflicted, because I'm very uncomfortable but I know I've had worse pain in my life so I dont know what to say. I've told them that unless I'm in tears and I am dying I probably wont ever go above an 9. That said Without any morphine or motrin I'm a seven-seven and a half. When I cough, it pushed on that 9. With morphine (IV pain killer) it takes me down to maybe a 5 but nothing less than that. Its very weird. So we've been trying morphine with regular motrin and then some Tylenol with codine... idk I just seem to be uncomfortable all the time, the degree to which varies depending on the drugs, but overall its uncomfortable.. I wouldn't say I'm in agony or anything just uncomfortable, but I wasn't expecting this type of 'pain'. Its just very foreign and bizarre. Almost makes me think -- this is what people think hurts? I've had some stomach aches much worse than this that I would have loved to get morphine for... which again is why I don't use anything above an 8 maybe 9 on the pain scale because it can always get worse.

Overall though, I'm doing really really well. My teeth haven't bleed today so we seem to be in good shape. I ate food today, including some small small pieces of chicken. AND the best news, I haven't lost any weight! even with not eating for about 3 days since i've been here basically.

My docs are really good too. He said right now try chest pt only how and when I feel I cna handle it, we'll keep the pain undercontrol as much as possible because of the 8.5 pain I feel with coughing... and then we'll just be very aggressive after the next day or so when I come off the morphine and can cough good again, and its not painful. sounds like a plan to me!

I love everyone here, they do such a good job. It really makes me appreciate how much time and effort they put in for my care and well being. I try to learn everyones name- I feel its the least I can do. I am going to try to make thank you cards for everyone here just so they know how much they are truly appreciated.

hope everyone is doing well, and feeling good.

xoxoxoxoxo

Bite your tounge

2010-07-15T00:36:00.003-04:00

I should take my own advice!I just kinda skimmed through my blog, and I say some pretty not nice, or very untrue things. I let my overdramaticness/emotions take a hold and speak. blah. Like one time I said my sister is the eipitiotmy of laziness? Not true. I have seen many people lazier than she is. and also, its very hard to judge 'laziness' for someone who has lung function barely over 20 -- its not laziness, she just literally can't do it. *smacks head* I feel like an idiot. If she had read that one day and not realized that I truely didn't think she was lazy I would feel awful if that was her last impression of me having of her (did that just make sense to more than just myself? --- what the heck I am talking like yoda tonight. )

Well, anyways I say a lot of a things I truely don't mean here. Really its just a way to get my frustration out in 'words' and down somewhere so they don't actually come out of my mouth and perhaps hurt the person I'm talking about.

Moving on- Wisdom teeth are coming out in 6 hours. EEEEEEK. I'm the first appointment. oh man. oh man oh man. wish me luck. I'll hopefully get a picture while the meds are still strong so you can see my funny chipmonk cheeks hehehe hope things go well tomorrow. and now its time for sleep

Oh, hey remember that blog where I said I'd have tons of time to blog in the hospital??? UMMMMM yea right? I tried to play a little bit of my online game, and I was logged in for almost 4.5 or 5 hours and played maybe 30 minutes. broken into tiny tiny time frames too mind you, a minute here- 20 seconds there, kill one thing then someone else would walk in my hosp. room. grrrrr. sleeptime.

Family Love

2010-07-06T10:33:00.002-04:00

Family is down to spend the week of the 4th of July here. Although they didn't go out with me and kyle to see the fireworks. So glad you came for the 4th of july in one of the most historic places of the USA -- greeeaaaaat. But I didn't mind. We had had a long day.

I'll have to update later about what we've been doing. I've been SO exhausted - but luckily the week after they leave I'll be going into the hospital for a tune up/ getting my wisdom teeth out. Fun fun fun.

Heres just a small list of the things we've done so far I'll elaborate next week when I have ALL day and ALL night to do NOTHING! woohoo. Gotta love hospitals.

Things we've done:

Went to a waterpark and stayed ALL day
Ate out at restaurants (quite a bit!)
Swam swam swam swam swam
Kayak on the huge lake
Went to see a Movie

Thing we are going to do:

Spend the day down in VA Beach
Swim swim swim
Have a mother/daughter Spa day
Go to the river to swim some more

I'm not too sure what else, but for right now that seems plenty for me. haha.

hope everyones doing well!

This will be short... this will be short...

2010-06-29T12:33:00.004-04:00

I have this problem, of always starting off telling myself, "I'll just post a nice short little blog today" And then I start to type and the words have minds of their own and start to spawn all on their own, I swear! So today, I am forcing myself to actually make this a short post:

I hate the fact that I'm so pessimistic. I love reading all these other CFers blogs, but sometimes their positivity just seems so.... annoying? Sad to say but it really pisses me off. Seriously, the people who claim they wouldn't give up CF if they had a choice because it 'made them who they are' ... well that's just the most ridiculous statement ever! C'mon. It's okay to say you HATE CF. It is, I promise. Just like people hate spiders, and usually spiders don't even cause you harm. They just catch flies (fine by me I absolutely despise flies with a passion). But to say that you wouldn't give it up?? What is wrong with you? Ugh.

And then there are the medium mixed crowd; who sometimes vent about hating CF but sum it up with things like "But its okay to be negative every now and then, negativity in small doses is usually constructive. Not enjoying CF will only help me to fight it more, and I'm still so positive blah blah blaaaaaah" Just when I think I can relate to another cynical hateful CFfilled CFer, they go and get all positive on me. Really? Why can't we just be allowed to hate it? I hate it, your parents probably hate it, you can hate it you know. But people just seem to think that its not okay to whine and complain about how much you hate CF. Well, this isn't one of those blogs. I hardly say positive things on here (although I'd love to change that...) for me this is my place to whine and complain and flat out scream that I, Elizabeth, HATE CYSTIC FIBROSIS! And now I'm done. Maybe tomorrow I will be more positive -- (doubt it ;-P)

My Ear is Inside OUT!

2010-06-28T11:13:00.002-04:00

Say What? That's right. My ear... is inside out. Or at least, that's what I like to call it. You see my lovely ear decided a few weeks ago to get 'clogged up' or 'fluid filled' or whatever happens when you can suddenly hear yourself as you speak (echoing in side your head), or when you breathe in you feel air seep through your ear canal? Does anyone know what I'm talking about here?? Sometimes this feeling happens when you block a nostril and snort up your nasal med through the other one. Boom! Inside out ear. But those usually go away.

Now, this isn't just a 'my ear is clogged'. Oh, no, it's never that simple! See my ear will be inside out most of the day, then whoosh, just like that, clear as day. Its very very frustrating, not to mention uncomfortable! I explained all this at clinic, and I thought it was just all the extra fluid I have in my nasal cavity... but apparently not. I love my new nose spray that I got, dries me right up... except for this silly inside out ear.

The Dr. W. said if it is an ear infection, then the bactrim will take care of it. Mmhm. Sounds like good reasoning to me. So why after a whole week of bactrim is my ear still inside out?! I don't like hearing what goes on in my brain, or worse, my heavy breathing! And man, breathing in? The worst! I breathe in through my nose and I feel like my ear is going to implode into my skull. Really, ear, really?

Dear Ear,

Please turn right side out again, and stay that way. You are for hearing, not for hurting. I would be much obliged. Thank you,

Your human aka your home.

PS if you don't straighten out Imma go Vangough on you and rip you off. Just sayin' get your act together. =D

Anyway, now that I have sent a lovely death threat to my ear, lets move on with even more frustrating CF related things. . . INSURANCE! Woohoo. This is one of my favorite topics. I love insurance companies! They are seriously the best. (Anyone detect sarcasm here?) Well, my mom was Audited at work to make sure I was still a full time student. Which, I'm not.... hmm. I had sent my Michelle Law paperwork in (overnighted btw to make sure it got there FAST...) but now that I'm 20 dollars poorer, and no Michelle law, I need to fill out Cobra stuff because lo and behold I am insuranceless!!!!!

AHHH. What a scary statement that is! I can't fill anymore meds, or see any doctors until I have cobra. And I only have 2 days to get the paperwork in. Seriously people? two days? What is that? Oh not to mention the winner -- price. Oh yes, lovely lovely price. What's that you say? 600 dollars a month for coverage? No problem, let me just break open my golden piggy bank to reveal my diamonds and rubies... oh wait, I live in the real world -- hm alright, try this again. 600 dollars you say? What the #$@! ??? Serious? I mean, don't get me wrong 600 dollars is much better than 250,000$ a month but how am I supposed to pay that? Ugh what a mess.

It doesn't help that my mother is being soooo unhelpful. 'Mom call me when you can" -I get a text. Mom do you even know what CALL ME means anymore? Texting doesn't cut it. EVER. I swear that woman is off her rocker. Anytime she can get out of speaking with me via text instead she will do it. What a bitch. yea yea yea I know, she's my mother, but honestly until she starts acting like a mother again I'm not calling her mom. I call her Karen all the time. But, I digress, back tot he story.

Mom- call me... texts me instead. GRRR but I go along. "Mom, Can I have the number for michelle law so I can see if I can't get this to go quicker, because cobra is expensive"

Mom: "well you don't have coverage RE you need to do cobra now. Sorry!"

(What am I stupid? Obviously, but I still need the number...Oh and what is this sorry business, does saying sorry about it being expensive imply that you will not be helping to pay for it?? )

Me: Okay, well do you have the Michelle law's ppl # b/c if it takes more than 5 months to go through I should just become a student again =/

Mom: I don't think it will take long. they should be sending us confirmation that it is being review and that the letter should tell us when to expect an answer

(still no number! If I can just call them, I might be able to get an answer sooner than waiting for a letter that you will [probably get and forget to tell me about)

Me: ------------------------------ *At this point I gave up texting her because it was useless. Also, because kyle spilled oil all down his front at work so I needed to bring him a new set of clothing.

Sigh, mom oh mom, you get a letter today too:

Dear Karen,

Please start acting like the woman I used to know. The woman who LOVED her children very much so, and would jump through as many hoops as she had to, to help her babies. Now, you couldn't give two hoots what's going on and everything that's going on [with me] you see as a 'hassle'. You have simply washed your hands of responsibilities of both me and Julie, and its heartbreaking. Just because I moved, doesn't make me any less of a daughter. I could still use a little money here and there. (Don't get me wrong I'm not 'ungrateful' I really do appreciate you paying for my car insurance and health insurance... but I'm saying a little help towards rent or groceries would be cool). I don't know Karen, you just seem so ... distant and childish lately. Claiming 'you're not going if Stash is going" as your daughter is being carted off to the hospital in an ambulance??? This is not about YOUR feelings karen, and it should never be. You should be willing to do anything and everything for your daughters. Especially the one who lives with you right now who really needs a lot of help. You should be embarrassed that Stash does most of the housework there. And if you even try to tell me she won't let you, that's bullshit. Do it before she does and you won't have a problem. I'm just saying. And that same old excuse "Work is stressing me out" yea yea yea work stresses EVERYONE out, you're not special. And you think WORK is stressful? Try having a disease where you can't even work because ssi and akjdf;lkajsd;fkja;dfjk see now I'm on a tangent and I"m just getting more and more frustrated, because even though I'm not talking to you I feel like I'm talking to you and you just don't get it. So Karen, please PLEASE please please go back to the fun loving MOTHER I used to know. I'm not sure I like the new cougs very much. ='/

Your Youngest,

Elizabeth

PS and if you read this in real life, well it's your own fault, I've told you before not to read my blog, and theres a reason why I don't link it to anything... but if you do read it then I'm also glad. I have no intention of hurting you, just hoping to help you get your priorities back in line. That said take what you will from it, and will you please start loving me again??

Sigh. Now all I'm upset. Not crying my eyes out upset, just disappointed. My lawyer finally called me back saying he didn't get my first message, "The machine must have dropped it" OR you just didn't feel like calling me back you asshole. Apparently court dates are taking 12-14 months to schedule. SCHEDULE never mind actually going to court. It could be scheduled for the next year! I just feel like I'm losing my mind. I just want to be done. I want to worry about things normal 'teens' do. I want to worry about my highlights, or how tan I am, or what I"m going to wear to the club on saturday. Or who I'm going to get a drink with on thirsty thursday. I don't want to worry about when my SSI will finally get approved, or how to pay for health insurance, or my mother not caring for my sister in the ICU, or needing a gtube because I can't gain weight... I don't want to worry about these things. EVER. And yet, these are all the things I am worrying about. I don't care what my hair looks like anymore, I don't even have friends to go to the club with, and dancing for 4 hours? mmhm okay, nough said. I've just had enough. But I can't do anything about it. I can't just throw CF away. I'm trying my best to love my life, I really am, but sometimes it just downright SUCKS. There are some things I wouldn't change for the world. I wouldn't give kyle up for anything, and if having kyle means I have to keep CF, then I would, but if I could give up CF and still have kyle, I would chuck CF in the garbage disposal and watch it be chopped up into smithereens.

Alright I'm done. I started to blog with the intentions of just jotting down my frustration about my stupid inside out ear and now I'm just gone on and on complaining. Oh what a day it will be. But at least my coffee was made right today? (almost but I'm counting it as right anyways).

Tomorrow will be a new day, and that's what counts.

xox

Conner Man

2010-06-25T13:26:00.002-04:00

Little Conner Man lost his battle with Cystic Fibrosis last night. He was braver than I'll ever be. My heart absolutely just breaks thinking of Sarah and her family. How empty her heart must be. I simply cannot imagine what it must be like to lose a child. A part of you. Conners story can be found here. It is not a fairy-tale, and there are no happy endings; only CF. Caution: it will rip your heart out.

Breathe easy little conner man. Thank you for being so brave and sharing your amazing story with the world. Enjoy those well deserved angel wings.

Stranger like Me

2010-06-21T11:04:00.002-04:00

I will try to keep this organized?

Health:

I had clinic last Wednesday. It went better than expected. I only lost 4 lbs (which is good because that means I gained back 6 of the ten I initially lost) and I wasn't even wearing Jeans! haha. My PFT numbers didn't go down. --Not true. One number went down but not by much, FEV1 was the same at 64% so no real worries there. I still asked for bactrim because I am feeling sick. I also switched to Creon enzymes so I can get vitamins and high calorie drinks for free. I got some info on CF and pregnancy to read over (for the future MOM -- if you somehow find my blog again and read it even after I told you not to?) and the doc said that basically if I can keep my lungs above 60% and stable then I shouldn't have too much of a problem... but he had no idea about my liver issues and pregnancy so they'd have to get a specialist for that. Also he said it would be a good idea to be followed by a High Risk OBGYN instead of a regular gynecologist because the better they know you and your health, the better of a doctor they can be to you. (did that make sense? I had a hard time wording that). I also stopped taking Megace due to it stopping my periods, and in order to think about pregnancy you need to have stable lungs, stable weight (workin on it) and stable cycle (working on it haha). So that was that. Thank goodness Shannon my psychologist was there to help me ask questions - she's such a lifesaver. Anyway, Hospital stay is scheduled for July 12th, and on the 15th I'll get my wisdom teeth out. thank goodness. It hurts to smile because they 're so sharp poking out my gums! They slice up my cheeks. =( boo. That's about it for the health category... Oh except my compressor for my nebs broke and I chose the worst company to buy it from and I was going to return it (It was broken lovely right?) until the ferret demon decided to chew up the filter! GAH. 150$ down the drain, thanks goose.

Social Life:

Well usually there's not much in this category but I made a new friend! She lives in my apartment complex and her name is Mari. She's really nice and we get along really well.Its unfortunate though, because she goes home for the weekends because she has a little girl. She's my age, and we're so similar, I just wish she was here on weekends lol. But she has more important places to be. haha

Also, went to a crab pick, where you buy lots and lots of crab and just sit around eating crab all evening/night. It was so much fun. It was such a nice night, the people were funny and also intelligent (they were all W&M students or similar situations) which is refreshing because you can actually hold a conversation that doesn't have anything to do with MTV. It was a nice treat for me because I had 3 beers! hehehe. I'm not supposed to drink with my liver, and I hardly do anymore, so after 1.5 beers I was feeling great. I was probably a little tinsy tiny bit drunk by the end of that 3rd one. But I sipped them over a period of 4 hours or something like that. No funneling for me. haha. It was still great.

Next, I have begun taking marinol again due to not taking megace. Well, it makes me eat like no tomorrow. I literally eat until I feel like I'm going to throw up. Last night I ate over 2 lbs of food. (I like to weigh myself before and during this eating fest). Well, if you have no idea what Marinol is, it's synthetic THC aka weed/pot/greens whatever you call it. The difference is its not supposed to theoretically get you 'high' just supposed to make you hungry? (this is what the doctors think) well, what it really does, is make you high as a kite, and then you feel as if you haven't eaten in years and you will try to eat anything you can get your hands on. At the cost of being a moron. I love marinol because I really do eat a ton of food while I'm on it. And its comforting to know that if I haven't eaten much all day I will eat if I take marinol. Whereas some other appetite stimulants sometimes work, but sometimes don't? Moving on-- the reason this is in the social life section is because I decided to call some friends up. And leave messages. I can't tell you what I said but one of them called me back and chatted with me a bit. This is a snippet he reminded me of later today:

Me: Who? what?

Him: Tyler shinn, you know the boy who called kyle

Me: Tyler shinn, oh you must be talking about the world cup because they wear shin guards!

Him: *Lots of Laughter*

Me: *hands the phone over to kyle* I'm not sure what we're talking about anymore but I think it was funny because he's laughing...."

Oh the price I pay to eat. =\ Most normal humans think its "cool" that I get to take marinol legally. I however, disagree. I cannot do ANYTHING on it. I can't think straight, I can't talk, I can't really walk or I get virtigo/dizzyness, I laugh a ton which is good chest exercise except I'm too relaxed to cough! Its very very different than 'smokin a joint' and sometimes I get extremely embarrassed that I need to take it. Because I don't know what I'm going to say, and I don't know how I am being presented. Everything is skewed while you take it, and I get paranoid easily. I can't figure out if I'm dreaming or if its real life - so I can't pee (thinking its a dream and I'll really just be peeing the bed?) then when it starts to wear off I crash into bed and sleep like a rock. Luckily kyle loves me, and knows I'm not that dumb all the time -- just when drugs are burning holes in my brain haha-- And my friends know my situation and just find it amusing if I do leave them a call and they know I don't necessarily enjoy 'being high' if you will.

House:

It was a mess, and we (kyle and I) bought a 5 dollar chess board/checkers. We decided to play and I kept losing and then I was getting pissed off because I kept losing and feeling dumb, then goose ate my machine -- so I was furious. So what did I do? I cleaned. It took kyle and I 2 hours to clean 750sq. feet. haha. Thats how messy and gross it was. Plus we have a fly infestation. Its the most disgusting thing ever. Fruit flies. so small you can't even smush them with your hand. We tried to suck them up with the vacuum. Didn't work so well. But now the house is clean and its much less stressful.

thats all I have time for today because apparently I'm supposed to drop off this movie, and mail a package and bring lunch to kyle then go to work earlier so her pipes can be fixed. >( I don't like when people tell me things last minute. It takes me a long time to figure out where my energy will be spent. Its like that spoons article another CFer blogged about, or posted (hmm maybe ronnie posted it?)

Anywho, that's all. Sorry there was no part 2 to my last blog. ahha. See, the problem with only blogging once a month or once a week even, is there is always too much to write about. But if I blog daily then its the same boring stuff over and over? Weird and confusing I know. haha

2010-06-01T01:38:00.002-04:00

Woah, I haven't posted for nearly a month! Geesh. Hey life happens, right? Well the past 2.5 weeks have been filled with Adventures. Kyle finished school and doesn't start research till tomorrow -- er-- today? So while he had all the free time in the day to spend with me, I still had work... or did I? Turns out Emily caught some upper respiratory infection bug deal thing, and I wanted to part of it - so I didn't have work for 2 weeks. Fine by me. =)

Kyle and I did a lot of fun things together. We went to the aquarium where we fell in love with the river otters - they were just giant versions of Duck Duck and Goose. Then we went to virginia beach with Lisa and her doggie (she also came to the aquarium with us). We went dumpster diving through William and Mary which is always fun! We snatched a really handy desk that we're using as a computer printer station. We got some great plastic drawers and a lamp, and kyle picked up about 10 vacuums thinking he could sell them on craigslist. *rolls eyes* needless to say he hasn't sold one yet.

We both got mountain bikes, so we biked to Colonial Williamsburg, which was nice, but then, I took kyle to the park I used to take the little boy I nannied for to... and it was awesome. It has a mountain bike trail that I didn't even know it had. its about 6 miles long through the woods, its pretty serious. We've done that twice. Although the second time was today and I was just emotionally a wreck. I have no idea why but every 10 minutes I was breaking down crying for some reason or another. I was very discouraged.

I think it had to do with the fact that we started at the entrance, as oppose to getting on an emergency entrance -- basically if you start at the entrance you must travel at least 3 miles to get to the first emergency entrance/exit. Well, there are 10 entrances so when we went the first time we started at entrance 10 and had to pass 9 , 8 , 7, 6, etc. to get to the end. I think I was freaking out knowing I had to go 3 miles to leave. Whereas before it wasn't a big deal because I could just leave at the next exit. Well anyways, I didn't have too much fun this time with all the crying I was doing. But I did have a good chuckle when Kyle flipped over his handle bars. He was fine, only a little scratch, but the way he sped around the corner all I heard was him going "THUD CRUNCH (because of the dead leaves)" followed by an UGHHHHH -- take this one slow!

I also crashed my bike into him. hehe. I swear my brakes weren't working when I tried to stop. And I smashed right into him about 30 seconds into the trail at the start. I cut his leg. oops. It bled too. That was the first time I cried, and asked to go back.

Oh I am a mess. I felt physically better than the first time we went but I was just so emotionally distraught that that made me feel physically ill too. Not a good combo. At one point I had a full out panic attack when we passed mile marker 3 and still no exit. Bring on the water works!

It was pretty embarrassing and I felt bad too because no way was this fun for kyle, but he was a champ and still stopped at every single hill so I could walk my bike up, or he'd go up the hill, park then come back down to walk my bike up for me. And since we were mountain biking -- the whole trail is one giant hill. Poor guy. I always feel like I'm holding him back. Like, if I Just didn't have CF, we would have had a great time! =\

Anyways, back to our pseudo vacation, i had a few doctor appointments sprinkled throughout the weeks, and I'm finally going to get my wisdom teeth out. =\ Fun? They're going to do them in the hospital so I can have a tune-up at the same time. Which is nice because I could probably use a good tune up by now. It's been almost 6 months since my last one! Which is kind of nice, because it shows that I had a rough patch but I'm still doing pretty well. But It kinda sucks because I know in march I wasn't feeling great, and then by april I was ready for a tune-up, but Cayston seems to be a wonderdrug and I've felt great on it since starting it. Shame I can't do any other meds with my Eflow. I'm sure I'd feel amazing if I could.

Oh, another fun thing we did was bowling on a saturday night. All you can bowl from 10pm -1 am. They had black lights and fun music, and disco balls. It was a ton of fun. We stayed the whole time! And it was only as expensive as going to the movies on saturday, so I think that might be a more frequent date night.

We also went to duke to visit Cal, for his 21st birthday and we went to a saloon. Hilarious. complete with mechanical bull. It was a lot of fun though. I love to dance and I miss dancing at clubs with girlfriends and what have you so being able to dance with some friends was nice.

Ah there's so much more to write about (see Beth, this is what happens when you don't blog for a month everything builds up!) but I need to go to bed, GASP it's 2 am? holy moly. I really gotta go.

Part 2 to come tomorrow.

Oh Mondays

2010-05-10T19:34:00.001-04:00

Well, I started off the day better than usual, meaning, I actually woke up at a reasonable hour. My alarm went off at 9:33 am and I woke up, relaxed and waited until about 10 to finally get out. (I dread actually getting out of bed, waking up is fine, but getting up and moving is the hard part -- coughing attack ensue!)

I ate breakfast, was able to keep that down along with my megace. Caught up on my blogs, and of course facebook. Watched a few things on youtube, and then I was ready to start the day. . . Almost.

Showered, put on some makeup, kyle came home, ate a little mac n cheese. Then NOTHING. I didn't have to go to work because Emily is sick. cool. But again, I didn't do anything. I can't play the piano because kyle is studying. I didn't feel like going anywhere by myself (not that I have places to go). So basically I just sat home and surfed the web all day. I read some parenting columns (why, no clue, just maybe brainstorming idea for jeanette...) read some recipes, thought about making marsala chicken -- realized I didn't have a wine cork opener, decided against marsala chicken, read one of my recipe books, found an easy one, went to the store, bought 3 ingredients, went home, made dinner, ate it, cleaned it up, and now I'm back on the computer with nothing to do.

Oh my life, why are you so boring all of a sudden? Why can't I find some direction to take you in?? GRrrrr.That's all for now. Nothing creative, nothing cool, nothing new. Just the same old boring stuff.

The end.

Nothing New

2010-05-09T22:44:00.001-04:00

Nothing new is happening here. It got cool today. It was only 71 degrees --which, yes I know, is not 'cool' or 'cold' as I discribed it to my dad today, hehehe....but compared with the 94+ degree days we've been having, 71 seemed chilly.

It was mothers day today, made my mom a homemade card with a poem inside. I made the same card for Kyle to give to his mom. Sneaky sneaky. Just don't tell them that! ;-) I also mailed my mom some GREAT smelling soaps (coconut, one of our favorites) and these useful socks designed to be worn in pumps. On the days its too hot to wear hose, but she needs to wear something on her feet. Perfect solution.

Julie is double listing at cleaveland clinic. Phew. But she sent everyone an email saying that Boston now has her on the "Hot list" which means, that they've expanded her critera for lungs. --Meaning, if the lungs have a bruise on them, they will call her, as before they wouldn't.

I don't know. Something just doesn't sit right with me about this. If they weren't going to call her with those types of lungs before.... (because they weren't up to par) why are they going to now? I want her to get the best lungs she can! Not some beat up pair that 'might' fair okay. Grrrrr. I think it has something to do with her double listing, they don't want her to screw up their UNOS listings/ratings or something silly like that. But this is LIFE that you are talking about. If you start cutting corners.... I don't really wanna think about that.

Anyways, that's about it over here. Kyle got back from his Uncles funeral, and now is taking his rescheduled exams this week. So he's all stressed out like usual. And I need to go food shopping asap. tomorrow definitely!

The end - for now.

Livid

2010-05-05T14:56:00.003-04:00

I am livid. LIVID. I cannot believe the excuses this woman makes for her children. Back story is needed here.

Allen decided one week in march that he just wasn't going to school because "he was sick" -- for a whole week? Bullshit. He didn't even have one symptom of being sick, the only thing he was, was tired. That my friends, comes from his mother letting him stay up past midnight on weekdays -- sorry SCHOOL days.

When he got his makeup work the next week, he decided he wasn't going to do any of that either. I reminded, and reminded, and bullied, but nothing. I told his mother "You know, Allen really has a lot of makeup work to do, including a 10 page science project" and left it at that and encouraged him nonetheless to do sheet by sheet of his makeup work.

Well a month has now passed and I was furious that he STILL hadn't bothered to work on the critter project -- and even more so that he lost the sheet. Well that was monday, when I told him "Tomorrow you will get another sheet and we will do it after school, do you understand?" Well, he found the sheet on monday. Didn't bother to do a single thing, and who found it? Jeanette. This kills me. She found it and she just let him not do it. Knowing full well it was due APRIL 2nd!

Well yesterday, I had had it, and made him do his project. This was his answer "Well, I'll just do two pages of it" (that was the deal we had 2 weeks ago, we'll do 2 pages a day till its done) Not anymore. I made him work on it till I left. (Only an hour. And he finished it! So quick and would have been quicker if he wasn't being a snooty little jerk about it: examples: "Can I just do it in my head? (rough draft --NO) Can I just do a real animal instead of making one up? (Not the project, NO) Can I research and look up online a hippo? (Why?...) I want to make my animal like a hippo (then use what you know about hippos and go from there). "

Excuse after excuse after excuse. That's all this kid does. I know he was upset, because it lookd like he was going to cry every 5 minutes, but hey sometimes kids need to realize, that yes make up work comes BEFORE video games. So next time you want to play video games for a week at home by yourself, be prepared for the consequences. That's all. That's the simple lesson I want him to learn.

Well get this, Jeanette texts me "Hey Beth, just want to let you know Allen and I will finish his critter project over the weekend :) " ---- are you freakin' kidding me? I texted her right back, and to be honest I was a little nasty. "Is there a specific reason why the project will be put off till the weekend? It was due over a month ago, and if he has time left w/me shouldn't he finish it?" (text 1) "I'm just curious because I have a feeling he complained that I was 'so mean' yesterday when I made him work on it"

No response. I tried to call her first. Nothing. Alright Jeanette if that's the way you want it fine by me. I will stop giving you sympathy when you complain that your kids don't listen, when you complain that all he does is play that video game, or they have attitude, or they throw a tantrum when they don't get what they want--- you know who throws tantrums Jeanette? Two year olds. Toddlers. You have two teenage Toddlers. They eat candy before dinner, they expect you to do everything and anything, they don't know the first thing about responsibility, and goodness, watch out if you get stern with them - bring on the waterworks!

Jeanette, all you're doing by letting allen push the project off AGAIN, by complaining to you that I was 'mean' is showing him that you are a pushover. He now has control over this situation; over you! I hope you know what you're getting into. And I hope you're praying for your kids everyday, because you are leading them down a terrible path. Watch out when Emily starts driving, who knows what kind of drugs she'll get into. (Oh yes J I said DRUGS, she was talking about alcohol the other day with Amelia, lovely isn't it? 8th grade and wanting alcohol)

And if you think Allen doesn't listen now, good luck later. It will only get worse. Stop making stupid excuses and set some boundaries. You are their mother, so you should start acting like it. SOON.

Phew. And now I need to go to 'work' where I refuse to do anything. Allen can do whatever he pleases I will occupy myself and just make sure people don't die.

Or you know what, I will make you feel like a bad person J. Evil, yes, but sometimes you need a slap in the face. I will clean your messy house for you today so when you come home you will feel like a jerk.

And if you come home, and confront me about my message, be ready to cry because I will dish it out honestly and completely. You need a good cold dose of reality, because you're still living in this fantasy world of yours. Well wake up Jeanette, wake up.

The end.

New Windows, Rise and Shine!

2010-05-03T11:35:00.001-04:00

After going to bed around 3 am. Kyle and I both rose from the dead around 7:15-7:30ish. If you count that is about 4 hours of sleep, eek! Not too healthy, but sometimes you can't help it.

the reason I was dragged out before noon, was the fact that we are getting new windows installed today. FUN! My poor ferret babies and their poor ears. Not only do they have to be couped up with everyone running around them, but their little ears are sensitive to the high squeals/pitch of the drills, and the creaking noises made by using a crowbar to remove the old windows.

Speaking of which, all 4 windows were removed, and the apartment has never been breezier! haha go figure, with these huge HOLES in the walls. But what boggled my mind, is that they left these holes for quite a while, while they took out the other windows in other apartments. All this time with huge gaping holes in my walls, let a lot of pollen, dust, not to mention BUGS in my house. AND the window ripping down, caused dry wall to be distributed in the air lovely, and cover the carpet/futon/all my personal belongings -- great! And to think we just cleaned up yesterday. HAHAHA jokes on us. oh well. The new windows look nice at least. Hopefully they'll save us some heating/cooling bills. =)

They are very nice white vinyl windows and they are finishing the final touches, the edging. Phew and then I can nap. I can't nap because I don't want to even close my eyes with 3 strange, overweight men in my house, no thank you!

That's all for now.

PS Kyle is being more sensitive about meds lately. He even went and picked up allegra!

Amoxicillin for Kyle

2010-04-29T22:49:00.002-04:00

**Warning I drop the F-bomb quite frequently in this post, as it's not a cheerful one, but more of a rant of sorts. ***

I hate, hate, HATE, when Kyle complains of something and then poo-poo's any suggestion I have to make him better. He has a headache "take some tylenol" not that doesn't 'work' for him. He has sinus congestion, 'take a decongestant' nah- he can't be bothered, or he doesn't like 'taking pills he doesn't have to'.

Well, this week he got a lovely sinus infection. And surprisingly, he went to health services before I nagged him too, or before he was shooting black snot out his nose like last time. The Dr. wrote 2 prescriptions, one for amoxicillin and the other for allegra. Now, I know, allegra is 'just an allergy pill' but if the doctor wrote it he must have a reason behind it. Did kyle bother asking what that reason was? Oh no, he just took the prescriptions and went home. Then he decided he wasn't going to fill allegra. Well I bullied him into it.

Cvs then decided to make my life harder by telling him it would be 42 dollars to fill the allegra. Cheapo bastard decides yup, he certainly doesn't need it because it costs more than a dime.

I HATE HATE HATE this. How can he be in my face ALL the time telling me, take this, do that, do the vest, work out, eat this, blah blah blah. When he won't even take a fucking allergy pill?! And everytime he says his stupid little "I don't get sick, I'm the evolution of man" I want to fucking punch him in the goddamn face. I want to break his nose. Rubbing it my face that he doesn't need a single fucking pill to get over whatever ailment he has, whereas I can't even EAT without taking something. It's bullshit. And it hurts my feelings. He's being insensitive whether he knows it or not.

Every single time I suggest something he doesn't do it because he 'just doesn't like to take anything his body wouldn't need' FUCK YOU! If you're constantly sniffling, blowing your nose, and sneezing take a goddamn antihistamine and stop bitching about your nose to me! Every time you can't sleep and I suggest you take sleepy medicine and you poo-poo it, or you 'claim' it just 'doesn't work' go fuck yourself, and stay awake forever and see if I care! I'm done. If you want to play that game, I've fucking had it. Hear me kyle??? I'm done! How dare you parade around me with one little amoxicillin to make you all better, and say "but honey, see? I just took an antibiotic AND a sleepy pill" FUCK YOU. Pisses me off, and you've left me really hurt. I don't even think I can sleep next to you tonight.

Sorry this was a rant. Nothing productive about this post, but no one actually reads anyway so my blog still fulfills its purpose of useless ranting about meaningless things.

Nothing to do, again.

2010-04-26T23:14:00.002-04:00

So here it is 11:14 pm and I'm blogging again. Usually I'm lucky if I can remember to blog once a month, never-mind twice a day. But I'm hooked up to the vest doing a neb, and I feel emotionally drained. I just don't feel like doing anything. I have no motivation. I just don't see where I'm going, or how I can get there.

I still have no friends down in Virginia. That's a bummer. I love kyle to death, but it hurts not having a girlfriend to talk to, or shop with, or eat out for lunch with. And I really have no way of finding such friends, not working or going to school. So basically, I'm pretty lonely. I live on the internet. What type of life is that? It's not very fulfilling, it's blurry, pixelated, and the noise level varies with each youtube video. It gets old fast. There's only so many things I can check: facebook- exhausted, CF.com -- exhausted, all the blogs I follow -- done, email? ha! like I get emails. =\ School email? Nope not in school right now. Craigslist -- sad to say but I've looked through everything...twice.

Where does it end?! The madness. Life is too short to be bored. But it's also too short to do something you don't want to do. I just can't figure out what the heck I want to do, in the moment. Right now. Something non-permanent, so that when more permanent things come about I can be ready for them (think kiddies).

Gah I don't know why I do this. I just am never satisfied with what I have, what I'm doing, or rather, my life in general. I just feel so lost all the time. I put in so much effort to stay as healthy as possible, but for what? I'm not too sure. As of right now, its so I can check facebook 400 times a day, and read/live through other people via their blogs.

And now that I've vented and whined pretty successfully I'm going to bed, where at least dreaming isn't so bad.

Catching a Break, or my breath, either one would be nice.

2010-04-26T12:36:00.002-04:00

I just can't seem to catch a break. Day by day I'm becoming more miserable. Less motivated, more tired, and can't forget the ever persistent cough cough cough. Living like this is almost unbearable and I can't even begin how people like my sister manage. Awaiting a lung transplant lungs barely working on their own. In reality, do I really have the 'right' to complain?? I hover between 50-65, on Really good days --which are far and few these days, maybe 70. So how come I feel so miserable?

I dread waking up in the morning because I know the peaceful breathing I enjoy in the first minute or so of waking up, is over all to quickly and so begins the day of coughing, throwing up, sweating, coughing coughing coughing. Oh and can't forget sniffling. And snorting, and buggery slime everywhere. You think that description is gross, try living it!

It's almost one and the only thing I've managed to accomplish today are the following:

Vest
Cough cough cough
Throw up in a cup while doing the vest
cough cough cough
go through half a pack of tissues
Finish vest
Do Inhaled meds
check facebook while nebbing
Pay off credit card (finally something productive)
Refill prescriptions online
Wash dishes in the sink (2 pans 6 things of spatulas&cook handles)
Load dishwasher (few bowls and silverwear)
cuddle with the Furbabies (aka the ferrets)
Cough cough cough & throw up
Sit and write this blog entry.

Gah. Seriously, that's it. I've been up for hours. I also managed to get dressed, which kyle always is telling me doesn't count as an accomplishment for the day, but what does he know. For me it does! So boo to you kyle, boo to you.

I have about 4 more important things to conquer today and then whatever else I can do is extra.

Return Library Books
Mail off Package to Mom, Jpie, Laurel --who's now known as crash due to her first day of driving lessons, hilarious story for a different time--, and miss Stasha. Nothing for Ron or little Kyle. They will get something when they visit in July.
GO to Rite Aid to drop off diabetes stuff. (hopefully my insulin pens will be covered by insurance, if not oh well syringes it is)
Lastly, go to work. No biggie here, I just lounge and watch TV for a while and eat a mini snack pack of doritos and drink some lemonade.

Wish me luck. I only have 2.5 hours to accomplish these things before work arrives. Now if only I could stop coughing long enough to put my hair in a ponytail we'd be good. Sighhh. Just can't catch a break, can I?

And now I'm done feeling sorry for myself, and ready to tackle these tasks as best I can. Usually the car ride distracts me enough my coughing slows down.

And Now for some cuteness:

GOOSE!

And Duck Duck!!

Week by Week, Day by Day

2010-04-22T19:03:00.002-04:00

Wow, where does time go? It seems to fly by when you least expect it to. But yet, when I reflect on my days I haven't accomplished anything. At least anything significant. I extended my school break till may 31st, which will be the maximum of 5 months off. Hopefully by May 31st, I will be under the "Michelle Law" with my mom's insurance so I can have a whole year off without consequence or insurance drop. And then within that year, I hopefully with receive medicare/medicaid -- if the friggin people will ever set a court date for me. (so frustrating but that's another story). Even with this "plan" in place. It's not much of a plan. No goals, no finish line, no nothing. It's a little disheartening, seeing as I don't have any direction in life, and basically have decided that I'm going to be financially dependent on other people for ....well... my whole life? Granted, I don't WANT to be dependent, but I just can't seem to find a way around it.

I've run over the options so many times in my mind, and there just isn't one that seems 'right'. I can continue in school, eventually graduate ( I technically would be a junior in college right now, but now that I'm doing school online, and have taken this break I wouldn't graduate until at least 2012.) so after eventually finishing school, I can teach. Teach? Seriously now, what was I thinking?? Yes, I love kids, but no, I don't love their germs. And teaching is so much work, both in the classroom and outside of it. My mother was a teacher for 3 years and was so terrible at it she quit -- before they fired her. haha. Plus being sick all the time, and coughing everyday--all day. I would only get half as much material covered as regular teachers, and that is unfair to the kiddies. But it would provide the health insurance needed, and an income (not much of an income but money nonetheless.) However this is the plan I dread the most.

Plan B: Finally recieve Medicare/Medicaid and find something to do with my time. With the most stressful things covered (healthcare coverage) what to do as far as income. Well this is the best (and this is sarcasm) thing about getting government assistance with healthcare, you have to be dirt poor! So nothing in my name, no finances to my name, and certainly no 'real' job. Less than 750 a month to continue coverage for federal, nevermind the state limit. Even with a small part time job as a barista or something some silly teenager does as their first job, I can only work for a maximum of 5 years with my 'ticket to work.' Then after 5 years you're kicked off. Granted, you can easily get right back on should you get fired for so many missed absences (cough cough hospitalizations every other month for 2 weeks at a time) but still, what a hassle. So with medicare and medicaid what the heck do you do with your spare time. Even now, with an under the table gig of babysitting after school, my days are boring and repetitive. I live on youtube and facebook. I finally discovered boggle online so now I'm exercising my brain a little, but come on you can only boggle so many times before your hand cramps. And there are only so many stupid youtube videos you can watch, and even movies online usually have a time limit (thanks megavideo for my 72 minutes of video today).

Plan C: Oh wait I have no idea what plan C is. Plan C is my 'dream' rather than an actual plan. Kyle will finish Grad school and land an amazing job, preferably with the government, and he'll have at least a 20 year contract, and with that contract comes amazing insurance. So we could legally get married and I'd be covered under his insurance. We'd buy a nice house, with a huge backyard overlooking some mountains (because the nature boy I just married is obsessed with mountains or something) and we'd get two amazing puppies, a husky and Australian shepard. Then magically one day I would realize we're pregnant and my pregnancy would go smoothly for 39 weeks (I'd be a week early because of 'cf ' but that's the only problem ---haha I told you this was my dream!) And then I can be a stay at home mama, and do what I do best, love and care for little angels. And then a few months later after my little baby is born, a cure for CF would be found and all my worries would melt away! Tada!!!!!!!

So Plan C would be awesome but I'll settle for plan B mixed with a little of C, or most of C. Anything from C? gah.

I can't even remember what started this. Oh right, my pointless days. I honestly have no direction in life. It's so unnerving, dissatisfying, and honestly stressful. Needing something to do with my time, especially if I am able to get under the Michelle Law (which I don't seem being a problem, my new CF doc is awesome and he'd gladly write me anything I needed.) that I've been brainstorming what I could do to A. make a little extra money, and B. not die from boredom.

Well, the other day I settled on trying to make some nice sets of cards to try to sell on Etsy.com. Before that I had been thinking monogramed onesies or bibs, something for babies, as that would give me an excuse to shop for baby things. haha so bad, I know. But I still haven't figured out how to embroider well enough on my sewing machine. I did however manage to get it back to the english language. Not that I didn't appreciate the german or anything like that.

I thought about trying to make a cute set of 'thank you' cards related to CF in a way, because I thought it would be nice after all the walk-a-thons going on for people to have a cool thank you to send. I tried to make a pair of lungs type card, and well, I found out very quickly I can't draw lungs for sh**. hahah. But I tried. So CF thank you's are still in the works, we'll see if I can think up anything cool or exciting.

Speaking of lungs, Miss Jess is doing awesome with her new set of breathers. Yay! And my sister finally agreed to double list and is getting the ball rolling with Cleveland Clinic. I just pray and hope she doesn't back out once it gets 'tough'. She's the epitome of laziness and I know if extra work is required to double listing, she will kiss those lungs goodbye. Sounds crazy doesn't it? Well, that's because it is! Unfortunately, she can't see that. =\

Alrighty, thats about it. Oh except for the fact that my vest machine broke, and I got a new machine from hill-rom (yay for lifetime warranties!) and NO WONDER I didn't think the vest did anything, mine DIDN'T! It didn't even have enough power to make my tubes whistle. Yes, apparently my tubes had quite a few holes from puppy teeth/ferret teeth, and when I put them on the new machine you could have sworn there was a train a-comin! haha, so yes the machine was a dud. And the new machine! WOAH! It's awesome. It's cut my coughing down by at least 30-50%. Not even joking/lying. The second day of doing the new vest my chest hurt because it stopped all my 'coughing for 5 minutes only to get mostly spit up' and changed them into 'cough only once-twice every hour, but cough up some deep nasty junk that you know is gross'. Fine by me. Get it up, get it out, get it GONE.

Speaking of which, it's vest time now. =) And if you made it to the end of this, then you deserve a prize!

(And in future reference if I ever stop making sense or my entries are all over the place, just know that I don't believe in 'proof reading' I just write and click publish. haha. Sometimes I go back and reread them after the fact and all I can do is laugh at how poorly the ideas are connected, or spelling mistakes, or randomness. )

Not feelin so great.

2010-04-14T14:57:00.002-04:00

Boo Cf BOO! I try so hard, and yet no matter what I do you still attack full force. BUT like Kyle always says, looking on the bright side, think of how sick you'd be if you did NOTHING. so true. Thanks for being my voice of reason. It is this voice which is why for the past week I've strapped myself to the vest and inhaled salt water on multiple occasions. Just in the hopes that it will send whatever is growing out, or at least slow it down. And now the song I like to sing; it goes a little something like this--

Fever Fever go away

I want to go outside to play

and infact I wouldn't mind

if you didn't come by all the time!

oh well. gotta do whacha gotta do.

So other than being a bum and feeling fevery I haven't done a single thing. Although I did fix my sewing machine and the language is now back to english. phew. Also I tried to embroider a little, but it's so complex that I think I need to break out the manual. =\ Not an easy feat seeing as this manual consists of a 4 inch binder that's half my weight. haha. okay. that's all for now.

90 in April

2010-04-05T22:34:00.002-04:00

Phew. It was hot today. 90 degrees, and it's only the first week of April.

Not much of a productive day. Skyped with Jpie and Dad and the Mom came in so I talked to her for a few minutes before the pie kicked me off.

I did a lot of working out today. Although I skipped zumba --shhh don't tell kyle -- then felt guilty for skipping zumba, so I did extra pole work today. I got a new move down and almost had another move down. Both two are advanced moves. wahoo. I'm just so sore from working so hard the past few days and I do have a few bruises. Oh well. It's super fun and is building muscle.

I had absolutely no appetite today and I'm just waiting till my period is over so I can start megace again. It just messes up my cycle SO horribly I decided instead of freaking out over a missed cycle I would wait to take it till after my period is through. So any day now would be nice. haha.

But speaking of eating, I know part of the problem is that there isn't anything appetizing that I want to eat. Especially for lunch and breakfast. I need to get some frozen stuff asap. And milk. we drink so much friggin' milk. Almost a gallon a day. How ridiculous!

Alrighty that was just a quick update. The kids are in Greenville so I don't have to work for a few days. cool I guess, but that also means no paycheck this week. boo. oh well.

And now my latest obsession is calling: soup at hand! dun dun dunnnnn (so quick so easy so delicious too bad they don't make a high fat/calorie version for us skinny minnies)

THE END

ADayofNothing

2010-04-03T21:25:00.002-04:00

The title says it all. A day of nothing. Although I did clean up the kitchen because it was 'rendered useless' as kyle says. By myself. making fondant. or attempting to. sigh.

then we went to target and got the most bootleg kitchen table. It's a card table that folds to store easily. It was only 30 bucks and looked more sturdy than the 100 dollar 'wood' table anyways. Eh we'll just keep the table cloth over it.

We took the ferrets outside today. Duckie freaked out, she started to play and hop and go crazy, but we weren't sure if she was excited or scared because her tail was puffed out. so to be on the safe side we brought her back in.

OOH and the apartment complex sent us a letter saying. Please move any furniture away from the windows 3 feet, so that your windows can be replaced. Well when do we need to move our furniture you say? here's the kicker. Anywhere from April 5th to April 31st. We don't know when they are coming, and they're not giving us anymore advanced warning but that. AND if our furniture is not moved, they move it for us and we have to pay a fee of 50 dollars and they aren't reliable for any damage. Meaning, they don't care if they break shit, and they'll still get money to do it.

So where the heck are we gonna move a desk, a futon, and a full size bed to for this month of april. SERIOUSLY? oh and two ferret cages and a kitchen table. Gosh. it really pissed kyle off that they are doing this. And we don't ahve a specific time for the window installation just a "anywhere from 7:30 AM to the end of the work day." What the heck does that mean, and furthermore I'm still SLEEPING At 730 am!!!! Well only time will tell how this is going to work out, but its a good thing we're getting new windows these old ones are crap.

NOW ITS DATE NIGHT.

thats all for now.

To plan or not to plan, that's the question

2010-03-31T23:16:00.002-04:00

Today was a day where nothing goes as planned. Granted I hadn't planned to do much today, but everything just kinda went awry. I woke up later than planned, of course, but not too late. Round 9:15 or so. Got a late start, but I managed to do all my meds before going to my 10:30 class --which I was about 10 minutes late to because someone didn't understand the speed limit was 55 not 25... grrrrrrrrrr old people driving. GAH.

Then I didn't eat breakfast so that threw me off, but I went home to shower, then by the time I was showered, dressed, rounded up the ferrets it was lunch time, and I rushed to Dunkin Donuts (sort of the plan for breakfast...) then I had to pick up Emily for her ortho appointment then I was supposed to drop her off at school again but we went out for chinese food afterwards, then I dropped her off for choir. So she got to skip science. Points for Beth. Which is good because I had been getting in her trouble the past couple of weeks.

Then I went straight to the house so Allen could eat the leftover chinese because he stayed home AGAIN from school. That little faker. "Oh *FORCED COUGHING HERE* I'm siiiiiick. " Bologna. I threw in some laundry, watch a couple episodes of shear genius. Allen didn't want to do anything with me. BOO. Not even a bike ride. AND it was gorgeous out today so I was a little upset but hey if he wants to play the 'sick' card and play a video game all day for 3 days I'll let him.

I was supposed to go out to dinner with Emily&Allen&everyone but I was feeling "off" and it just didn't seem like a good idea. I had done any insulin all day, barely checked my sugars, but they were all normal levels each time I checked so I have no idea what was going on, but I just didn't feel 'right'. I felt icky all over, but nothing in particular. SO bizarre.

Ate a little pasta at home while obsessing over puppies in the area =( Wanting a puppy so badly it hurts. But we decided that we'll get a puppy when we move away to grad school, because we'll rent a house with a yard or that's the plan, but as we learned today plans don't necessarily work out the way you PLAN THEM TO. hahaha that made me chuckle.

Skyped with Juliepie, she's doing better. Thank goodness. Read my post on the CF forum. but I wrote a PS to her on it so she didn't take it the wrong way or anything which is good.

Still coughing a little more and its making me a little nervous but thankfully clinic is on friday so maybe we'll just continue antibiotics? Who knows. It's all just a game. You get good chunks of time, and not so good chunks of time. I just wish the good chunks lasted longer.

My goal for tomorrow is to mail a letter to Gen & Ty baby. =D I wrote them this 3 pager today while waiting at the ortho and I'm excited to send it off. A nice little surprise for them.

Oh and I looked up pictures of RI's flooding. EPIC. I've never seen so much water in the state before. It's absolutely insane. Glad I had sunshine in sunny & warm VA. Yay for an actual spring time, and not rainy rainy dreary FLOODING RI. hahaha.

that's all,

Beth

Just Dial and Call...

2010-03-29T12:25:00.001-04:00

Phew. So our sink backed up yesterday. We flipped the garbage disposal on and it started to come out the adjacent sink. Talk about gross. Kyle left me in charge of calling the front office so maintenance can come by and look at it, but I was chickening out every single time. I had no idea if that was protocol -- to just call them and have them come 'fix it'. But finally I sucked up my fears and just dialed the number and hit send. no turning back now. I fumbled in the beginning sputtering out my name and apartment and rambling on about my broken sink, and finally managed to ask after gasping for air "can you send someone from maintenance? maybe they will know what to do?" and after all my rambling and going on and on and fretting I get a "sure thing, bye"

And that was that. Now we just wait for the maitence man and all will be glorious and then I will be able to do my dishes once again, and run the dishwasher. Even better.

OH and my lovely roommate (or rather exroommate now) Fran is coming to visit for a little bit. She was in VA beach and she, craig, and jared are swinging by on their journey home. (They took a road trip for spring break, how fun!)

That's about all today, except I managed to stick it through the whole zumba class. Granted towards the end I was half assing it and skipping moves here and there, but you gotta do what you gotta do. =) I'm still proud of myself. Go me!

One year down, 9 more to go...

2010-03-28T23:24:00.002-04:00

I turned 21 on March 19th. It wasn't much but it was a birthday. It was a gorgeous day so that was a plus. The night didn't turn out exactly, or anything, like I had planned but it was still nice in the end. I spent it with kyle watching home movies. Nothing exciting --I know, but it was nice nonetheless.

So I haven't written in FOREVER. Gah. I always do this. I say I will write more, 'everyday, I swear!' then everyday turns into every few months or so. Everything has been going very well in my life lately. But let me back up to November where I left off. At the end of October I got out of the hospital feeling great for about two days. Then after about 4 days I was hacking up a storm, throwing up again, running fevers. It was up-surd. I chalked it up to catching a cold the kids brought home. Well, I went on this antibiotic, and that antibiotic, and did this, and that, and nothing. NO results. I was still sick. I was miserable. Moody, Gross, Sick. I went home for two weeks with kyle, and those two weeks were miserable. I couldn't do anything. I had a breakdown because I wanted to go sledding with everyone and I couldn't bring myself to go because I knew I wasn't going to be able to walk up the hill. I was at a real low point. As soon as I got back to Virginia I packed a bag for clinic, and was admitted. I stayed for 2 weeks, and I started to feel amazing again. My fev1 hit the 70's! But then dropped back to 67, ah well, what can you do. But this admission my bloodsugars were in the 400's! EEK. I started receiving insulin to calm things down while on steroids. But after the steroids were done my sugars were still going high, so the endocrinologist had the 'talk' with me, and sent me home with a crash course on diabetes and doing at home insulin.

I was terrified, to say the least, to leave the hospital. I sooooo did not want to go out into that nasty world with all it's germs, because I was afraid that I was going to have a repeat of October. Well, eventually they kicked me out, haha literally my Insurance was none to thrilled to have me stay all 14 days. hehe they called on the 12th, and the 13th day of my stay trying to kick me out, but my Docs had my back and put them in their place. Thanks doc!! =)

Well, I was feeling AWESOME when I left the hospital, terrified, but awesome. I had finally gained some weight (about 10 lbs!!!!) and was able to climb stairs, walk without huffing and puffing, and I was mentally soaring.

While my life was going so swimmingly, my sister's was not. She was having a hard time in the hospital back home, so I flew up to be supportive. Let's just say I won't be doing that again, not only was I not appreciated and ignored, but after all my stressing and anxiety to get there, it was not worth it, and I caught a cold in the airport coming back. Lets just say I will not be flying ANYTIME soon. They are just bad news all over.

FREAKING out with this cold, I went to clinic. They said not to stress too much, but if it got any worse call sooner rather than later. 5 days after the cold symptoms were gone, but I was still feeling like poo I called and went back to clinic. BOOM antibiotics, still freakin' out. This was October all over again. BUT this time, I felt different because I knew I had caught it before it was too late. I was just begginning to get sick, rather than being sick already, so I was hopeful that the antibiotics would do their trick and kick out those bad buggies. Sure enough, three weeks later and I'm feeling great!

Now some tidbits to get you up to speed on my general life:

*I joined the YMCA and have started taking Zumba, Hip-Hop Aerobics (SO FUN) and turbokick. They give me something to do during the day and make me exercise. I'm also hoping to find a friend out of this deal. But we'll see about that one.

*I now have 2 ferrets! We got a female ferret and named her Duck Duck (so now we have Duck Duck and Goose. hehe) although she's quite a whimp. Goose will try to play with her and she'll just chirp away (she makes a ton of noise, which is unusual for a ferret) and play dead. Sigh, she'll eventually learn. She's super cute and loves to cuddle!

*I started to volunteer at the animal shelter. Again more exercise. And it cures my puppy desires. I just go and walk some doggies and then fulfill my desire to have a puppy and go home. haha it's a great system. They like the attention, I like the attention, and I don't have to worry about them chewing up my shoes.

*I haven't heard anything about my SSI case, which is pissing me off. It's been 6 months and then some since I've filed my last appeal -- the one before you actually go to court. So I've been sitting around for 6 months waiting to hear that I have a court date... but no such luck. Nada. GRRRR.

*I took a break from school. Which is really nice, because I detest school with a passion. Unfortunately I can only take the break till April 30th, and I start school again on May 1st. Bummer. And have to continue with school until I can get SSI but seeing the pace as that's moving, that will be NEVER. GRRRR again.

*the weather in VA is getting really nice. It's awesome to have an actual springtime. The trees are all in bloom mode, the ones with flowers are so pretty. Lots of different colors: pinks, whites, even purples. Although the white ones smell like dead fish, a little less pretty.

Hm that's about it.

Maybe I'll write tomorrow, who knows, maybe I'll write next month. Can't say?

I Just need sleep... right??

2010-02-02T23:46:00.002-05:00

Please tell me it's not over. I don't want it to be over. I love it, I need it, I do so well with it. I can cope with mania, I can deal with mania, I can live while being manic. I cannot, however, deal with being depressed. And I think tonight I will pray (thinking of you Mr. Sexy Chaplin who literally saved me from a mental breakdown in the hospital last week) that this mood is due to the not sleeping in 48 hours and the high stress and anxiety level. Tomorrow is a new day, and I know it will be a good one. I can make it a good one. Just believe. =) And now -- to bed.

Insert clever title here

2009-11-01T20:31:00.002-05:00

I'm stressed out. I just got out of the hospital around one week ago and already I am running fevers, throwing up, coughing my lungs out-- the same old tune. Not a song I want to be singing right now, let me tell you!

I also have a TON of schoolwork to do, and yet I cannot for the life of me, sit down and make myself do any of it. I think I will barely get by this semester. Unlike my boyfriend who goes to school and does work, comes home and does work, eats, does more work, then goes to sleep. I swear all he does is work, all the while I'm over here lolligagging. Which then makes me feel even worse about not doing work.

Thanksgiving is soon and already people are asking me about christmas. which reminds me of the fact that I need to get some serious presents. ESPECIALLY my sister, because I forgot to get one for her graduation and her birthday. oops!

Well that's all I think I came to rant about. the end.

Rainbows and fresh starts

2009-10-25T00:51:00.003-04:00

Today was such a great fall day. It was on the warm side, with 81 being the high, but had such a lovely breeze from the changing trees. All in all it was awesome. Today, ultimately wasn't about myself. I helped out someone else in need. I gave my attention to someone who wanted it. I put my life on hold for a moment to be a part of someone else's. I do miss being home, but I feel like family at Jeanette's. And with real family being 9 hours away, I'll take anything I can get, but boy did I get lucky. Maybe there is a god who brings people together for certain reasons. Right now I do believe that we have been brought together at a time where we can lean on each other. And that is very comforting.

On the CF aspect of things I went for a bike ride today(which I would like to say I saw the most amazing rainbow strewn across the sky) and boy, was I huffing and puffing after a while but this time it felt good. I felt like I was enabling my body to keep going, it was so motivating. I always struggle with motivation and I think it has to do with my emotional status. If I am emotionally satisfied I become much more motivated, than when I am emotionally struggling. Lately I've been emotionally satisfied, and even pleased.

The world is so much prettier when all your pieces are fitting together nicely.

Learning to love

2009-10-24T00:11:00.002-04:00

I learned a lot today. I am out of the hospital with a lung function around 69/70%. I'm staying with the woman I work for (I babysit) until my kyle has gotten over the flu. Jeanette (technically my "boss") has taught me a lot in the few months that I have known her.

She sees a strength in me that I sometimes struggle to see myself. She uses the word 'brave' to describe my battle, and 'positive' to describe my fighting tool. Now, I have never thought of myself as 'positive' in any way before but hearing her describe the light she sees me under almost makes me feel guilty. I feel like I'm cheating; being someone I'm not. I would love to change and be that person she describes and sometimes maybe I am that brave, positive, strong person she describes, but other days I'm only human and I hurt, cry, and yearn.

Today the tables were turned and it was not I receiving the positive encouragement, but rather doling it out. After a long, very hard and stressful day my Jeanette returned crying. Even through tears I could see her strength, her bravery, and her positive perseverance. My heart cried out to her to see her hurt. And it was then I discovered we all need love. We all need to learn how to be loved and how to give love. Today I gave all the love I had in my heart to this woman I've known for a few months. I feel like family and when family hurts, you hurt. I look up to Jeanette in so many ways. I see her as the wonderful, successful mother I would someday love to become.

I learned a great lesson today and I feel very thankful that somewhere in the universe I was given this opportunity. I know I'm probably sounding like a sap -- but I really feel blessed to have met this family, and thankful for being shown that we all need to love and be loved.

As always,

Beth

2009-10-21T09:42:00.002-04:00

for anyone who has Cf, you know what it's like to know you need help. I needed help. These past few weeks I had just plummeted - mentally, physically, emotionally. So when I went into clinic on Wednesday October 7th I was somewhat aware that I might need to go into the hospital. What I didn't expect was my FEV1. It floored me. My first blow was only 43. My second 47. My third and final blow was 50. Talk about your heart dropping into your stomach.

No wonder I hadn't been motivated, or done housework, or school work, or anything! I was 20 % my baseline. I was sick, and I needed help. Dr. Williams and I agreed that I would come in on monday - that way I would be able to get off of work, pack, tie up loose ends, etc.

I was called to come in around 830 and within the hour. Everyone was so nice and made me feel so welcome and comfortable. My nurses are great and even know how to do chest pt, ensuring I get the correct 4 times a day.

My stay has been so enjoyable while I've been here, again I am just in awe. It's so different than Rhode Island and I love it. I'm feeling great, my numbers are back up to 70/71%!! Which is higher than when they first ever saw me. They fixed my screw up of a stay at jane brown, which I couldn't be more grateful for.

I'm leaving tomorrow or friday, and I can't wait to get back to the apartment and clean, do dishes, do laundry, go play, run around, and dance. I cannot wait!!! This -- when I'm healthy-- is when it's so easy to love life. I feel hopeful, and greatful, and so appreciative that I can actually experience the warmth of the sunshine, and the crispness of the breeze.

for now,

Beth

Social Security: None for you silly girl!

2009-07-24T14:48:00.001-04:00

I hate social security. I hate the process, the people, the deadlines, the excuses, the label of having a disabling condition, but then being denied because you're not 'sick' enough.

What does the government think Cystic Fibrosis is? Something that we can fix? Negative.SO.....

Dear social security,

I would love it if you just accepted your fate in the fact that you must supply me benefits. There is no way you cannot deny me yet AGAIN. and again, oh, and again? If I am not 'sick enough' to receive you, then lord only knows what you actually do accept.

so deny me all you want! I will keep coming back knocking on your door until you let up and give me some money!

Sincerely,
Your 'not sick enough' cystic fibrosis applicant.

Mama Said There'd Be Day Like This...

2009-06-25T18:25:00.002-04:00

Well, here I am. Looking out of my dully, very dirty window, I'm staring at 95. . . in Rhode Island. The past three miserable weeks have built up to this. Coming back running to RI to get some help. A Tune up. It's funny they call it a tune-up, but it really is a tune up.

Since I'm twenty I went to the adult ER. I waited for twelve hours to get a room in a hallway where no one has ever heard of Cystic Fibrosis before. I had a doctor ask me what one of my medicines stood for... it was the name, and it didn't stand for anything.

I'm doing a little better now. I guess I should grow up into the adult world I've been thrown into. I need to just suck it up and grow up with my surroundings. I am grateful that I know what's going on, and that I pay attention. I'm so glad my parents taught me to be independent, along with advocating for myself.

In some ways I feel that my late childhood was tough. I was stuck home alone for two years, with a falling apart family. I had parents who hated each other, and I hated them for it. I had a sister who was drinking her life to the drain, and who was with a less-than-suitable match. I just wanted to scream, run away, anything. I can remember working up to 40 hours at Panera just so I would have to go home. I hated my parents for putting me through that. Finally I grew up, and you learn to forgive. You never forget, but you forgive.

I need to start forgiving. I need to forgive the nurse who doesn't know what tobi is, or the nurse who doesn't know I need 8 enzymes. I just need to start forgiving and letting things go. I tend to take things too personally, it's a flaw that I find most frustrating. I need to let things go. I need to let a lot of things go, but it's so hard sometimes teaching yourself something that feels so unnatural.

I was talking to my father today about being bi-polar and on medication. I explained that I can't figure out who I am because I'm on medicine and I miss the mania. I miss the fun, the excitement, the giggling, the energy: I miss it. I can't tell if my personality is more dull without mania or if my dosage really isn't correct. It's such a fickle thing.

I am thankful that I have people so special in my life, helping me through this tough journey. I would be hopelessly lost without those I love, and those who love me. I would be drowning without a helping hand to pull me out. So, thank you for all those times you saved me without knowing. I don't say thank you enough. I love you.

That's all for now. I only have 5 more days in the hospital then back to my love and the wonderful virginia weather. =) Back with a new attitude and a new outlook.

Lost: my FUN, if seen please return ASAP

2009-06-17T23:12:00.002-04:00

I used to be a goofball. I used to crack up until I fell off of my seat. Where did that girl go? How come I can't seem to find her, and all I can come up with are Debbie Downers' and Negative Nancys'? I understand life isn't supposed to be easy, and it isn't supposed to be fair, but not fun? Life should be fun. All I want is my fun back. I lost it somewhere along the way, whether I lost it in medications, exams, or friendships, I want my fun back. I'm having a very hard time staying positive when I can't even find a little fun.

I know I'm not feeling well, and it probably doesn't help that the psychiatrist gave me expired medication -- thanks doc ! -- sigh. But, nonetheless, I"m bound to take it every single night, becuase without this stupid yellow half a pill, I might breakdown and decide slitting my wrists is more important than fighting through this fun-less cyclone. Or better yet, I might go manic, and decide I'm above everyone else and go on a sticky-fingered rampage through my favorite stores.

Most of my life that I can remember well, I have been -- apparently Bi-polar for. Thanks fam. for not letting me in on that! Naaah don't worry it won't screw me up or anything. Now, I can't seem to find who I am. I don't know who I'm supposed to be with medication. Am I really this anxiety ridden worry wart? What fun is that to sit next to, it might be contagious.

I want to giggle again, make stupid faces, laugh until I pee. I want my family to be more supportive for me, and I want a job that I love. I want so many things out of life, but most importantly I don't want any of them if they aren't going to be fun. I want my fun back. So if anyone's seen my fun, please return it to me?

Days like these...

2009-05-20T22:54:00.002-04:00

It's day's like these where I feel tired. Just plain old tired. It's days like this that make me wallow in doubt. Was I really supposed to move down? Is he really supposed to love me, or did I manage yet again, to mess up his life? I am just a selfish person?

These are the days where I feel like a screw-up, a mistake: a defect. What's my life plan? Why am I here? I wouldn't be here if it weren't for medicine so why am I here? And then I feel guilty. I look at kyle and all I see is love, but what kind of life does a 19 year old have loving a terminally ill girlfirend? Someone who's just going to leave him and who needs so much. What possesses him each day to continue to love me? I wish and pray everyday that I can be as strong as he is, somedays I can't even deal with it and then he goes about like a normal loving day. Where does he get his strength from?

I hope I can grow old with him. And give him as much love as I possibly can. I hope he knows I have good days and bad days, but I love him all the time. I hope he knows I want to try and fight but sometimes it's too hard. So I hope he will understand that I need him.

Kyle, I need you

Moving on Up (In this case down)

2009-04-13T02:19:00.006-04:00

I am moving to Virginia in 19 days. That's right 19 days. Kyle and I get our apartment in 20 days!!! I am so excited. So I called all the places around town renting and asked them all a million questions and we were able to narrow it down to 3 places. I sent him out looking at them and he came back with our apartment. =) 2 Bedrooms, 750 square feet, central air/heat. . . It looks nice. It's priced nicely too at only 699/month.

I am very excited, but I have to admit, I am a little sad. There are things that I know I will miss when I move out of Rhode Island, and the main thing I will miss is the beach. Being a little Rhode Island Girl, with grandparents who lived within walking distant of a private beach.... you could say I was spoiled. Just a little... ;-) I'll miss just the vastness of it. Especially in the wintertime/fall/spring. The times no one bothers to acknowledge it's beauty. I think that is when the beach is the most beautiful. So I know I will miss my beach when I'm down in Virginia. But I'll be with my baby!! It's all worth it.

Moving is tough. I have to go through all my things and see what I have and what I don't use and what I'd want to take down, etc etc. Luckily, my mom is moving, so I have free dibs on any of her furniture/anything. She's moving in with her boyfriend, so I even get a pick from dishes, pots/pans, vases, you name it I can take it.

This is definitely an exciting chapter in my life. A brand new start, and I cannot wait! I am also excited about going to a new CF center down in Richmond, VA. I think this is a great opportunity to really advocate for my health. I do feel limited at my current clinic, because they have known me for so long. I switched over into the adult clinic a few months ago, but I am still well-known as it is a small clinic.

I think the move will open so many opportunities, and experiences. I think this is the best thing for me right now, and it's my life is all starting to fall into place. I was talking with Kyle's parents the other day, and I had mentioned that, and his father said "that's how you know it's meant to be, it just falls into place." Which is 100% true. You should never fight something, what happens is meant to happen, and if something is falling into your lap, whether it be good or bad, it's meant to be. And this is meant to be.

So goodbye Rhode Island and your gorgeous beaches, and HEEEEEELLLOOOOOOOO Virginia -- with your hot summers and fantastic everything else! =D

Scrap Crap

2009-04-13T02:08:00.002-04:00

I am addicted to scrap-booking. I knew I enjoyed scrapping in high school but now I'm addicted. I just don't have anything to scrap about lol. but I found i guess blog candy? It's sweet. Awesome people give you a chance to win some scrapping stash. Like this blog.

oh, thats about it, besides the fact I feel terrible today.

A case of the Blahs

2009-04-05T23:19:00.002-04:00

So do you ever have those days? Where you are just blah, and everything seems so blah? That, my friends was today. Today was absolutely beautiful outside, but I just couldn't being myself to do much of anything. I was just so blah.

I did get gas today, in cumberland picking up pepper spray. (don't ask). While doing these tasks I got hit on, a lot. Which is sometimes flattering, but today it was just odd. When walking into ACE hardware I got hit on by the counter-boys. No biggie- that was expected, a silly girl going into a hardware store for mace, what can you expect? But then I was pumping my gas, minding my own business, when a group of boys on their motorcycles decided they needed to get gas too... right next to me. And they also decided they needed to chat me up. Thanks. I was polite, got my gas, went inside to buy a drink, came out, about to get into my car and "Excuse me..." *sigh here we go again* . A car of boys this time, pull up asking for directions. Clearly they know where they are and where they're going but they were actually cute so i decide to play along, HOWEVER when playing along, I immediately say "take a right, (and it's a left) and it will be on your left (WRONG it will be on your right) hahaha Sooooo I realized that, laughed and corrected myself feeling stupid. Sigh. You're not supposed to feel stupid when being hit on, you're supposed to have higher self esteem not lower. Gosh what is wrong with today; it is just a blah day.

I had ambitions for tonight, but tonight has been blah. And I haven't done a thing. Oh yea, it's definitely a case of the blahs. Well, hopefully tomorrow will be a better day.

Clinic

2009-04-03T01:46:00.003-04:00

I had clinic today. I went because I hadn't been feeling well, and was convinced I needed a tune-up. Turns out I only needed a little antibiotic to kick whatever was growing out of my lungs, and I feel fantastic. In fact my lung function went up all the way to 77! I don't think I've seen 77 since middle school, or the very beginning of high school. Actually in sophomore year I went up to 83. So that's my goal. 83, or better of course. =D Go me.

Virginia is hot.

2009-04-01T05:26:00.000-04:00

Well my title post is so true. In the summertime Virginia is H.O.T. Temperatures can reach well into th 100's and it's always humid. Gross. BUT, Virginia, is where I'll be living for the next two years. And I couldn't be more excited than I am right now. And Guess who I'm living with? That's right, my one-day-future-fiancee. We were able to snatch a 2 bedroom apartment for only 699 a month. Crazy right?

No, that's nothing, what's crazy is that I'm moving in 4 weeks. Count 'em: 1, 2, 3, ...4 weeks! And then I'll be down for 2 weeks until kyle gets out of school, then we'll drive back up to RI and get his stuff the rest of my stuff and I thinkn I will have to just drive back down, becuase I unlike the bum, will need to work in order to pay my half the rent. His parents are paying for his b/c it's cheaper than on-campus housing. But when I get down to Williamsburg, I will be able to set up an interview with a nanny agency and hopefully soon have a job. Go me. Or I'll shoot for being a waitress. I could get good tips.

But for this last month, I just need to survive going to Gen's house, packing, doing school work, and of course dealing with family, and squeezing in last minute visits with everyone. And getting rid of all my crap via craigslist. I should do that tomorrow. But it is tomorrow!! Oh man, It's past 5 and I really should get some sleep. Well that's the exciting news, and that's about it.

Bi-what?

2009-03-31T05:08:00.003-04:00

Bi-who? Bi-shwat? Bi-polar, ah, yes, good old manic-depressive disorder. Well, being 20 I am officially crazy, as if CF didn't give me enough problems already, tack this one on too. haha. Oh well, at least I can laugh about it now. (now that I'm on meds) I didn't think that these meds would make me feel much different, maybe less sad, but MAN! This was probably the best thing to happen to me in a long time--being diagnosed that is.

Everything in my life since HIGH SCHOOL, yes highschoolall makes sense now. All my instant mood swings/ silent aggression, hyperness, wanting to do a million things, to thoughts of death all the freakin' time. Yup all makes sense. I am so glad I finally decided to see someone about my 'depression' because if not, I would have been stuck in this rapid cycle of up and down, bad and great. I was never "normal" I never seemed to have the ability to get things done regularly. When you're manic you feel like you can do 1,000 things at once and starting one thing usually means never finishing it. This also applies to meds. You feel great, so who needs to do meds? Surely not you, miss manic?

But flip it around and it's the same way. When you're in your depression stage you don't feel like doing anything, including taking care of yourself. I've been on the *hopefully* correct dosage of my new med for about a week and I haven't felt this good since before middle school. I finally feel satisfied with where I am in life. I don't feel stressed about the future, my anxiety has gone down, I don't feel overwhelmed and upset at everything. I definitely have calmed my instant anger and aggression down. ALSO I am able to tackle everyday tasks without feeling like they are a hassle, and I can actually finish them. In fact, I did 3 tasks in my 3rd class in ONE DAY! Usually tasks take me a few days - a week to finish. BUT with my meds I am able to buckle down and work. It is amazing.

So although yes i think why do I friggin have to be bi-polar, it is probably one of the best things happening to me right now. If I can learn to control my mania and my depression with the help of some medication, I could really go far. It's been a week, and last week I was calling Clinic begging to go into the hospital, and tonight, right now, I feel like I could run a marathon.

I have been religious with my medications, drinking more fluids, eating better, sleeping through the night (big one here!!) and just overall stepping up. It's so much easier to love yourself and care for yourself when you're mentally sound.

Valentines Day Love

2009-02-15T18:42:00.003-05:00

I drove 9 and a half hours to be with the love of my life for Valentines day. From Rhode Island to Virginia. And I am an anxious driver soooo Driving 9 and a half hours is a big deal for me. I only stopped twice! And not to mention the 20 something dollars in tolls! Outrageous.

But I suppose it was worth it, although right now we've been in the library since noon and it's now 6 oclock. I don't know how he does this. He works so hard, and I can't help but feel selfish and want to cuddle and leave this stupid library. But I'm sitting here blogging, pretending that i'm actually trying to do some work.

It was so nice the first day I was here. About 65 degress and sooo sunny. Sunshine all around. But then it got cold. =\ chilly, but not frigid as it is in RI. It's still nice to be here though. Meet his friends, etc. I know he appreciates my visit. I cannot wait till I'm down here full time wiht him. That's my task for tomorrow. Call appartment places. =\ hmmmm Idk how to do that at all. lol

oh well we'll see how it goes.
That's all for now.

Hmm... Forever until Divorce?

2009-02-01T03:40:00.003-05:00

Looks like we all make mistakes, expensive, big mistakes (hey I've been there and my expensive mistake is sitting in my garage, needing an oil change) but we all make 'em. Looks like my big sis made hers. Like she didn't have enough on her plate. How unfair that now, on top of it all, she must deal with a good-for-nothin' stupid head like Ben. Ugh. Talk about frustration!

The puppy is staying with me starting tomorrow though, so hopefully i'll update with that...

xox,
Beth

P.S. That's another thing I forgot to mention about 2009. I want to start blogging more. Once a week is my goal, and then hopefully more often. =D No one reads it but its nice to know that there is always a possibility of someone reading it. Right???

Ring in the New Year.

2009-02-01T03:26:00.004-05:00

Hello 2009.

Two thousand and eight was a rough one. Working backwards,I caught MRSA from the last hospital stay, which was mentally tough as well as physically tough; my body just didn't want to seem to fight it off. I became extremely depressed beginning of fall semester =\ which didn't aid my health any. I missed Kyle, I was trying to cope with many, hard, life-awakening thoughts/decisions about my future. [Thank god for therapy now... yay!] I fell behind in school work, the whole deal. Missed all of october because I was in the hospital. Just not a good time.

Summer sucked because I was underpaid, I always overwork. Spring was tough because I felt so alone without friends. Kyle had gone back to school so I didn't even have the comfort of having him around.

Looking back there are things I wish I did differently, and things I am proud of. I am proud that I was able to improve my lung function 15% over the summer, and get it out of the 50's. I am happy that I had so many fun times with kyle and that I stayed active. I am grateful that I learned all my hard life lessons early.

I look where I am now, a month into the new year, and I am proud to see how far I've come. What I have accomplished. A year is a long time, and you can achieve a lot if you put your mind to it. I grew up a lot last year and I believe that was the best thing that happened to me. I matured, and finally accepted it and grew up. Granted, I still have a LOT of growing up still to do, but I'm more willing to try.

2009 holds many expectations and high hopes for me!!! By the end of '09 I hope to accomplish most, if not all of the following:
Finish up my first year at WGU. Becoming that much closer to an elementary school teacher.
Moved to Virginia, switching clinics, doctors, etc. [this step is scary!!! but oh so exciting]
Improve my mental state
Start being more physically active
Love my boyfriend every single day and tell him how great he is.

haha , the last one seems cheesy but its true. I really want to show him that I am in it for the long haul, that I'm working to be together too. I can hold my own. Showing him that I care enough about our future to do what's best, not necessarily what I want to do (because who wants to do meds when you could sleep?) but rather what i need to do.

So here's to a new year. Let it be a great one.
xox,
Elizabeth

2008-11-30T20:01:00.003-05:00

Oh Darlin'

2008-11-28T18:28:00.002-05:00

Oh! My darling is finally home. =D I picked kyle up on Wednesday at 12 am. Thanksgiving was at his house with his family. I had met everyone before, except Aunt Pat - who is very colorful. We had a wonderful time. I'm also so thankful when kyle comes home and we get to be together.

I'm feeling okay health-wise, these past few weeks I've been feeling crappy. Which is weird, seeing as I just spent two weeks in the hospital. Oh MRSA why do you hate my lungs so? Anywho, I'm very excited because I am currently looking into a distance learning program to get my elementary education degree. This way I can move down to Virginia with kyle, and he won't have to sacrifice his education; not to mention that we'll be able to be together. We are both very excited.

What's even more exciting is that we went RING SHOPPING! WOOOHOOOO. Cmon what's more official than that? I found this gorgeous set. White gold, Princess cut diamond like a solitaire, but then it has diamonds on each side in a sunken setting. And the wedding band is just a band with sunken setting of a diamonds all in a row. Since I have such small hands and dainty fingers - size 4.5 - large amounts of diamonds look awkward on them. Good for kyle because the larger the diamond the more expensive. So the set is only 1/2 ct. for 799$ for both. Very very exciting.

*sigh* I love being in love with my handsome man. =)

Forever Until Death

2008-11-28T18:16:00.006-05:00

Julie got married on November first, and boy what a day she had! Apparently she woke up early early in the morning and had Ben take her to the emergency room because she believed she broke a few ribs from coughing really hard. So my poor sister, miserable, and sick had to be in the ER from 2am until almost 11 in the afternoon -- the eve of her wedding! She came home with some morphine in her butt and some perks. =D

After a nap, when I arrived at 2:30, the process of getting ready started. I did her hair, and granted it came out BEAUTIFUL, but we did not do a practice run and I winged it. That's why she had to rush around at quarter to five to get her dress on and the last of her makeup on.

My mother and I got ready, rushed around, were late (haha so our style, well my mother's style) and the ceremony finally began. It was beautiful! Everyone cried when Julie had to say her 'I julie take you ben... blah blah" because she was quiet and all of a sudden her little squeaky voice cracks and we all knew she was crying. Break out the waterworks....now. Then we ate, and drank and all was merry.

I just can't wait till my wedding!

To Have and To Hold Till Death Do You Part

2008-11-01T23:52:00.001-04:00

SHE"S MARRIED! My big sister got married tonight. WIll post pictures and things Monday!

Puppy Teeth Are Sharp!

2008-10-23T23:18:00.003-04:00

Ouch! I finally met my sister's new puppy since I'm FINALLY out of the hospital. All I can say is puppy teeth sure are sharp. BUT, I did teach Darwin (the dog) how to sit today. We made excellent progress.

I ran a little today. And don't have much else to say. I'm kinda bummin to go back to school after missing so much work. And I miss kyle sorely. That's all for now.

A Blurker is Born...

2008-10-22T02:41:00.003-04:00

I am obsessed. I am an official blurker. It was one in the morning and I found myself fidgeting in bed becuase I wanted to read more blogs. That is when I realized I have an addiction. Truely, addicted. I found myself craving blogs, the need to blog! Seriously? I don't even know any of the people I'm reading about! But yet, I find, that at one o'clock in the morning on a tuesday(technically wednesday) I have the need to be a blurker. Apparently, reading about strangers has upt one on sleep? Go Figure.

So, here I am. Guilty as charged. And since now it's 2:50 in the morning I decided to try my hand at the blogging, not just the blurking. So cmon all you blurkers out there, start blurking!