Even Soda Doesn't Cut it Anymore

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.

Birthday Woes

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.)

Obla dee, obla da things are all right!

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.

Bite your tounge

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.

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

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!

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

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.

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.

Social Security: None for you silly girl!

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...

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. 

Moving on Up (In this case down)

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 

Bi-what?

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.

Ring in the New Year.

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