Sing your mucus out?

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.

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.

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.

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?

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...

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...

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

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.

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

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

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...

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?

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!

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...

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

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

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

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---

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?

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!

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.

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...

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?

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'....

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

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

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:

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

Thing we are going to do:

1. Spend the day down in VA Beach
2. Swim swim swim
3. Have a mother/daughter Spa day
4. 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...

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.

Stranger like Me

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

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

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

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.