Monday, September 27, 2010

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)
Right Hip
Right shoulder
Right elbow
Left elbow
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.)

Tuesday, September 21, 2010


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)

Monday, September 20, 2010

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.

Tuesday, September 14, 2010

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.

Wednesday, September 8, 2010

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!

Tuesday, September 7, 2010

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.

Monday, September 6, 2010

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.