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.