Monday, October 20, 2008


I need to start. I want to start. I HAVE to start. If I want to improve my lung function and get back to my base (which is somewhere close to 50%) I need to work my ass off to get there. So I have decided that today I will start again. Even if I start out going a couple days a week, it is a start. I am bringing workout clothes with me to work and I will change when I get to the gym.

Here's to getting healthy and staying off that lung transplant list!!!!!!


Sunday, October 12, 2008

My Birthday night out

We had a flipping blast last night!!!!! We pre-partied at Lou's house and then went to Da Bar around 9:30ish. It was great!!! I danced to a few songs with Kim (heels+CF=painful lungs). It was fabulous being out at a bar with NO SMOKING!! I am so happy PA decided to set that law into effect. Now people like myself can actual have a social awesome is that?!?! Most people left by 1 but April, her BF Tim, Stacey, Bob and I stayed till closing. I didn't get super drunk but had a sweet little buzz going. Plenty to enjoy the evening and NOT feel like complete ass today! There were so many people there I felt so loved hehe!!! I just have to get the rest of the pics from my friends :)

Here are the ones from my camera:

pre-gaming with my martini
Kim and I

Carrie and Dave

April and I

Christine, Kim and I...silly faces

Christine, Kim and I...normal faces

April, Jay and I

April, Stacey and I

Stacey and I

April and I with Bob in the middle

Friday, October 10, 2008

Happy birthday to ME!!!!!!!!!!!!!!!!


It's my party and I'll cry if I want to hehe

Nope, no crying here. Just some exhaustion LOL.

So today is my 28th birthday. That means I get to officially start my 101 things to do in 1001 days list.

As a birthday present I bought myself the Blackberry curve. Well I was due for an upgrade and with the online discount I ended up only paying $50 so how could I NOT get it! It is the best thing ever!!!!! I can't believe I never had one before LOL.

I will be celebrating with my friends tomorrow night. We are going out to party and drink and be merry. And we are going to a local bar that is smoke free so that makes it even better!!!!!

The Phillies play tonight and we get to wear phillies gear and jeans to work today woot woot!!!! GO PHILS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And as a side night...I bought a plane ticket to go meet a fellow CFer friend. I leave on November 14th and come home on the 18th. I am super excited to meet this person. Once I get back I will tell all who it is. If you reply to this blog and KNOW who it is please don't tell. Remember...hush hush for now :) I just like to tease my readers ;)


Sunday, October 5, 2008

Who won this battle...CF did

I woke up this morning slightly depressed. Why you ask? I’m not sure. I should be thrilled! I get to go watch my adopted son Owen today for a few hours while Kim gets her hair done and Drew is at his softball game. I love watching this baby. He is the bestest kid in the world! I love him with half my heart (the other is reserved for my bestest nephew James).

But, I lie, I do know why. Yesterday was a hard CF day. A day where I realized that CF is winning right now. Where CF is there poking at me, telling me that I can’t do everything I want, that I need to watch out. Telling me I pushed myself too hard, doing daily, everyday things.

I am slowly packing boxes for my move. Just dividing everything into must haves and storage. So each week I take the few boxes I packed for storage to my mom’s so her BF can put them in the attic in the garage for me. There are rarely more than 4. And usually one or two are small boxes. This week was no exception. I had two regular sized boxes and two small boxes. I left the large one at home. Too big for me, with or without CF. To make my life easier I take the boxes from my living room and put them on the landing of my stairs. My steps go down about 4 steps and then turn, there is a landing there. I put them there so that I have less to go when putting them in the truck. So I packed all my wash into my jeep (two loads since I needed to wash my curtains to pack them) and headed to my mom’s. I unloaded the wash and drug it down to the basement…this wore me out. I put a load in and went upstairs to chat with my mom. I stayed about 15 minutes and then got in her jeep (Cherokee so it is easier to get boxes in) and went back to my house. I got back home and loaded up the jeep. Took less than 10 minutes. I thought I was going to die. My HR skyrocketed! I was struggling to breathe. I pressed on. I wanted to just get FOUR boxes into the jeep. I finished then supported myself on the railing while I coughed myself to tears. Literally. My head felt like it was going to explode, my eyes bulging out. I finished coughing and went back to my mom’s. I sat inside for a few minutes to make sure I had my breath before I unloaded the car. She has a wagon so I could just put the boxes on there instead of trying to carry them to the backyard garage. I would DIE if I had to do that. I refused to let them help. I needed to do t his myself. That went smoothly. Only a few coughing moments. Then I went inside to change my wash. I loaded the dryer up with my clothes and grabbed the towels to hang outside. I got to the top of the basement steps and coughed my lungs up. My mom asked if I was ok. She rarely does that. She knows my cough. I said yes and pushed myself outside. I hung up the towels, the whole time coughing. I went inside and leaned against the counter watching my mom mix up the ingredients for a cake. I felt EXHAUSTED. But by this point it was 3 and I needed to do more running around. No nap yet.

By the time I got home it was 4. I only went to my brother’s to drop off the mortgage statement. I helped Tracy hang up a thing for my nephew so he can measure his height. And we chatted for a bit. It was relaxing. But instead of just sitting down and doing a breathing treatment, when I got home, I decided I needed to take the curtain hardware off of my windows. So I did. THEN I did my treatment. A full one which is RARE for me on the weekends. Usually it’s just my nebs, not nebs and vest during the day. But I felt I needed it. After that treatment I went back to my mom’s to get my wash. I was picking my friend up at 5:30 so we could go to a birthday party for a friend of ours. I got my dry clothes out of the dryer and took my curtains to the backyard to hang them. Even after JUST having a treatment I hacked myself silly. I was disappointed. Very much so.

Fast forward a few hours (tired of the play by play yet? HAHA). We get to Kim and Drew’s to watch the Phillies game. I am outside with my friend Lauren and we are chatting. Several times we need to stop talking so I can cough my heart out. 5 minutes or more these were lasting. I was shaking I was coughing so hard. Of course it didn’t help that she would make me laugh DURING the coughing! I blow it off as nothing, just normal. Inside, though, my mind is screaming at me, “you pushed yourself TOO hard idiot! This is the price you pay!” I head home shortly after this.

I have a friend, we chat everyday, via webcams. So we begin our chatting. I hook up to my treatments, he is doing his (yes he had CF as well). During our conversations I have a few coughing spells, so bad that he asks if I am ok. These are lasting forever it seems, just wearing me out completely. I just smile and say I’m fine. But deep down inside I hate it. I hate myself. I hate CF. After some prodding from him and seeing my HR hit 160 and O2 hit 89, I give in and put my oxygen on. So there I am chatting with him, via webcam, with my O2 on, while I am awake. I feel defeated. Utterly and completely defeated. I try to make light of it all telling him not to laugh at me. He won’t, I know this.

I just hate it. I hate having to pace myself. I hate having to pretend that I feel ok. I hate having to put on a happy face for everyone and I hate having to pretend CF doesn’t bother me. Because quite frankly, CF scares the living shit out of me. Lately, as I realize what I am losing, I feel myself getting nervous and scared. Like last night as I sat looking at myself on my screen with the tubing around my face, I thought how this time last year I NEVER would have thought that I would need O2 during the day or night. He and I talked briefly about tx, but I had to stop it because I could feel the tears welling inside. I don’t want to think about that. I want to live. But I don’t know what to do to make myself live longer, to stop the progression, to win for once.

I don’t need IVs, I don’t need a hospital admit, it was just a bad CF day. Today I feel fine again. It was a day I pushed myself over the CF line. The day where my body laughed at me and made me out to be a fool. The day where CF said fuck you and won.

I hate those days, I truly do.

Friday, October 3, 2008

New Schedule

Well I have to make a decision soon. If I am going to go to a reduced work week I need to start it by Nov 1st. That is totally MY deadline, no one else's. I think I need to do a pro/con list.

But SO much is going on at work that I kind of DON'T want to work 4 days a week. Our Interior Design department is finally getting under way. We have quite a few jobs that we are taking on and for the first time I am in charge of some things. I am talking to reps, owners, going to meeting etc. I am really loving this! Besides, how AWESOME will it look on my resume to have that I was on the team that STARTED the department??? Helloooooooo!!!!! Just to clarify...I am not looking to switch jobs, but one day, after tx I will need to job hunt again.

I know I know, my health is the MOST important thing, I get that, I realize that, I understand that. But it doesn't make it easier to say "yeah sure I'll work less when I know we are super swamped with work in our dept even though not so much in the others". And no, because I know some of you are wondering, it isn't THAT easy to just take some people from architecture and have them picking out materials and making up presentation boards. If it was they wouldn't need us :P

So anyway. I am looking forward to a reduced week mainly because I will spend less money on gas. Not a significant drop but a small one. It will be the same day as my clinic appointments so that will work out well. I plan on babysitting Owen on Wednesdays too, so that is a full day of me and him time. And I can take him to Carrie's where my SIL watches the other 4 kiddies and we can all have a grand old time.

But I feel fine. I really do. Not super fantastic but fine. I think the O2 is helping and if I wasn't staying up so darn late, because of someone, I would be getting my sleep and feeling rested ;D I think this house had a lot to do with last winter and being so sick. How many times did I run out of oil? That plays a huge roll in my health. Trying to stay warm in a house with leaky windows and it's 20 degrees out. HA! And in 3 weeks I move so then I will be in a house with working, insulated and non-drafty windows.

So basically I guess what I am saying is that I don't FEEL like I need too work less. And I know full well that I can and most likely will do some work on those Wednesdays, be it research on the internet or looking over drawings.

OY!! To make a decsion is SO freaking hard for me!!!!!!

Wednesday, October 1, 2008

6 quirky things

Well I read Christy's blog and apparently now I am tagged LOL!!!!

So here are 6 quirky things about me :)

1. I like doing laundry, just not lugging my stuff to my mom's to do it.
2. I am obsessed with corny quotes.
3. I love history books.
4. I love being by myself.
5. My dog is more important than me.
6. I am a very structured person and when my schedule gets messed up I get confused VERY easily!!!

And I am taking Christy's que and anyone that reads this is tagged LOL!!

What to write about?

Well originally this blog was supposed to be about my computer and how badly I thought it was fucked up on Monday. As I sat bawling my eyes out in my living room practically curled up on my tiny desk chair I got a text from a GREAT guy telling me not to cry that this will all make a good blog. So I figured if I ever get my computer back I would blog about it. Well it's fixed but I really don't want to haha!

INSTEAD!!! I figured I would re-post a few of my old blogs that I really like and was thinking alot about today. Don't worry they are short!! :)

What I want in a guy:
Someone who:
Is not scared of CF
Is willing to support me financially and emotionally
Who understands that it is hard not being able to support yourself anymore
Loves me for me
Will hold my hand when the doctor says transplant
Will visit me when I am sick and in the hospital
Will laugh at the stupid gown he has to wear
Will make fun of my quirks but in a silly way
Will make me laugh like no other
Will let me cry on his shoulder and leave tear stains
Will hug me when I'm feeling down and all I want to do is scream and cry
Will tell me I am beautiful with my O2 on, IV's hooked up, hair a mess, and no shower
And he will mean it!
Won't mind sitting home all weekend because my lungs hurt too much
Will be by my side until my last breath
Will laugh at my million and one ideas that I never follow through with
Will accept me and my dog into our home
Will respect my decision in the end if I decide to stop fighting and let myself go
Will love me no matter what and understand that some days I am going to be happy and others I am going to want to die but that no matter what I will always love him

I want to:
chase after him around the living room until one of us catches the other one
curl up on the sofa and watch reruns all night long
goof on each other
get drunk and have deep heart to hearts
lay my head on his chest and hear his heartbeat
bicker and then flick his ear to make him laugh
spend all day in bed/sofa just enjoying each other’s company
leave him stupid gifts and messages to show that I care
fall in love with him everytime I see him
call him at night just to hear his voice before I go to sleep
cook dinner together and then order out when we screw it up from laughing too much at each other
hold hands when walking everywhere
get dressed up just to hang out at his house because he loves me dressed up

Ahhhhhhhhhhhhhh :)