CF meet and greet in NYC

I must say I had an absolutely amazing time! It was awesome meeting Piper, Courtney and Patti for the first time. Graves I had already met at Melissa's party in March so I knew him already :)

What I found the most amusing was not the fog at the top of the rock but the coughing we all did. For me it was the funniest part. It was like music. We each have our own distinct cough, but always phlemy and always head turning.

I have never met someone in person who had a tx so meeting Patti was great! Seeing someone who went through all the BS I go through and now no longer coughs from CF was mind boggling and facinating! Watching her take the stairs like a champ and then not try to catch her breath at the top really made me want that! Those dam guards laughing at us complaining that we had to take the steps and then the 3 of us breathing REALLY heavy at the top. Assholes! I also really enjoy meeting the significant others of CFers because it does give me hope :) Nate seems like a really great guy and very supportive of Patti. A great find!!! And Patti your son is adorable! He had a blast and was so cute wanting to sit on all our laps. He is going to be the next Bill Gates for sure! Thank you so much for coming and letting us all see what life can be like after tx!

Piper is totally NYC! She fits right in with the persona of the city. Very sheek, very "go get em", very fun. She is definitely a lawyer all the way! After viewing the fog we were a little hungry again (dam CF haha!) so we decided to go to the food court and eat. Well the place was packed and there was not enough seating for the 8 of us. So we saw this little cafe place with seating and asked if we could sit in there. They said it was closed and we couldn't. Piper tried desperately to get us in there but they were stubborn as nails and refused, telling us there are 400 seats in the food court, sit there. They didn't seem to get that we are a large group and would prefer to sit all together. Luckily we did find a few emply chairs and all to gather in and we hung out for a few more hours. Thank you Piper for giving us a great tour of the city!

Courtney is super cute! Very quiet but so sweet!! I am so glad we were able to work around you being in NJ so you could come! Maybe one day we can all come to Dallas and meet you down there. That would be a fun road trip! I hope you don't think Kim and I ditched you in the train station. I went to get our tickets and Kim went to look for a potty and when I got the tickets I didn't see you anymore so I assumed you saw your train was coming and took off. Then I thought that maybe we just left ya and then I felt bad. And being that I didn't have your number I couldn't call to make sure you found it ok. I felt bad, but was so relieved when I saw you posted this morning :)

Graves it was great seeing you again. I am glad that you choose to be a part of our CF community. You will make a great RT! Kim was confused and thought you had CF also. On the train ride she was like "wow did Graves have a tx too? He didn't cough at all". I explained that your best friend had had it and then she was like "ohhhh ok that makes sense haha!".

Even though we could not see a thing at the Top of the Fog, we enjoyed ourselves. We made the most of it, taking pictures in clouds...literally!!! Then we all watched Brady run around in the Target room of lights while we sat on the floor and chatted. That was alot of fun and screw the guards if they hated us :) I agree with Courtney that the room is set up so idiots like ourselves go in, try to make it light up by dancing and the guards sit in a room laughing their asses off at us haha!!!!

I was exhausted by the end of the day and could not wait to crawl into bed!!! I slept until 11am today haha!

Here are a bunch of pictures from the day:

This is Courthney, Me, Patti, Piper and Graves outside of the Prime Burger where we had lunch

Patti's hubby Nate walking around and Brady asking Piper to pick him up in the bachground

Sadly this was the view from the top!

The top of the Rock as seen from the floor 67 observation deck

Us at the top in clouds!

We went up to the 69th floor and looked down over where we had just been (for the pic above)

Upon leaving Rockefeller Center the clouds had dissappeared slightly and you can see where we HAD been!

All the flags

Outside the ROC...we did lots of group shots haha!

Clinic Today

Clinic went well. My weight and numbers are up slightly. I put on 4 lbs! I now weight 116. Fat ass hahahaha!!!

My PFTs are as follows:
FEV1 - 42% 1.31L... it was 40% and 1.26L last time in July
FVC - 65%
FEF25%/75% - 15%

Overall very good.

I am being put on O2 at night! Yay!!! Just 1 liter for now, but I am glad about it. So I have officially joined the O2 user ranks LOL. I have to start exercising regularly though. They want me to monitor my O2 when exerting myself. So it looks like I NEED to get my fat butt outta bed on the weekends and get there, and start walking at night with my friends and SIL.

He is also stoked about my 4 day work week which I will be starting soon...kinda. Most likely Nov 1st or somewhere around that date.

I didn't ask about tx but I just am not ready to hear his response to be honest. As much as I want to know what his criteria are for recomending tx I am not ready to hear that I may be closer than I thought. So I will hold off on that for a while :)

Back to work I go weeeeeeeeeee!!!!!!!!

Costume

Well I went with the zombie prom queen. I usually do the sexy slutty thing every year so this time I figured I would do something more Halloweeny :)

These are the past two years :) See what I mean!!!!


Last year I was Raggety Ann


Year before I was a sexy cowgirl...came in 2nd place too!!!

Halloween costume

Ok I am recruiting all my friends to help me pick the perfect costume for Halloween this year. I have a few picked out but I just can't decide! And yes I am sticking with the clearance ones since I am broke hehe. I am leaning more towards the zombie prom queen though :)

Pebbles

Ghostly Gal

Zombie prom queen

Mrs. Krueger

Daphne

101 things to do in 1001 days

101 things to do in 1001 days

Thanks again to Lisa for posting this.
Here is where you can find the info. http://www.triplux.com/dayzero/

Basically you are supposed to come up with 101 things you want to do in 1001 days or 2.75 years. They are supposed to be specific goals and realistic.

I would like my countdown to start on my 28th birthday. So October 10, 2008 I will begin!!!!!

It reminds me a lot of a Walk to remember, the movie. Where she makes the list of all the things she wants to do before she dies. Great movie and better book for those interested BTW.

I have spent a lot of time thinking about my list (almost a month it took, goodness). I actually completed some while in the process of doing it haha!

1. Pay off credit card debt
2. See a show on Broadway
3. Make friends with people I wouldn’t normally be friends with
4. Create a scrapbook
5. Print out all my pictures I have on my computer (that are worthy of printing)
6. Get my computer working again so it reads CDs
7. Take a cooking class
8. Start riding horses again
9. Write a short story
10. Have the short story published
11. Finish at least one book a month (0/33)
12. Take another history class
13. Get a sleep study done for O2
14. Take my jeep “muddin”
15. Take a Caribbean vacation
16. Do the tourist thing in Philly
17. Get a professional massage
18. See my nephew more often
19. Have dinner with my dad and step mom once a month or every 6 weeks
20. Donate all my old books to the library
21. Get all my pants hemmed
22. Get a CF tattoo
23. Do volunteer work
24. Get rid of old junk
25. Start exercising more
26. Make homemade Christmas presents one year for everyone
27. Paint a picture
28. Do saline rinses
29. Delete old files off my computer
30. Go to the movies once a month
31. Smile at a stranger at least once a day
32. Spend a night under the stars
33. Go camping
34. Learn to knit
35. Go to Disney World
36. Win a Halloween costume contest
37. Make candles from scratch
38. Buy a mountain bike and actually USE it
39. See Rome again
40. Go on a super romantic dinner
41. Display my Lenox crystal animals in something other than a moving box
42. Visit all 50 states (31/50)
43. Spend a day at the spa and not worry about price!
44. Go tubing down the Delaware
45. Learn to drive a wave runner
46. Get a makeover done
47. Make chicken noodle soup from scratch
48. Make an edible beef stew
49. Take an Italian class
50. Take a French class
51. Buy a new DVD player
52. Buy a new stereo
53. Start going back to church
54. Wish on a shooting star
55. Stay off of lung transplant list (active list)
56. Celebrate 30th birthday with HUGE party
57. Send Holiday cards to family and friends
58. Update address book
59. Pick my own strawberries
60. Visit Times Square on New Years
61. Go to Vegas
62. Start doing Pilates again
63. Date more and not be so darn picky about dates
64. Keep a private, paper journal
65. Eat more organic foods
66. Visit grandparents’ graves
67. Begin IDEP program
68. Become a member of ASID
69. Save money
70. Make a will
71. Do a scavenger hunt
72. Throw a surprise party for a family member or friend
73. Spend an entire weekend in bed/on the sofa (not sick)
74. Recruit more people to be organ donors
75. Go ice skating
76. Go roller skating
77. Play volleyball
78. Stop working so much
79. Spend more time with friends’ kiddies
80. Go to First Friday in Philly
81. Buy laptop for hospital stays
82. Actually go Christmas shopping on Black Friday
83. Finish Christmas shopping before December 1st
84. Go on a picnic
85. Learn to ballroom dance
86. Bake homemade banana nut bread
87. Recycle more
88. Buy more organic products
89. Throw a Halloween party
90. Start Birth Control
91. Get teeth whitened
92. Meet more online friends in person
93. Be more feminine (i.e. more necklaces and earrings) for work
94. Have a yard sale
95. Work on self esteem
96. Watch entire Disney animated collection videos
97. Curse less
98. Plant a tree
99. Do a random act of kindness
100. Meet the man of my dreams
101. Celebrate completing 101 things in 1001 days!

My Disney Vacation

We had a blast! The weather cooperated mostly for us which was great. It rained the first day we got there and then one night but that was ok. It was so hot and humid I thought I was gonna die! We would walk outside and down to the bus stop and be drenched, the sweat dripping from us. I have never been covered in salt so bad as I was that week haha!! I sparkled in the light, it was cool. We saw everything we wanted to see and did all the rides we wanted to. I chickened out on doing Space Mountain. I did it last time I was there at age 7, and I was going to do it again but I was too scared. I remember being scared shitless last time so I opted to wait.

Here are a few pictures of the trip. Enjoy!!!!

The rain...it was pouring!!!! I liked playing in it though :)

Yes I am a dork!!!!!!!!!!

D and me with Snow White and Dopey!

Cinderella's Castle

He gave me a super big hug!

Can you see the salt???? EWWWW :)

Leaving for Disney

Well not really until 3:30am Thursday morning but I know I will have a ton of stuff to do tomorrow night so I thought I would update now :)

Maggie is all taken care of. My mom is going to pick her up Thursday morning after work at 9:30am and keep her until Friday afternoon. Then she will drop her off at the kennel where she is gonna stay until Monday morning. I called today and it is all set up. I just have to pack a bag for Maggie. Then my mom will keep her again until Thursday afternoon when I come home. Or she might drop her off on her way back to work Thursday around 2:00 pm. I am glad that is all settled.

I am pretty much packed up. Tomorrow I am getting 7 of my meds delievered from CF Services Pharmacy and I have 3 I have to pick up from Rite Aid. So that will keep me busy. All I have left to pack is my meds and tolietries.

Tonight of course I am trying to upload the new Staind CD to my iPod but my fucking computer is being a bastard! It won't even read the dam thing and Microsoft support keeps trying to tell me there is NOTHING wrong with my computer! Oh really? Then why the fuck can't I upload CDs when a few months ago I could?!?! Dumbasses!!!!

I am super tired tonight but I am trying to stay up a little bit so I am tired tomorrow and will fall asleep by 10pm :)

Heart broken...

but not in the sense that you all may think.

I have been having mini anxiety attacks at night. I am super worried about my heart. My actual heart not the “love” one. Throughout the day and at night I can feel my heart beating. Sometimes it feels like it is going to explode right through my chest cavity. Sometimes I feel like others can see it beating. Sometimes I will even grab my stethoscope and see just how hard it is beating. But then the crackles from my lungs over ride the heart and I can’t hear didly.

I have this down on my list of things to talk to my DR about at my next clinic appointment on September 24th. I am just worried that I am going to end up needing a heart and lung transplant. My worries are totally unsolicited since I have no idea if my heart is even behaving in a bad way. For all I know my resting heart rate of +100 could be ok. Though I highly doubt “resting” at that elevation is happening. I’m already hesitant about a lung TX so adding the heart into it might be the factor that throws me to a no. Or what if I get the lungs and then a year later I need a new heart? That is a lot to put on the body. Again totally could be worrying for no reason here.

I have been checking my O2 and HR when I wake up in the mornings. Right after my alarm goes off I thrust my finger into the pulse ox and stare at the bright green light. Almost always I am around 90% or lower and my HR is above 115. I just woke up WTF? I am also going to ask about a sleep study. More for curiosity’s sake than for anything else. I am sure my O2 doesn’t drop low enough to warrant supplemental oxygen at night, according to the insurance companies, because they are doctors ya know. Or maybe my heart rate is super high and THAT will get me O2…who knows. But for now I will just lie in bed at night listening to the thump thump of my heart and hope that I don’t freak out.

Photo Collage

Well since I am totally bored vesting I decided to do a collage of my favorite people. :)
Enjoy!!!