Monday, May 25, 2009

going to hawaii!

well it's tuesday in the early morning and i'm freaking out. i cant believe in 3 days i'll be in hawaii. i'm so freaking scared of honestly everything and anything that can go wrong. the plane, the ship, the hotel. i'm a worrier by trade. i always expect the worst and pray for the best. i guess it's my cf way of thinking. it's really hard for me to be positive sometimes. i will have fun no matter what. i'm a bit concerned cause i've been a little sob but i think it's cause i'm ovulating and i've been doing these long walks on a full stomach. w/e my digital pft machine says i'm fine and i'm coughing up like crazy when i feel anything junkie in my lungs. my mom is all concerned but i try to ease her thoughts and tell her it's my breathing excersies, which it is. i know i'm not anywhere as bad as i was last year health wise. well all is the same on every other aspect. i'm off to hawaii on friday. :)

Monday, May 18, 2009

so.....i'm working out like a beast and trying to cough up as much as possible! my friend told me about this supplement called NAC that's supposed to maintain cellular health. she knows someone who's pft's went up 10%. i think that's just amazing. right now if they told me that dog poop helped with my lungs i'd be right there trying it. lol. i'm so ready for hawaii, i want to do so much. i just hope i dont get short of breath. if i do i know that i can just take a minute and breathe deeply and i'll be fine. oh, i went up to tampa to see my friend from dc and it was so crazy. everywhere i looked reminded me of things i did with my ex. he lives up in tampa. so i ended up texting him and of course he's doing great and working alot and everything is just sunshine and rainbows. BARF. i want to be happy for him but it's so hard. my friend from dc was a great host. it wasnt what i thought it was going to be but it was nice. w/e no biggie. i'm really hoping my lung functions go up when i see the docs the week after hawaii. my gluts are killing me! yesterday i climbed up this rock slide all day long and now i feel it like crazy! i'm dying to do it again. haha. gotta go. bye!!

Wednesday, May 6, 2009

SO UPSET!!! :(

well i went to the docs on monday and my pft's went down. i guess that's cause i finished the study med about 6 weeks ago and the effects of it have left my body completely. i wanted to cry when i saw my numbers. my fev1 was at 28%. oddly enough my docs werent worried a bit. they said it has happened to all the patients who had been on the study med. it was a blind study but i guess i was getting the good stuff. i'm still working out and eating great. i'm up to 106lbs last year i was 92lbs. i'm only 4'11". i asked the docs what's next? can i still go to hawaii, do i need ivs? they said no that my numbers will stablize and i'll be back to 39% soon. can you believe he told me dont look at the numbers? i was like what! i live by those things. he said what mattered was how i looked and felt. plus my sat's were at 97% on room air. i was on inhaled levaquin for the study and i want that med asap!! lol. i'm actually going into another study for cipro. it's supposed to be REALLLLYYYY GOOOD. I'm sure your numbers will get up in no time. i did feel like i was coming down with a cold this weekend so that might be why they went so low as well. i talked to another cf friend who was on the same study and her pft's went low as well, so low they wanted to admit her. she asked them for a week to get better and her numbers went back up. long story short, if they arent worried i wont be either. i'll check up on that med you wrote me about as well. sorry so long. lol. love ya, wendy v.

P.S. this was a message i wrote to a cf friend. i just copied and pasted. i didnt want to write the story over again.