Tough Weekend......

This weekend on sunday Ava Campbell passed away. She was only 15 when she passed. I've seen so many of my close friends with cf pass away and i cant count the numerous times i've gone to funerals to say goodbye. It hurts this time even more cause she was so young. Before the cfers were older than me and i thought that's just how cf was, we didnt live that long. I still remember the first time my mom told me someone with cf that i knew passed away. she sat me down on the couch and told me a friend passed. i immediately started crying and i just told her i didnt want to die. she told me everyone dies, it's apart of life and that we all go to heaven. it didnt make it any easier. i remember when i was a teenager and i would get hospitalized i had a crew of cf friends who would all go in at the same time for some odd reason. we would go to each others rooms and stay up all night. it was a blast. most of them arent with us anymore. When i was 18 a good friend of mine went in for a tune up, no biggie. then all of the sudden she just started getting worse and her sats wouldnt go up. she ended up in ICU and i would go visit everyday. Then one week afterwards her mom told me she was getting better so i didnt go visit for a couple of days. I went to see her the day after halloween and i went into the ICU and her bed was empty. i thought it was odd and i told my bestfriend to go and ask cause i was so scared of what i knew had happened. she passed away the night before and no one called to tell me. i just broke down in the hallway of the hospital. i was so upset, the funeral was even worse. Even though it's tough i still go to say my goodbyes and to let them know that i was there to the end with them. I'm thinking of getting a tattoo on my side of a rose with the stem and thorns with 65 roses on it in memory of all my friends. i dont have the money right now but i know i will get it in a couple of months.

Changing the subject, when i got back from hawaii even though i had the time of my life i was sad. i was sad cause i didnt have someone special to share that moment with. I've been single for so long and i'm so tired of it. i know its fun that i get to do what i want when i want but honestly i'm so freakin lonely. sometimes i get mad at god, it's like a cant catch a break. i thank him for everything but why doesnt he bring love into my life? i know i've complained about this so many times on here but it's just sad. Also the men in miami are horrible. This one guy i used to date has a girlfriend now and he still texts me to hookup with him. Then me and my girlfriend went out and some guy friend of hers who's married with a pregnant wife came to have dinner with us and paid our bill. he told his wife he was working late. it's just sad how no a days men and women dont respect themselves and have such low morals. i dont know if it's just in miami but i'm starting to think so cause i know plenty of cfers in great relationships. i love ranting sometimes. Oh also my cf friend came down from sarasota with her boy to hang out and i havent even gone to see her cause they are just the most lovey dovey couple ever. it really makes me depressed to go see them. i have no idea why i've gotten like this. couples never used to bother me before no i'm all sickened by them. i guess it's cause i want one so bad. honestly people the longest relationship i've had was when i was 19 and it lasted for 2yrs. i've only been in love twice and both times my heart has been shattered to pieces. i dont like online dating nor do i feel like volunteering somewhere for the wrong reason. i dunno what to do. thank god i have a few friends that are single and see things like me. the only difference is that they have been in long term relationships. i would love to say i dated someone for more than 5 months. geez it's just so aggravating. plus with cf and me probably not being able to have kids and not being able to work full time i just feel like men dont see anything worth investing in me. i cant give them anything but my love. well anyways that's my rant. god bless and have a good nite everyone, wendy v.

back from hawaii!!

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. :)

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!!

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.

Dr. visit on Monday!

well i had my last study appt. on monday. i've been off the study med for a month now. i'm at 108 weight wise which is super heavy for me. i've never been over 104. then i did the dreaded pft. the last time i was at 32% which sucks. i've been stuck on that for 4 months now. it's better than last year when i was at 29% and on the transplant list. so i remember doing the pft and looking at my fev1 with shock. it was at 39%! i know it's not much at all but i've been working so hard to just get something past 35% and finally i did it. also my docs told me last yr that my scarring in my lungs were pretty bad and i would only be able to get up to 35 or 36% and now i'm at 39%. it's insane and i hope the machine wasnt broken or messed up. i'm going back in two weeks so we'll see how i'm doing at that time. i feel the same with 39% honestly. i have been working out almost 5 to 6 days a week. it's not hard work outs but i do sprints outside and i do my exercise bands to tone up and i have the eliptical and treadmil also i have been sweeping and mopping 4 days a week cleaning my house floors and omg that's such a workout. lol. my chest was really tight and sore on the weekend and i was super scared but the doc says it's my chest muscles expanding and getting sore. i never knew cleaning the floors could do that. lol. going to the beach tomorrow and cant wait to get sun! i feel like the sun also helps us cfers. vitamin e! i think. i hope the water isnt too cold and i hope there are no jellyfish. i'm deathly afraid of those things!! laters.

Any CFers wanna make easy money????

There is a market research company asking CFers questions about our medications and our opinions on CF products. If you qualify, you get paid $50 and for referring you I will get $50 as well. If you are interested, please reply back to me and I will email you the info. If not, then I will pass this on to other CF friends. If you qualify for the study I , wendy victorero, will get $50 for referring you. This sounds pretty fair to me! If your like me, then you could use the $50 right now as well. They ask you: what kind of inhaled medications do you use, what kind of antibiotics do you use, what kind of neb and compressor do you use (brand). If you qualify, youll get a $50 check. I do a lot of the CF market research studies, and you usually get your check within 3 weeks.