Wednesday, April 25, 2012

just saying some stuff.

omg, i hate this new blogger stuff. anywho i've decided i want to do photograpy for a living. i want to get into a school and see how i do. i think there was a reason why my first job was at a photo lab and why my family makes fun of me for uploading pics by the time they check their emails. lol.

something a cfer wrote on her blog really got me mad. some of these young cfers don't know what we older cfers went through and think it's so easy now to deal with cf. GRRR!!!
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the picture i put of cfers breathing through a straw is real, a real cfer would understand what it means and not tell people in a blog that it's not a true picture of cf. Just because you're health is amazing now doesn't mean cf won't bite you in the ass someday. this is what i wanted to put in this person's blog, but didnt:
oh my dear, you are a young cfer ready to take on the world. lol. i used to be like that too. i would think, why do people say cf sucks, i work, go to school, and party all the time. Reality does set in after a while. I must admit i did party a lot and maybe that's why at almost 35 i have an fev1 of 30%. When i was growing up it was live like you're dying. no one told us about going to college it was all about trying to make it to high school or maybe it's the way my parents raised me to think. sometimes i do wish they would have pushed me but that's another story. I guess the docs put the fear of cf in us but i'm glad. I have enjoyed life to the fullest, i have done tons of stuff i wish maybe i would have passed on but it's all about life lessons. sometimes the only way to make people listen is to tell them the worst scenario. some people with cancer don't need chemo or radition and are great but some need surgery, chemo, radition and much more. do you think cancer awareness is too much? NOPE!! It makes me mad that younger cfers don't see how crappy it was before all these great meds and research. IT WAS TOUGH!! Don't take the struggle that we are going through and have been through and have lost so many friends to just because you think people will take pitty on cfers. fuck the pitty, it all about the awareness!!

Friday, April 20, 2012

My back!!

my sexy pose. lol.
best wedding cake toppers ever!!!
the cf group!
me and my love
Well almost a week ago sunday i was out with my boyfriend and his dog just walking around our neighborhood. I went to go pickup the dog's ring and when i went to go down and get it i swear my lower back went out. I was in so much pain i couldn't move. my boyfriend was like "are you ok"? i told him i had to go back to the house cause i could not walk at all. i had all these little muscles spasms and my boyfriend had to push on them. wow, it hurt like hell.
I went to my friend's wedding and it was so much fun. I feel bad my boyfriend doesnt like to dance cause i love it. I must admit i dont dance as much as i used to, i get tired faster now. especially with spanish music.
My friend katy had the best proposal i've ever seen. her boyfriend really went all out, it was amazing. just reading her post made me tear up. Do i think my man will do that? Heck no, he's totally a non romantic, he's the type that you would have to tell him what you want. He's not a surprise kinda person. i'd probably even have to tell him the kind of ring i want. i mean when it comes to presents, he isn't that great at them. I'm not putting him down, i love that man more than i've ever loved another man. I mean he's helped me so much. I believe you have to take the good with the bad, no one is perfect and that's what makes us all human. His love is so amazing. I think he's kind of intimidated cause about 3 of my friends have gotten engaged this year and it's only april. lol. poor thing, i don't want it now, i want it when we are more ready. ;)

Wednesday, April 11, 2012

Spiriva

i read my blog from 2009 and saw that i was doing the spiriva study and my fev1 went from 30 to 34. well i called my nurse and i'm back on it!! hopefully it'll make a difference, especially that now i'm working out like crazy and doing cpt and vest everyday, thanks to my amazing boyfriend! About my last post, maybe i'm jealous of those with transplants that get to do what they want. i mean honestly i've done everything i've wanted, i know there's more but i know my limits. I went to hawaii, i've gone snowboarding, i've gone on many cruises, i've been to the top of a volcano, walked through a lava cave, been in a rain forrest, snorkeled in hawaii, the keys, bahamas, cancun. i've been to many different states and countries like Cancun, Cozumel, Bahamas, Bimini, Five different islands in Hawaii, etc. I've done a lot in my 34yrs. I'm just speaking my mind and i'm just saying. :)

Monday, April 9, 2012

Invincible

Well to start off i want to say that this is in my opinion. I always start off the same way. lol. So many of my CF friends have gotten transplants, which is amazing. What i don't understand is that i feel like many of them don't know their limits. They don't wear masks, they go to very populated areas, and i just feel like they play with fire. Maybe it's cause i've lived my crazy, wild days and i'm more cautious of things. Most of the people who get the transplants are in their twenties so i understand why they want to live their lives and have fun. I guess i just wouldn't risk my new organs so quickly. Also maybe if i did get a transplant and still lived in a bubble i'd get rejection. I don't know it's just confusing sometimes how different transplant centers have different rules. some say be around kids, some don't. some say wear masks, some don't, some say travel, some don't, some say you can be in hospitals, some say stay away! I've gone through the transplant eval and have talked to the surgerons so i've asked them questions and they were very serious, they weren't all rainbows and butterflys when it came to transplant. I was able to stay stable and off the transplant list. I just hope my cfers who've gotten transplants don't play with fire too much. I remember a cfer who did a cross country trip a few months after transplant and afterwards got chronic rejection and isn't here. I guess i'd be more careful, if it seems like i'm being a debbie downer, it's ok cause i'm 34 and still here so i must be doing something right! ;)