Thursday, December 27, 2012

future


i've been feeling perfect since my last little home sick breakdown last week. everything has been great. my boyfriend got me a beautiful watch for christmas and i love it. just have to put this out, i have a huge pet peeve when it comes to texting. i hate texting someone and never getting an answer back, how rude can you be!! So it's been an awful season for cfers. so many of us are in the hospital and super sick. makes me wonder if it's going to happen to me and if it does will my family and boyfriend would be able to handle it. i don't think about myself just about others. it's so scary to think about. i really don't get how some people who come so close to death just get back up and go do the same thing that got them there. like i've said before some people think they are bulletproof and i just want to shake the hell outta them. ugh another random thought i know i need to go back to school but i really dont care much for it. i hate getting sick from other people like i used to back when i went to college. but if i have to i will. i wanna go skiing next year hopefully my lungs will be able to handle the vermont mountains. i love snowboarding! i've only done it once and i got pretty banged up but it was so worth it. i didn't do that bad either, it was my first time in snow and i really held my ground except when it came to trying to stop. i almost ran over some kids. ok, well that's all. until the next one.

Tuesday, December 18, 2012

HOME SICK, PANIC ATTACKS, Feeling So Confused!

well last night i had a huge panic attack. the only thing that kept me sane was my boyfriend. he held my hand the whole night. i feel bad saying this but i'm home sick. i haven't been in miami in over a month and i guess i miss my family. i don't know why this panic attack has come back. a few weeks ago i had a breakdown. i didn't see my family on thanksgiving and sometimes my boyfriend just wants to chill at home on the weekends cause he works so hard, which is fine but i get such bad cabin fever. ugh, i just want this feeling of anxiety to go the fuck away!! i want to feel normal again. i had my period last week so that why i thought i was feeling low but it just doesnt go away. i mean i'm happier now than last week but this panic attack that i had last night killed me. On another subject i really get jealous that cf males can use ivf and have kids. no risk on their health cause the woman carries the baby. i wish us cf females could have an easier time finding surrogates and also paying those huge bills. i know some insurance companies pay for ivf so they are lucky, i just wish the males with cf would remember the females who can't have kids. sometimes i feel like they gloat or whatever. sorry i'm doing this while i'm under anxiety. God, i pray this is just a little bump in the road. Also all the news on facebook as gotten me really sad with so many cfers dying or sick in the hospital. i think i just need a break from everything. maybe going back home for a little bit will be good but i don't want to leave my boyfriend. i feel so torn apart. :/ i hope my psychiatrist calls me back about my meds. maybe i need an updose. *ugh*

Wednesday, October 24, 2012

To do a Tune-up or not to Tune-up??

well it's been over 16 months since i've had my last hospitalization. Last time i went in it was because i coughed up blood and i had a small spot on my lung that looked like early pneumonia. So now i'm asking myself if i should go in. I feel ok, i mean my pft's havent really moved and i really don't know if IV's would change that. Also sometimes tune-up's make you worse for some reason. Then there's the hospital. There are two different ones here in miami that my doc can put me in. One i love and the other one i hate. The reason i hate this one certain hospital is because i was there for 4 days and left in tears and was transferred to the one i love (thx god). This hospital that i hate had me in tears because, well first off None of the staff knew what CF was. Second the med sch. was so outta hand, they gave me my meds at all the wrong times and they didn't know what most of them were even for. Third the therapist didn't know how to give cpt, i was enraged. Fourth, i needed 3 IV's while i was there which was only 4 days. Fifth, i asked for a heating pad for my back which was killing me from all the coughing and they gave me some 1950's machine that had tubes connected to a heating pad that leaked water all the time. I swear they were trying to kill me!! Last and not least The NURSING STAFF was HORRIBLE, they were so incompetent i just couldn't believe they were RN's. One nurse came in and then the aid came in as well and i was telling them about the old heating pad and then they started talking creole, right in front of me and my  mom. I guess they didnt think i had ever had a job because one thing about working in a hospital is that HIPPA says you can't speak another language infront of the patient because the patient will think you are talking about them. So when this happened to me i was livid to hear them talking in my room in front of my mom and i in another language. I told them please speak in english in my room and the nurse said, We aren't talking about you, i said that's not the point. Then the nurse manager came in and i told her how horrible the nursing staff was. Then patient relations got into it and they opened a case about how i was treated, i never found out what happened but i hope some changes were made. i hear they staff is better now and that the hosp has even opened a pulmonary rehab clinic but just thinking about having to go in that hospital brings me to tears. I'll see what the doc says and hopefully if i do go in i'll go in the hospital i love, where everyone knows my name and knows what cf is. Also if my pft's are up i'm not going in at all. so we'll see what happens. ugh, what to do.

Wednesday, July 25, 2012

Just some Ramblings......


I was never the girl who was part of a group. I always wanted to be though. I tried so hard back in middle school and high school but was always pushed to the side. Sometimes i still fell that way. I have amazing friends in miami but now that i live up here in spring hill i've been trying to connect with people around here but i feel like i'm getting the cold shoulder. In these times of social networking people become close to the point that they say they love each other and i respect that but is it true? I've never been a girly girl, i hate the phone and i hate talking online through webcam. Maybe i don't put myself out enough? but i do and maybe i come off too strong? ehhh, whatever wondering about this kind of stuff can make a person go crazy. Also i feel like people talk behind your back and you get outstead by everyone. If i have an opinion that's different from everyone i feel like it's a bad thing to tell. I miss my miami friends more than ever. I guess hispanic people do talk shit about their friends but it's like roasting them, it's all in fun. Others take it so seriously. Thank god my bestfriend will be up here tomorrow. we are going to do some fun things like waterpark and busch gardens. yay!! Also i don't love pink nor hearts or other girly things. i'm not super excited when i see rainbows or a hello kitty purse. I'm just an individual. It's kinda hard to read things and believe them. especially when i work my butt off at something and don't get the same results and when i question it, it gets a negative reaction. i'm sorry but somethings sound like B.S. Whatever i think i might have to clean house real soon cause i'm not liking certain things. ok, back to my loner ways, which i rock at and i love!! :)

Friday, June 22, 2012

Working Out and Neck Pain!!

i've been working out a lot lately. last sunday i did my home pft machine thingy to see how i was doing. at first the numbers were not so great but then i did it one more time and i got 1.01 fev1!! i know this is just a little machine and who knows how accurate it is but i was so happy. so this week i've been doing my workouts and i think since i'm going to get my period soon i've had a lot more to cough up. well my neck is killing me from so much stress from coughing. earlier in the week it was my chest but now it moved to my neck. it hurts so much to cough or just move my head around. today i did another pft and the highest i got was a .94, i wasn't too happy but it was better than i thought it would be. this weekend we were supposed to go kayaking but it's going to rain the whole weekend. so i should rest today but i want to workout. not sure what to do since it's almost 3:30 and i've been in bed all day. lol. i feel like a lush. ok, so i'm gonna get my self outta bed and go out. :) laters, wendy v.

Tuesday, June 19, 2012

Family.....

Well what can i say, it's been a rough week and it's only tuesday. I'm my sister's maid of honor but since i live 5hrs away from her and my family i feel like i've been left out. I call my sis and she never tells me if i need to do something. Yesterday i get an email from my cousin who is hosting the bachelorette cruise we are going on. I was super upset she invited like 5 of her friends. I really can't stand them. I've tried to get along with them but they are so shallow and plastic. They are true mean girls!! I'm gonna feel so outta place, i mean they wear makeup and heels to go to the pool. All with fake boobs and fake personalities. They look at me like, Oh it's the sick sister. I'm dreading this cruise. Then i starting thinking about my family and how they see my CF. Actually that's the problem, They Don't!! It's sad to say i have a huge family and they have never once walked with me at a cf event or helped me raise money. I feel alone sometimes, my family doesn't understand. My sister feels like i got all the attention from my mom cause of my CF and even says i try to get attention by "acting sick". I'll admit, i can feel fine one day and crappy the next. My sis doesnt like me, i know it. We have totally different friends and see the world differently. I wish my sister would call me and ask me how i'm feeling, or if i need anything. When she comes to see me in the hospital (which is rarely) she needs to bring people so she doesnt get bored. I wish she was closer to me but she says she feels left out by the close relationship me and my mom have. My sister has friends that she knows i can't stand. The friends that only have "expensive" taste. Why does she dislike me so much? I sometimes wish i didn't have cf and we'd probably get along better. My mom gets sad because of this often. I do as well. i've tried to let my sister into my world but she doesn't have any feelings towards it. I have so many cousins and aunts and uncles and now that i live away from them it's like i don't even exist. I had such a hard time falling asleep last night. My boyfriend didnt make it any better, this weekend on saturday i coughed and he told me i had an ear piercing cough, i'm still fucking mad about it. REALLY?? My cough is ear piercing!!! Fuck Everyone!! I didn't tell him how much it bothered me but i will tonight when he gets home. that's all for now, wendy v.

Thursday, May 31, 2012

Bullys!!

I feel so bad for those kids who kill themselves over bullys. I was made fun of  a lot when i was in school, i got my pills taken away from me in front of everyone in the school cafeteria and called a drug user, i was called a nerd in front of my math class, i could go on and on. All of this not cause i was gay but because i had Cystic Fibrosis. Of course, no one knew i had CF in school because it wasn't any of their business. I think the internet and social networks have a lot to do with these kids getting so depressed and harming themselves. I don't understand why bullying is so prevelent now a days. I know back when i was growing up people who were gay didn't "show" it as much as now. They kept it secret until they were adults. I don't think kids who are gay should try and not be so in your face about it. I don't mean to be mean but kids will make fun of you. Stick up for yourself, try going to a self defense class and those bullys will respect you and go away. whenever you are different people will always comment and you must have tough skin. That's how i got my tough skin, i don't let people run over me cause i'm short or cause i look young or cause of my CF. People sometimes stare if i cough and i just don't care. i used to care a lot before but i hang out with friends who know about my CF and will stand up for me as well. Sometimes people need to be slapped across the face for being so stupid. If i have to wear my O2, i wear it. i have no time to think about what other people think, if they keep looking i will tell them. if they got time to stare, i got time to share my story with them. ok, can you tell it's my time of month. lol. that is all. :)

Monday, May 21, 2012

Doc appt!!

it was a good appt!!! i actually went up on my pft's! i went from having only .79 to .84 getting up there to a liter! i know it sounds crappy and it is, but it's a step forward. i'm super happy in only 6 weeks without iv antibiotics i was able to get a higher pft result. i guess my working out is actually working!! my boyfriend says he's super proud of me and so am i. :) i go back to spring hill tomorrow and back to my eliptical and my man. i have a 5hr drive ahead of me so i should get some good rest. i have to pack a ton of things before i leave. i talked to my psychologist and she really helped me see that just because my boyfriend isn't the most romantic doesn't mean anything. he's an awesome person and that's that!!!

Sunday, May 20, 2012

romance

so i've been in miami for over a week now. i go back to spring hill on tuesday. since i've been home i've been catching up with my friends and having tons of girl talks. there's this one friend that was asking me if my boyfriend was romantic, honestly he's the most caring, loving person but not romantic what so ever. it kinda makes me sad. i would love roses when i get home or gifts. i mean i know he loves me but when i hear about what romantic things guys do to their girlfriends, it breaks my heart mine doesn't. he knows he's not romantic, i mean i'll ask him to get me a present and he gets me the wrong thing, at least he gets me something i guess. he does my therapy and takes care of me when i'm sick which is so important to me, but why do i feel jealous when my friends get watches, rings, purses, sunglasses from their boyfriends and not me. i also think to myself, he already does so much for me, maybe i shouldn't ask him for more. is it fair for me to just do that. i mean he wants me to tell him what ring i want if he proposes me to. he's so unromantic, it just hurts sometimes. i dont know if it's my horomones and i'm freaking out about nothing or if i should bring it up? i don't want to make him feel bad either. i miss miami so much, i hate living so fucking far away. i do think i'm ovulating cause i'm mad as hell for no reason. i think memorial day weekend we are going to the keys, we'll see. tomorrow i got a pulmonary doc appt. i hope all my working out and extra therapy will help me. it's weird cause i feel more stuff moving all around in my lungs, it bothers the shit outta me. ugh. i also have to do a 6 minute walk test for the stupid oxygen company, hello fuckers my pft's are at 30%, fuck yeah, i need o2. before that appt i have to see my psychiatrist and then after the pulmonologist i have an appt for a microdermabrassion. it's gonna be a long ass day. so not looking forward to anything at all. wenv.

Tuesday, May 8, 2012

Ambition

wha'ts my ambition in life? what do i want to be when i grow up?? well i'm 34yrs old and i should already have a career but instead i'm on disablility and i'm a stay at home girlfriend. i must admit housework is hard. there's always something to clean up. What's weird is my drive, my ambition, my need in life is to just live! i love waking up doing my meds and vest, then working out in the afternoon, running and doing the eliptical and walking the dog. I love when my boyfriend gets home he give me cpt and then i do my  night meds. If i had a career there's no way i would have all this time. i love that my health is the first thing on my list of things to do. Is that bad? people think i'm not striving for something or becoming something. i've always hated school and when i did go i got super sick. i can't do online classes cause i like being in a classroom enviorment. i wish they had classes for people with low immune systems, that would be so rad!! also i have no idea what i would want to do as a career, i have no clue what i want to do. I started working at the age of 16 until i was 28. even worked two jobs at one time. i worked in hospitals and a photolab. loved my photolab job but don't know if i could take pics for life. i love my family and i'll see them soon. i'll be in miami on sunday for about 9 days. i cant wait to hug and kiss my nephew. i will miss my boyfriend a ton. soon my nephew will be 3 and he'll be able to stay with me up here overnight. i can't wait. i love him so much!! while in miami i have to go to my endocrinologist, psychiatrist, and pulmonologist. it'll be a busy week. Oh, i went to a doggie beach here in bradenton and it was such a blast!!! here are the pics!!




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! ;)

Monday, March 19, 2012

where to start, ok this is gonna sound like i'm hating but that's not the truth at all. some couples get engaged and it's all good but some just go nuts about it. my sis is engaged and i swear it's all been between the family. she's never put pics on facebook or status. I guess i've never been the one to be all into weddings. i do believe in relationships but i'm not so sure about "soul mates". i mean i feel that my best friend is more my soul mate. lol. i've seen a lot of marriages fail after yrs of marriage and i've seen people stay together even when the other person in the relationship is cheating. do i want to get married? well, if it means that i lose all of my benefits than i guess no. i did tell my boyfriend i wanted to get engaged and maybe we can do a ceremony but no official stuff. "The ONE" that is such a burden to put on someone, why not this is who i'm sharing my life with. I mean "eternity", REALLY?? I love my boyfriend and i know that he'll do anything for me but would i put all that weight on his shoulder? Fuck no!! i know how to take care of myself and i don't need anyone to make me smile or be happy or any of that mushy crap. Will i be mad if my man can't come see me in the hosp or sleep there? Nope, i know people have lives, jobs, and bills and i know how the real world is. My parents are together, they were married then got divorced and then back together. They didn't remarry so they are legally divorced which is fine with them but sometimes they act like brother and sister and fight about the smallest things. i think that's what happens to all couples after a while. it just turns into someone who you become complacent with and just share the good times and bad. ok, that's all i've got to say about that. lol.

Tuesday, February 21, 2012

Adult situation, read at own risk.

Transvaginal Ultrasound before abortion bill: This is a bill being passed in virginia. I think this bill is just horrible. why? well i had one done many yrs ago when i was 19 and i had an unplanned pregnancy. I had the to make the horrible choice to terminate the pregnancy. I was dating someone with a drug problem and was abusive. I also have my CF which at the time my pfts were up in the 90's which i dont think would have been a problem to carry the pregnancy. This procedure was the hardest thing i've ever gone through. First off, the doctor who did it didn't want to do it but because he knew about my cf condition and the insurance would cover it he went along with it. before the procedure he gave me a Transvaginal Ultrasound and this was my first time at a gyn and i didnt know what this thing was going to do. All of the sudden this thing is in my vagina and i look up on the screen to see this beautiful fetus i was going to destroy. Everyday of my life i think about what i did and how bad i feel now. I'm 34, single, no kids and just the thought that another woman would have to have this procedure done before they make their choice is unbelieveable. Also i had this procedure without any pain meds. The doctor only gave me motrin and i felt everything. i was totally awake and it was such a horrible experience. Please don't judge me because of this. I love kids but at this time of my life i felt like a kid myself. i was 19 and so confused about life and i wasn't ready, also i wasn't even taking care of my health. One day when i go up to heaven i hope to see he or she and be a mom and ask for forgiveness. I just wanted to say that people who have abortions aren't women who dont care, they do care and they are doing what they think is right. I dont regret what i did but i wish i didnt have to see that image on the ultrasound. it will haunt me forever.