Doc appts.

well i've been dealing with some bad pft's. i don't know why i'm back in the high twenties. i'm usually in the low thirties. i think i might just be having a bump in the road. my weight is fine, my sats are fine, and i even went to seaworld and walked the whole park and didn't take a break. i have no clue why i do so bad on that test. i feel like my lungs freak out when they know i have to do the test. well i'm on a research study but not for new meds. just on tobi and cayston to see if that makes a difference in my lungs. this is a short post. will update soon. my next doc appt is in april.

my sis's wedding, doc update, ect.

My sis got married on feb. 9. i was the maid of honor and i was so stressed out. i did a lot for that wedding and spent a ton of money. well i'm negative in the bank now. lol. My boyfriend wasn't in the greatest of moods because the day before he had worked and then drove all the way to miami. He was beyond exhausted. also he gets anxiety attacks and also there's something else that he doesn't like about parties so i'll just leave it at that. He got mad at me cause i caught the bouquet. i did it to be with my cousins and just everyone, i didn't do it to be mean. he took it the wrong way and i guess now that we talked about it, he sees my side and i see his. so the reception wasn't really that great for me. i also sucked at the maid of honor speech. the best man had his written on his i-phone. ugh, so bogus. lol.

So my sis got married on saturday and monday i had a doc appt. i got 30% on my pft's which were a little down but it's around my baseline. i had a new doc see me and OMG, he was so weird. i swear it was like he was on speed. He was all over the place, he said oh, i see you're sick and i told him no, i'm just tired. then he told me about my vitamin levels and he was like you vitamin A is low and then he's like no it's your vitamin D. Then he put me on levaquin for 3 weeks!! i was so mad, i never take antibiotics for more than 2 weeks. Whatever, so then i left and my Normal doc calls me and says "why didn't you tell me you were sick" i told him i wasn't sick that i told the other doc i was stressed out and tied. The he tells me to come in the next day for another pft test. which i was already stressed out about the antibiotics and the new doc. Which btw, other cfers had told me this new doc was horrendous and also one of my friends had passed away while in the hospital under his care. I'm not saying that it's the docs fault but i do feel like you should listen to your patient when they are telling you they don't feel bad and it was just a bad day for pfts. Don't give them antibiotics when they don't need it so then you're resistant to every drug. UGH!! so the next day i went and did more pft's and they were the same. The doc says that if i'm not better we will need to talk about long-term iv's and i was so mad, i could freaking  see smoke coming out of my nose!! My doc has never been like this, i feel like he's letting this new doc run things. Some docs have protocols which i can't stand because every patient is different and shouldn't be a number on a paper. This new doc seems like one of those.  I have to go back on monday for more pfts and also i'm doing a research, not on new meds just on tobi and cayston instead of colistin and cayston. I've been working out like crazy and i pray my pft's will be a couple of points higher. I just get so nervous when i do pft's and i've tried everything to relax. yoga, breathing techniques, meds. nothing works. I don't believe in long-term iv's. i feel like that will kill my spirit and just make me more depressed. i feel like once you get resistant to everything you have to get on the tx list and that's the docs hidden agenda.

Otherwise, i'm back in spring hill and loving it. i love the quietness and the calm. I've actually started to love this place. still boring but i don't mind. miami is full of traffic and drama. So today is thursday and i have to go to miami on sunday for my appt on monday. another full day. so i hope and pray everything works out so i can come back on tues or wed the latest! here are some pics from the wedding!! :)

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.

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*

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.

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!! :)

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.