Sunday, November 3, 2013

I'm 36 and i have CFRD. I wish people understood that sometimes whatever you do, how much you take care of yourself, CF happens. When i was in my late teens and early 20's i worked, went to school and my lung function stayed great. Then my late 20's came and the body changes, your stamina might not be the same as before. is it cf or age?? who knows. I get mad when people think that cfers go into a downward spiral because they didn't take care of themselves. No, not true. CF i feel sometimes is a delayed disease. I'm not saying that everyone will get bad, i'm just saying that sometimes it hits you without you changing your routine in life. I didn't have the chance to take time to workout and do therapy all the time. why? well i had to work to get insurance, back then i couldn't stay on mommy's insurance, i had to get out there and work and i didn't qualify for SSI. I did my best and i'm proud of where i am. Do i regret going to clubs, crazy vacations, and just being wild with my friends? Hell No!! i lived life and i guess now i'm working hard just to stay living it. Yes, my pft's are in the high 20's but i do everything i can to keep them there or to get better. Once you get scarring in the lungs your lung function won't come back. Also i'm at a perfect weight for my height and that has helped me stay healthy but lung function wise it has stayed the same. i meant to put this on another blogger's site but it wouldn't go through.

Thursday, August 8, 2013


Today was my grandma's wake/burial. I thought i knew how i was going to react but i totally fell apart. I looked at her in the casket and she looked nothing like herself. i've seen many dead bodies, young and old but never have i seen someone who didn't resemble themselves. i literally felt myself start to panic and i just thought how am i going to make it 4hrs here? my family and friends really helped me out. i still feel really anxious and just stressed out. i think to myself if i can't handle my grandma's funeral what if someone like my mom or dad pass away? they are my life, i'd be so lost. i want to feel normal which right now i don't. i'm not sleepy nor do i want to sleep. i'm scared of my dreams, i don't want to dream about my grandma. about how i saw her in that casket. i just don't want to break apart. i need to be strong.

Also my MRI came back normal. not sure if i updated everyone already. my mind is really scrambled.

Sunday, August 4, 2013

Not about Me anymore

My grandma is in ICU. Her heart is weak from pneumonia and i'm unable to be with my family at the hosp. because as we all know cfers are super magnets for germs. It's ok cause i called my CF doc who works at the hosp my grandma's at and he's actually helping by telling one of his friend's who is in charge of the ICU to watch over her health. I'm happy to say that yesterday was very scary, she was intubated and her heart was very weak. She was only breathing at 20% Today she's breathing at 40%. I know she'll get through this. She's 76 and i know it will be difficult for her to come back but i feel like she still has some fight in her.

The lesion on my spleen has taken a back seat for now. I tried to read the picture CD they gave me but it made me more confused than anything. I usually would of ask the Tech if they saw anything but i was to scared. I also asked my doc if he had any results and he said by Monday. I told him i was so stressed out with everything going on and his response was "RELAX". easy for him to say. lol. I have this horrible thought that the reason i haven't been able to go back to spring hill where i live with my boyfriend is that there's a reason i have to be in miami. maybe it's cause there is something wrong with me. I know it's crazy to think like that but my brain works in a fucked up way. well that's it for now. I hope to have better news tomorrow or in a few days.

Friday, August 2, 2013

MRI today

Today was D-Day. I got the MRI done on my spleen. A procedure which was supposed to take 20 mins took an hour and a half. First the tech couldn't find a vein since i needed contrast with this MRI. it took 7 times to get it done. I'll take pics of all the black and blue bruises which hurt a ton. Also i had to hold my breath for a very lone time which was very difficult when you only have 27% total lung function. They gave me a picture CD so i can look at the MRI and my spleen. I'm not sure how to read it but my boyfriend and i will figure it out. I'm not looking at it without him. I haven't seen him in over a week since he's up in spring hill 5hrs away. I miss him so much. It's kind of weird how he tells me that he wants me home when he comes home from work cause it makes him feel so much better. it makes me happy but i've never had that kind of affect on someone so it's scary too. I don't want to let him down. Ok, i'll write back next week and we'll see how things go. Whatever happens, well honestly if it's bad news i'll try to handle it the best i can. i'm not going to lie it's going to be pretty upsetting. ugh. :/

Tuesday, July 30, 2013

A Lesion on my SPLEEN????

can't even fathom what this means? i try to tell myself it's nothing since the doc doesn't think it's anything but a lesion on my spleen? really?? wtf! i'm i going to die?? what if i do need surgery? i only have an fev1 of 29% at best. i can't be put under because i'll never come off the vent. i have an MRI with contrast on friday which will tell us more. i'm going back to spring hill on saturday but honestly i'm a fucking wreck! my mind doesn't stop racing and neither does my heart. what could it be? could this be the pain i've been telling everyone about and no one listened to? fuck, i hate thinking this shit. what the fuck did i do to deserve this crap. i want to go back to my boyfriend and just be fine. ok, if this is really something that i have to have surgery for i guess i'll have to be admitted and have it done. don't know how long i'd have to stay but i'd want to stay until i could cough again and be ok. fuck, this is the type of shit that when people go in for it turns out worse. god i pray that next week i'll be saying it was nothing but for now i'm scared as hell. :(

Wednesday, July 10, 2013

Following Dr's Orders

Lately i've read a ton of posts that read "i'm glad i didn't follow my doctor's orders" when it comes to pregnancy with cf. I'm so happy for the cfers who were able to carry the baby and have the baby, it's great. I was actually pregnant when i was 20yrs old. i told my doc and my family and they said it would be best to terminate it. Honestly i don't think i was ready for a baby. I didn't feel like it was a wrong choice, i think i wouldn't of been able to handle the child and myself. I really don't think i would be here if i would have gone through with it. I believe every woman has a right to do whatever she wants to her body. If men carried children i'm sure abortion offices would be in every corner just like starbucks. I mean men don't lie, right?? lol. That's why mostly love bill maher most of the time. Except when he talks about guantanamo bay but when he speaks about religion and the old crypt keepers that are running our government he is right on.

Also i want to tell people that cf is a progessive disease!!! believe what you may but if you don't think it will catch up to you, you are lying to yourself. I didn't believe it would ever catch up to me. Well by the age of 28 it did. was it my fault, partly yes and partly cf. i should have taken care of myself better. i should be done all my meds and therapy. It's kind of like those people who have cancer that don't even know it. It spreads everywhere and nothing will help. That's how fast cf can kill you as well. So many of my friends dont deserve the shit other cfers say. Like they should have done this or that, it just hurts like hell. They probably did more than you but cf is different with everyone. everyone has a different physiology and anatomy and cf. CF has over 2,000 mutations and it can be as mild as just having tummy aches to killing a child of 5yrs old. People need to have empathy for everyone and give support to everyone who has from high lung function to low lung function because we all need it.

Wednesday, June 26, 2013

Always Greener on the other side

Have you ever wanted someone else's life?? Ever seen pics of their perfect world where they are a lawyer and hubby is a doc? Seen pics of their beautiful vacations and how much fun they are having? Seen pics of her pregnant and still looking gorgeous? I know they say the grass always looks greener on the other side but what if it is??

I dislike living here in spring hill which is 5hrs away from miami. I've told my boyfriend this and he knows i want to be closer but he still has to finish his contract here. We have to stay for a year and a half more. I know i say i love being at home but when there's no one to be with it sucks. I'd love to be close to miami so i can hangout with my cousins and friends. They would be able to come over to my place and i can cook dinner for them. I must admit my boyfriend isn't the party type at all. he loves his home quiet and i respect that. I've been thinking what can i do to change things?? How can i get that perfect life?? honestly i feel like i've been dealt some pretty shitty cards in life. i've been through all the bad things someone has to go through to get a better card. the abusive boyfriend, the cheating boyfriend, the health issues, the family drama, being used by men, working full-time even though my health suffered, going to college (for a bit) even though my health got worse, and i still feel like i've done nothing and have nothing to show for it. ugh!! it's just one of those woe is me days. I know i have tons of great things, awesome parents, great few friends, great boyfriend, great sis and family but i guess maybe as humans we always want more. I know i can go back to school but i'm actually afraid of getting sick from the students always coming to class sick. i'm not even sure what i want to do. i dunno, right now i'm just sleep deprived and i have an antibiotic brain so i'm not very coherent. lol. gotta go take the doggie out to poop. ahhh, my life is wonderful. haha.

Thursday, March 14, 2013

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.

Thursday, February 21, 2013

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!! :)