missing my daughter

Being in the hospital has always brought me down and made me depressed. Now i know everyone in this same postition gets like that but what also doesnt help is my beautiful little girl is sitting at home waiting for mommy to come home any day now and that day seems to never come. My daughter is my world, my reason to breathe and my reason to fight. I never thought i could love someone as much as i did so quickly when she first came along. Being so sick i miss out on so much. when she was first born i didnt get that mother daughter boniding time..i have missed out on so much of her life because of CF. Ive missed milestones and her learning new things. I even missed her baptisim and her 2nd birthday. Ive missed many holidays. it breaks my heart everytime i have to come in here..watching her walk away after dropping me off. yes i do get to talk to her on the phone when i am in here and we do get to web cam but its just not the same. everyone always asks why i dont have her come visit while i am stuck in here if i miss her so much. and really as much as it hurts its quite simple why she doesnt come. The hospital is full of germs and its really not good for us to even be in here and with her being so young and not having a full and great immune system yet its better off she dont come so that way she doesnt catch anything or end up sick cause i would not be able to handle knowing she got sick when she came to see me. so yes i do miss her and wish she could spend every minute of every day with me while i am in here but it just isnt logical. I miss you Nevaeh, mommy will be home soon.

In the hospital..yet again

Just this past year i have been in the hospital more then i have been out. I did my longest stay ever this year as well. i was here for 58 straight days from February thru April. I am becoming very antibiotic resistant from being in and out so much and on antibiotics for so long all the time. I was just here in the end of June for about a week, i went home the day after fourth of july and was on home IVs for 2 weeks. During that course i knew i wasnt getting any better but i wanted to be out and at home so bad i continued on and pushed it all off until my clinic appt. yesterday. I am having fevers, cough that is unproductive because everything is so thick and stuck, blood in the sputum, pain in the lungs, and every joint, muscle and bone in my body aches. My PFT's were down again. Got a chest x-ray and it looks horrible. Sputum culture shows that i have grown out not only 1 "bug" but 3. :-( MRSA, Pseudonomas and stenotrophomonas. So they have loaded me up on IV antibiotics once again. I am on Vancomycin, Tobramycin and Cefapeam. This will be a 2 week course and i am hoping at the end i will be back up to baseline and able to go home. The nurses here are amazing so that does help the days go by with some sort of ease. i just cant wait until its that time and i can finally start the process and get some new lungs. All i want is to laugh without a coughing fit after, breathe without it hurting and to just have a some what normal life. Im tired of the medicines controlling my life, the dr visits and hospital stays..

My story

Well i have had CF all my life thats obvious but i actually didnt find out until i was 17 when i got real sick. i had been sick all my life with phnuemonia, sinus problems, anything u name it i had it so many times, but the Drs never really looked into anything. My sister was the same way and she was actually misdiagnosed with COPD and had been asking for a sweat test to be done and no1 would do it. Then a new dr finally came to the practice and said yes to doing a sweat test. So at 21 she found out she had CF and that lead them to do a sweat test on me and BAM i find out i had Cystic Fibrosis. Since then everything has been so up and down. Im in the hospital more then im at home. Ive also got many GI issues, GERD, Colitis, Gastric Paresis and had to have my Gall Bladder removed in 08. Ive been stuck with MRSA which is really bringing me down. Ive also got CF related diabetes. Ive had lots of issues with veins blowing and being to weak. so ive had my share of picc lines and mid lines. i got my first port when i was 17 and that 1 lasted me about 4 years. i got my second port in 08. to me the port is the best invention ever!!

CF does not define me I define me & this is who I am.

My name is Jessica, I am 23 years old & I live in Florida. I have a beautiful daughter named Nevaeh Jesnali. She is 2 years old & is my world. she is also CF free!!!Life can be hard but i really got to take it one day at a time. Just when you think things can’t get any worse, they do. I’ve learned that life is like an hourglass. Sooner or later, things have to turn around. Life experiences definitely make you grow up faster and I have a life time of them. There for ive learned that you always have to have goals and try to follow your dreams. Its true sometimes they do come true.Life comes with no guarantees,no second chances, you just have to live life to the fullest. laugh as much as you can,tell some1 what they mean to you,dare to be different,hold someone's hand,comfort a friend,fall asleep watching the sun come up, stay up late, & smile till your face hurts. don't be afraid to take chances or fall in love and most of all, live in the moment because when you look back someday, knowing you have no regrets is going to be what makes you smile.