I Grew Up In and Out of Hospitals

WELL HI IM JOHANNA. IM 20 YRS OLD FROM MIAMI FL. I WAS BORN WITH SB. I HAVE A SHUNT. ITS NEVER BEEN CHANGED. THE NERVE BAG WAS REALLY LOW SO I DIDNT END UP IN A WHEELCHAIR. I STRUGGLED WALKING WHEN I WAS YOUNG. I HAD FEET SURGERIES. AN ANKLE TRANSPLANT, I DONT KNOW HOW MANY FEET SURGERIES I HAD BUT IT WAS ABOUT 4 OR 5 TO MAKE MY FEET STRAIGHT. I DONT HAVE CALF MUSCLES. BUT I HAVE REALLY STRONG LEGS THAT HELP ME WALK. I WEAR LEG BRACES. N I USED TO HAVE A WALKER WHEN I WAS 4 OR 5. I HAD A BLADDER EXPANDATION 2 TIMES SO THAT I DIDNT PEE ALOT BUT IT DODNT WORK. I USED TO TAKE DITROPAN TO SUPPOSEDLY STOP WETTIN MYSELF BUT THAT MADE IT WORSE. I HAD MANY URINE INFECTIONS N I NEED TO TAKE CARE OF THAT STILL. I TRAINED MYSELF TO GO TO THE BATHROOM WHEN I NEEDED TO N I DONT WEAR STUPID DIAPERS CUZ I DONT NEED EM! LOL I REFUSED TO USE EM WHE I WAS 14 N I DONT ANYMORE.  IM THANKFUL I CAN WALK. NOW I GO TO MIAMI DADE COLLEGE TO STUDY FORENSIC SCIENCE. ONE THING I HATE R DOCTORS. THE DOCTORS TOLD MY PARENTS THAT I WASNT GONNA BE ABLE TO WALK.......LOOK AT ME NOW...YES I CAN...MY MOM SAW A PIC OF A GIRL IN A CATALOG ON A BIKE WITH LEG BRACES..SHE WANTED ME TO DO THE SAME N I DID. I RODE A BIKE FOR THE FIRST TIME WHEN I WAS NINE. I WAS IN ESE UNTIL 2ND GRADE BECAUSE THE TEACHERS SAID THAT I WAS TOO SMART FOR THAT CLASS N THEY SWITCHED ME TO REGULAR CLASSES. I TOOK HONOR CLASSES. I DONT CONSIDER MYSELF DISABLED FOR THE WAY I WALK. IVE TOLD PPL MY SOTRY N SOME SAY I INSPIRE THEM. THAT MAKES ME HAPPY. NEVER LET NO1 TELL U , U CANT SO SOMETHING....I WONT GO TO COLLEGE?IM GONNA TAKE VOATIONAL CLASSES ONLY? HAHA U R WRONG. IM IN MY SECOND YEAR IN COLLEGE. BECOMIN A FORENSIC SCIENTIST. I HAVE A JOB. SSI STOPPED GIVING ME MONEY LAST YEAR. I WAS SO SAD BUT  I KNOW EVERYTHING HAPPENS FOR A GOOD REASON. TO GROW MORE N GET A JOB TO WORK HARD N SEE HOW I SHOULD EARN THE MONEY. I RECENTLY QUIT FROM MACYS. I WORKED THERE FOR A YEAR AND A FEW MONTHS, BUT I DECIDED TO QUIT AND FOCUS MORE ON MY EDUCATION AND THE PEOPLE AROUND ME .I WORKED HARD ENOUGH TO EARN SOME MONEY FOR MY CAR AND MORE =) I AM HAPPY. I AM IN RELATIONSHIP. HE IS A WONDERFUL GUY AND HE IS EVERYTHING A GIRL COULD EVER HAVE. WE HAVE BEEN TOGETHER FOR 7 MONTHS AND HE UNDERSTOOD ME FROM THE VERY BEGINNING. IM IN LOVE AND IT IS ALL THAT MATTERS. I HAVE THE GOOD LIFE LOL

 

just a little update : 6/30/09

 

 

On December 31, 2008 I got married to my boyfriend of a year and a few months. We got married through a judge and it was the best day of my life. I moved out of my parents house and of course it was really hard for my parents because they were concerned that he would not be able to take care of me and they were scared of me living independently with him. Well, I moved out to an apartment where I am still living in. It is about 20 minutes from my parents so really I can go visit whenever I want lol.

We both work. I work in an office and I am an administrative assistant. We are happily married!!

update 9/18/10

I now live in Colorado Springs with my husband. He joined the army and he is a combat medic. I currently go to school and I changed my major to zoo keeping technology. I LOVE animals. I own a Golden Retreiver Puppy that is 5 months old and a calico cat that is almost 2 yrs old.
I have met a few wonderful army wives. My hubby has not been deployed from the one year that hes been active duty. On December 31, its going to be our 2 yrs anniversary of being married :) No kids yet because I want to finish my degree!! ;)
If you want to see more of my life, subscribe to my page on youtube at http://www.youtube.com/johee626 or find me on twitter: joheepoetry.
thanks for the lovely feedback!

 

 

joheepoetry joheepoetry
22-25, F
11 Responses Feb 15, 2007

I absolutely love your story! Thanks for sharing!!! I also was born with a minor spina bifida called myelomeningocele and I have so many dreams for my future. Reading your story gives me hope and I can only thank you for that keep the good work and good luck with everything. God bless you😘

My daughter was just born with sb and hydrocyfilis or how ever you spell it. She had surgery her first day here and they put a shunt in two days later. Its tuff to see her in so much pain cause I cant do anything. The doctors at ucla are taking carebof her but I feel everytime she gets better something elsebis wrong. Your story gave me so much inspiration that i do believe god can heal andbshe will be fine. I sit back and wish it was me that had the priblem and not her. People like you and my daughter are the most beautiful things no matter what anyone says.

My granddaughter was born last Sunday and she is SB - we had no idea and the family is still in shock. I am trying to learn all I can to help her and her parents on this journey ahead.... your story is beautiful and gives me hope. blessings to you and your hubby.

hi im also a spina bifida patient n i hv become a doctor despite all the difficulties bt i want to be a part of ur community hw is it possible actually i am advised an amputation for chronic osteomyelitis bt i dont know what r the results of surgeries in spina bifida patients someone kindly help me

I was just surfing the net and came accross this site and had to take a look. I am a 51 year old female born withSBO and was the first human to get SBO repair surgery. Doctors were not very hopeful and relayed to my parents I would probably never walk or talk well........ Yes I can walk and my 3 children say I talk way too much lol. But don't get me weong I have had many many surgeries and had a shunt replacement and am now starting to experience a lot of different symptoms and pain. But that Easter Sunday morning I was born I knew later a higher power has kept me here, we are strong positive people and have a lot to offer the world. Hope all your hopes and dreams come true and stay well.

Hi,i have added you to my circle awhile back.I have spina bifida as well.I'm 18 yr old female and have sb myelomeningocele and am in a wheelchair for longer distances and usually am able to walk some around my house.I am in pain daily but try to keep a positive attitude! I loved your story and i hope you and your hubby have a long and happy life together and everything in life goes the way you guys want it too! :)

Fabulous!!

Love your story... You must be a very strong and determined person... Wish to be as strong as you... :)

Wow, you have overcame a lot in your life. I am sure your parents are very proud of you. I am new to this site and yours is the first story I read. Keep going and maybe I will see you on CSI Miami domeday on TV.

Thats a wonderful story

What an amazing post. Thank you for sharing.