well my name is Racheal and im 23yo

i was born with spina bifida myelomeningocele and hydrocephalus  i also have lymphedema because of all of the surgeries i have had on my right side. i cath four times a day and i have to wear adult pull-ups because i dont have control of my bladder or bowels, i use a wheelchair im unable to walk now because of the swelling in my legs. i sometimes have absent seizures. and migraines, touching certain things or eating certain things really freaks me out (TACTILE DEFENSE).  so yea thats me and thats what my life is like, if you want to know more just ask.

Hazeleyez23 Hazeleyez23
7 Responses Sep 15, 2008

Thanks for sharing your story. My son has SB. He's our little gift from God. :)

hey girl just read your story , you sound so much like me . oh my name is chuck. i was born with spina bifta to in the sixtys , they said i would i woundnt live but i have. and where you talked about <br />
yiur batter and bowels , well i have the same things with mine, and like you i dont mind for people <br />
to know, you grow a thick hide when you grow up differnt from others, at least i did. but i like your <br />
attatude about life in just that small letter of yours. i hope to hear from you agian on this site.<br />
you keep that outlook girl, you love famaily, freainds, and life, and take care. my story is on here<br />
under the name intarsa. chuck.

Thanks for sharing! I am an Occupational Therapy Student working on a research assignment about Spina Bifida. I would like to know if you have had Occupational Therapy before? If so what activities did you do? How does this condition affect you and your family? What resources do you use and how did you find them? What challenges do you face and how do you deal with them? Thank you for any responses :)

I also have spina bifida, the incontinence, the lymphedema...and im glad i found a thread from a person with it that was stronger than i was. i wasnt able to mention it but you were and i admire it. you dont sound like me, you sound like a person that i could get along with. we should talk sometime..

I can relate to your story. to see more check out my youtube videos.

Hey, I answered your question about What do you think of me and became interested in your stories. I have major anxiety attacks and need meds to be normal in my every day. I'd like to be your friend too.

I think you are strong. I have Cerebral Palsy and would like to be your friend.