Tuesday, February 4, 2014

Day 2 of 365 pictures of the year: a blessing and curse

These are diagrams of what Spina Bifida is and how it would look before surgery..  I know I have written about this so many times you probably get sick of hearing about it but living day to day with it is a struggle and it is my way of coping with it. To inform people of how it affects me and a little refresh of what it is.. So I couldn't do the 365 days pictures without speaking about it :) 

Spina bifida, the most common NTD, is one of the most devastating of all birth defects. It results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn's back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.

People with spina bifida need to learn mobility skills, and often with the use of crutches, braces, or wheelchairs can achieve more independence. Also, with new techniques they can become independent in managing their bowel and bladder problems. Physical disabilities like spina bifida can have profound effects on one's emotional and social development. It is important that health care professionals, teachers, and parents understand these physical capabilities and limitations. To promote personal growth, they should encourage children with spina bifida (within limits of safety and health) to be independent, to participate in activities with their non-disabled peers and to assume responsibility for their own care. 

Other facts about spina bifida are as follows: 
- the cause of SB is unknown 
-Spina bifida affect 1 in 1000 babies born each year.. 
- Each case of Spina Bifida is a unique as the individual. 
- there is no cure for Spina Bifida but there have been advancing on how to prevent it but no cure has been found yet.. 

Living with Spina Bifida is one of the hardest things in my whole life. I guess a lot has to do with growing up in a town where no one had it or had heard of it. Also growing up with two older althetic brothers was rough to as I was ashamed of my disability and still struggle to this day with why I have it. Spina bifida to me is a learning experience. It's a curse and a blessing all wrapped into one package. My certain case of Spina bifida comes with bathroom issues( I cath every three-four hours, I wear special underwear), hydrocephalus (means water on the brain), spotty feeling from the waist down. I have had many surgeries for my shunt, which is a tube like device in my body that drains fluid off my brain. With dealing with Spina bifida on a daily basis I had/have a lot of social problems. I went to normal school and with that came the looks the stares, the talks behind your back, and such. Well it cuts deep but I was taught never to let it show so I kept inside which lead to destruction of my confidence. 

Ok enough about my disability.. I won't bore u anymore! If you have any questions or comments please don't hesitate to ask me. I used to not be able to answer many or was shy to talk about it but thru the years I have learn to share my experiences :) All in all all I want and what others like me what is acceptance. To be treated like a real person.. 

Ttfn, dream girl 

1 comment:

  1. Learning about SB is not boring. It helps me so I can better help you. I love you not your disability.