My First Post

After many years of going back and forth on whether to create a blog, I decided it was time. I am currently recovering from tethered spinal cord surgery and I have decided that I would use this blog as an outlet for my feeling, but more importantly, to educate people about S.B.


I have to self-catherize myself, which I have been doing since I was 4 years old. If I didn't learn how to do it, I would not have been allowed to attend regular public school. S.B. comes into your life bearing gifts that you can't return. The issue with S.B is that there is no such thing as a Spina Bifida doctor, as SB effects different parts of the body in so many ways. I have a primary doctor, a urologist, urological surgeon, neurologist, neurosurgeon, gastroenterologist, gastrosurgeon, cardiologist, physiatrist, and a psychiatrist and counselor to deal with all of it! I also go to counseling to learn how to deal and cope with people's reactions. When people look at me, they don't see a sick woman; they see someone using a handicap bathroom stall while their elderly mother is in a wheel chair waiting for that stall and I receive dirty looks for it.

 The worst was when I was in school and the teachers would refuse to allow me to go to the restroom. One time in college, the professor embarrassed me in front of the whole class when I got up to use the restroom. She said "if you can't sit through a class that is only an hour and half without having to use the restroom, then you need to see a doctor because there is something seriously wrong with you." The next class the professor made me switch seats with a guy sitting by the door in front of the whole class after I gave her my doctor's note. She announced "since you have issues and have to pee every 5 minutes, switch seats with Robert so you are by the door and don't interrupt my class THAT much." I was mortified. The professor was not asked to come back the following year.

                                                          My Medical History

In 1986, I was born with a "fatty" tumor on my spine. The tumor was removed, but it was too late. The damage to my spinal cord was already done. After many failed attempted of closing the hole in my spine, I ultimately had to have a shunt placed in my head to stop the leakage of spinal fluid. My parents were told I wouldn't be able to walk and would most likely suffer from mental retardation. Well those doctors were proved to be wrong as I WALKED at 4 school graduations.

In 1990, I was suffering from reoccurring kidney and bladder infections. I had to have my ureters, tubes that connect your bladder to your kidneys, crossed to prevent reflux and keep the infections in my bladder instead of having it spread to my kidneys. Unfortunately, this surgery is my first memory as a child. Not only because of the pain associated with the surgery, but the hospital had a regular Nintendo Game System and I would forward to my turn to play despite having IVs in both of my hands! I spent 40 days in the hospital at the age of 4.

In 1997, I had to have my shunt fixed due to the tubing tethering in my neck. That surgery was successful and I continued to live an almost normal life. I started working when I was 14. I waited table for 10 years! Yes, I waited tables when I was supposed to be the girl that wouldn't be able to walk! I played sports. I was awful, but I still played.I graduated high school, community college, and university. I have Bachelor's Degree in Law and Justice Studies and I work full time as a paralegal, which I love.

I was doing really well, until 2013 happened. I had a small procedure done and what was supposed to take 30 minutes outpatient, sent me to the hospital for 18 days and rehab for 18 days. I was paralyzed from the waist down and had to learn to walk again. At that time, I found out my spinal cord was tethered. Despite trying all the medications, nothing could stop the pain I was experiencing. So I ended up having surgery get rid of all the scar tissue from my surgery when I was an infant.

Now, I am on the road to recovery and will have plenty of time to blog! At least it will pass the time!