What You Need To Know…

Well seeing as my Spina Bifida is something that’s always going to be apart of my life, might as well talk about it now. One part because I just want to get this over with so I can write about other things, and the other part is it has to happen some time. By the way, if you don’t like looking at photos with scars or deformities then I suggest  you stop reading. You have been warned.

With this post I’m just going to be talking about my Spina Bifida and how it affected my body. Some personal feelings may be written but it’s mainly going to be facts. As to how I generally feel day to day living with this birth defect, don’t worry, you’ll get plenty of that in future blog posts.

While my mother was pregnant with me, she did get that little test they do to see if a child has a birth defect. The results of that test came out negative, meaning that I “didn’t” have a birth defect. November 13th, 1992 came around and when I entered this world they all realized the test was wrong. Most kids born with Spina Bifida are born with their backs open and exposed (don’t worry, even I don’t want to see a picture of that again). But mine wasn’t, instead it was closed with a small bump at the base of my spine.

Screen Shot 2015-06-05 at 8.16.50 AM
Baby Andrea, 9 days old

This bump (which my family and I call “my bump”) indicated that I had Spina Bifida Lipomyelomeningocele, which by the way I always have to look up the spelling because it’s such a ridiculous word to spell. It basically means my spine and back tissue pushes through and forms a bump under my skin. The picture above is how my back looked before I had my first surgery. I know my back wasn’t the best looking baby back by hey, I still had a cute baby face!

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Baby Andrea, 9 days old

Anyways, my Spina Bifida meant that everything was a mystery as to what will happen to me. My type is considered a rare one because not many people are born with it. I guess that’s the exact definition of rare, good job Andrea. The main focus of my surgeries growing up was to “untether” my spine. Which meant that my back produced too many nerves and back tissue around my spine constricting my spine. So in order to free my spine up so it could grow with me the doctors had to take out nerves and back tissue. And they did that about 12 times throughout my life.

I should say, most people born with Spina Bifida are not able to walk. And if they can, there are complications. Most of the time, doctors will be able to tell the parents if their child (who has Spina Bifida) will be able to walk from the moment they’re born. For my doctors, they didn’t know what to tell my parents, but they said not to be too hopeful. I’m sure if baby Andrea was anything like how I am today, she doesn’t like to be assumed in what she can and cannot do. So sure enough toddler Andrea started walking without any complications.

Except those complications came later…remember how my doctors had to take nerves out of my back? Well one surgery those nerves where in charge of the feeling and some function in my feet. After they were taken out, I lost feeling in my feet and over time I’ve noticed that I can’t move some of my toes. But don’t worry, I can still walk just fine. My body just adapted and my  eyes play a major part in the balance I need in order to walk. It’s still gets hard though not being able to feel. I fall down more than your average clumsy person (which I’m pretty clumsy to begin with) and I have a bad habit of walking bare foot (blame being from Florida) so I cut my feet a lot and don’t know until the wound is infected. Also, “clawing” is a thing people with Spina Bifida get. It’s basically the muscles in the feet tense up.

So let’s fast forward, I’ve had 12 surgeries on my back, I was later diagnosed with Chairi Malformation (my cerebellum is a mass and was pushing against my skull causing me to black out) and I underwent brain surgery. And now I’m a somewhat healthy twenty-two year old. I still struggle with my walking, not many of my friends know but my legs will give out many times when I’m with them (I’m really good at hiding it). I’m in constant pain but it’s not too bad since it’s pain I’ve been use to my whole life. Because of my nerve damage, if my feet fall asleep (like when you sit on your foot too long and it goes numb, except for me I can’t tell because my foot always feels numb) I can’t use my foot until it “wakes up”. Literally, I can’t get it to move or anything.

Currently I don’t go to the doctor because there aren’t adult Spina Bifida clinics in Florida. The goal is to finish my degree and move to California where there are doctors that can help me understand what will happen to me and how I’m progressing. So this is basically my life right now with Spina Bifida, of me trying to function “normally” and hoping that my friends understand that “normal” things are a challenge for me. But they are challenges I’m willing to accept and that I enjoy doing, no matter how hard they are. They may not see that I’m struggling and that’s because I don’t allow them to see. I want them to look at me in a positive light even though on the inside I’m having a difficult time. Oh here’s a picture of my back currently in case you were wondering, also it’s not as pretty as when I was younger. It’s gone through a lot of battles.

Screen Shot 2015-06-05 at 9.00.45 AMScreen Shot 2015-06-05 at 9.00.54 AM

I think that’s all I can fit right now about my Spina Bifida. There’s so much I didn’t cover, but I think this is a good overview especially because this post is so long. There will be more in the future. I hope this gives you a good understanding. If you have questions, feel free to leave them. I don’t mind answering, especially since this can get confusing for those who never deal with it.

Well thanks for reading! Now that this is out of the way I can write more light hearted things!

-Andrea

 

 

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