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I want to tell you that I am 16. I will be 17 in a month, like that is relevant. I guess my age is relevant in the sense that I am a teenager and I am dealing with a 60-year-old's problems.
I guess we can start this with the day I was born. I was born with vaters. It's not a common thing, I've never seen somebody else with it. It is an acronym for vertebrae, anus, trachea, esophagus, radius and spinal. It also had the added on cardiac. I have everything but cardiac. I was also born with scoliosis, torticollis, and facial palsy.
The other thing with vaters is that is attacks the whole right side of my body. I do not have a right ear and I have a little over half of a right arm. My ear kind of looks like a seashell, one of those generic ones, you know? My arm is a whole other thing. There are scars and no thumb and it's curved due to the lack of my radius.
As I grew up I had many different doctors and went to many different hospitals. I don't remember these, I was very little. I had a brace on my arm that was metal and huge and went into my arm. Despite all these things, mom claimed I was a very happy child.
The thing is, I am on the low side of vaters. I don't deserve to complain. Some kids with this can't walk or talk or function on their own. And that is okay, nobody blames them. But it is different with me. I blame myself for gradually making my disability a main part of my day, which we will get to.
As I started to grow up, I had less problems and more problems all at the same time. I no longer needed surgeries except for the annual t-tube surgery that was very minor. Of course, now I have given up and am living life three-fourths of the way deaf. I was able to finally talk, walk and crawl, which I was late at, and I could now almost function like a toddler. Except that every now and then I would choke on almost anything.
Once I got to middle school signs of my disability started to show up again and also a few extra things. In eighth grade I was sitting in class and I had a huge pain in my side. It turned out that I had kidney stones. I had a seven millimeter one and an eight millimeter one. I was in the hospital for Halloween. I missed a lot of school because of those kidney stones. It would turn out that I would have them twice more to date. They alternated sides each time.
Now, I am a junior and I was in the emergency room last week. My spine is twisting inside of my body causing my rib cartilage to inflame. They also said my white blood count is up and it caused an infection. It hurts to walk, talk, breathe, and move. It honestly hurts to do anything. No amount of pain meds have helped no matter the strength and all I do is lie around and sleep. I have lost my appetite. I drink a lot of water and juice. Or rather that is all I am allowed to drink. They had to pull me out of school because I couldn't hardly function.
I tried to go to the grocery store with my mom a couple days after I went to the emergency room. It felt like we were walking for days or even years. Soon, my legs went numb and I couldn't make them move and I fell. That was the last time I have been in a public place.
To this date we still have not had any luck in getting answers to help me function like a normal human being. Every doctor that we go to has said a different thing, or rather the same thing, I can't help you. What you are describing isn't in my expertise. The last doctor I went to wouldn't even let me get a word in and was explaining my scoliosis to me like I have never seen it before.
I am now 16 years old, and because I cannot function like a normal teenager, I give up. I have let my disability define me, something I fought against my whole life. I just want this battle to end. I want to smile and have it be real. I want to be able to walk for more than ten minutes. I want my mom to not have to drive me to doctor after doctor and emergency room after emergency room. I want relief and I will do whatever it takes to get it.