This isn’t a typical That’s Normal post. This is a plea from one human being that is suffering to the FDA that just doesn’t seem to care. This is an open letter to the FDA begging them to do their job.
My name is Laura. I am a wife, a mother, a daughter, a sister, a friend, and more importantly a human being. Since you’ve no doubt neglected to even read my file that has been sitting on someone’s desk since early May, let me tell you a little bit about myself. I have suffered from severe TMJ issues for the past 18 years. But now, the right side of my jaw is literally crumbling into broken pieces of bone. I am living with a broken jaw. I am existing in severe agonizing, soul-sucking pain. I am not living.
I can’t eat any of the foods I want to eat. I have to drink my meals these days. But not the fun “drinking my meals” that typically would involve vodka or scotch. No, I mean protein shakes, smoothies, soups without large bits of veggies in them, and lots and lots of water to try to make myself feel full. It doesn’t work. I am in severe agonizing pain. And the worst part? I can’t even cry about it because if I do, the pain gets even worse. I can’t smile at my son as much as I want to because my face is so swollen that it’s hard to lift up that one side of my face. Plus, making any facial expressions hurts like crazy. I no longer have a resting bitch face. I have a resting pain face.
I need a new TMJ on the right side of my face. I need a surgery called a Total Joint Replacement. I did all the things I needed to do. I got the 3D CT scan so that the company that custom makes these prosthetic implants can make mine to perfectly fit my face. I went to a world-renowned surgeon that specializes in these surgeries. I even did the blood test to make sure I wasn’t allergic to the nickel they use in the prosthesis. That’s where the hiccup happened.
Turns out I am wickedly allergic to nickel. That’s where you come in, FDA. My doctors filed, on my behalf, a “compassionate use” case so that my fancy new jaw will be made out of titanium instead of the nickel. They sent you all the paperwork. They gave you all the info you would need to quickly make the right choice so that I could get my surgery.
This was in MAY.
It’s almost September and you haven’t even LOOKED at my file. Is it sitting on someone’s desk somewhere? Collecting dust and silently getting buried under other miscellaneous papers?
FDA, you have the ability to easily OK my case. You just have to sign the paperwork. But you haven’t. Rumor has it that (allegedly) the person in charge of approving these compassionate use cases retired and you all just haven’t hired a new person to take over that job. I don’t know if that’s the truth, but it sounds about right for the government.
The American people help to pay your salaries. So, as one of your millions of bosses, let me just say this. DO YOUR DAMN JOB. Sign my paperwork and let me get this surgery that will literally change my life.
I want to be able to smile again. I want to laugh with my family. I want to continue building my writing career. I want to be able to leave my house more than once every two weeks. I want to run around my backyard with my son. I want to able to go out to a restaurant and eat like a normal person. I want to live.
That photo is the picture of a mom who slowly rocked her son to sleep and then laid there for another 30 minutes just reveling in the weight of him sleeping on me. The best feeling to a mother. Your heart rate lowers, you feel at peace. That part of your heart that runs around all day long throwing fits and making a giant mess is finally connected to you again and the deep soothing breaths you take are the most peaceful part of your life. Being a mother means that a large part of your heart is running around outside of your body and when you have these peaceful moments, everything feels right in the world.
Except right after I took this picture, I had to get up, put him in his crib and go take some pain medicine. My jaw ruined this moment for me. You, FDA, you ruined this moment. That little boy DESERVES a mother who can take him to the read-a-longs at our local library. He deserves a mother who takes him to playdates and to the park. He deserves the world. But right now, he has me. A broken woman barely keeping her shit together.
So, FDA, I need YOU to get your shit together, do your job, and approve my compassionate use case for my titanium jaw.
Editors Note: Dear TN readers – if you know someone at the Food and Drug Administration, or you know someone who KNOWS someone at the FDA, or perhaps maybe even the news press who should hear this story, please reach out to us via email or social media. Let’s get Laura’s case approved NOW!