I have benign Idiopathic Intracranial Hypertension and the internet and most doctors will tell you that the diagnoses means that you just have headaches. I am here to tell you that, that is wrong. Headaches maybe a symptom but it is so much more than that. My ears swoosh all the time, at night it is so loud that I cant even sleep. The pressure in my head is so high that when im upright i’m dizzy and off balance. The pain in my neck and back is someday’s unbearable and lets not forget that its winter and I still have not been able to go outside without sunglasses. We can talk about the symptoms all day but what people don’t understand is after 4 medications every morning and night and 6 surgeries you have a little more than just headaches. It is so annoying when even your doctors belittle your condition. If our doctors do not understand, how can we expect others to understand. Stereotypes are awful in any situation but even worse when your the victim of the stereotype. We deal with pain everyday, all day long and all we really need or want is for someone, anyone to just understand. The nicest thing someone could ever do is ask questions, hell even google my condition and see what I really go through.
Having a chronic condition sucks. You go back and forth to the doctors, You have to take test after test after test. I’ve been dealing with a nonstop high pressure headache since the beginning of September. I’ve had blood test,EEG’s,MRI’s, CT Scans and the worst of it spinal taps. Even with all of that my wonderful team of doctors can not find out what is wrong with me or my two shunts. I’ve been through so much and I am so tired that I can not wait to hear the doctor say that they found something wrong and they can fix it. I’ve had seven surgeries in two years, three of which were brain surgeries and I am in so much pain that id volunteer to have another one if it would fix the problem. You always know with a chronic illness that it’ll never truly be over but you would do anything in the world to get this bought of pain over, these issues you are experience today over. Even if it means a long hospital stay, a surgery, more medication, anything. But when you feel that way and you express these feelings, this urgency to your doctors they think your crazy, they might even send you to a shrink. They think you must just want attention because who in their right mind would want another surgery just to get rid of pain. But that is what they don’t understand, they don’t understand the pain that we feel so enormously everyday all day long.
My name is Essence Unique Cheatom. You can call me Unique. I am a 22 year old who suffers from 2 debilitating conditions, Pseudo tumor Cerebri and Epilepsy. But that’s not all I am. Before I became ill I was an active 19 year old who worked 2 jobs and loved going to college. I was preparing for my dreams living life with the man of my dreams. And then the wind got knocked out of my sails. At a normal eye doctors appointment I found out I had fluid and pressure build up on my brain and it was making me slowly go blind.
At that point in my life I knew that I had epilepsy but I only had seizures every few months but this diagnosis drastically changed my life and quickly. After just a few weeks I was legally blind and needing my first brain surgery.
After multiple specialist, medications,seizures and six surgeries later i’m left with a life I don’t so easily recognize so I decided to take it back. Because of my illnesses I can not work or go to school so I have started trying things I would have never tried if I was well. I found a love for gardening, making wigs and I fostered the idea of starting a foundation for people like me who endure illnesses that affect the brain. I also recovered a love that had drifted away WRITING.
Since elementary school I excelled at writing and in English but just going through life I didn’t keep at it. Being at home all day I realized I can help maybe even encourage someone else. That’s where the idea for this blog came. I hope that my stories, my words can help someone who needs it. I want this to be a safe place for people to discuss their issues, ask questions and laugh because sometimes we cry so hard all we really want is to laugh!
I want everyone to know I am not just a writer trying to make someone laugh I am someone who lives, suffers and endures this everyday. Also I am a volunteer Patient advocate. I have taken classes on ways to support you in anyway you need and to answer any questions you may have.
I hope you enjoy this blog and I thank you for reading, laughing and enduring with me.