I have always been a goal oriented person. Even as a kid, I had goals. My very first church league basketball game, my goal was to slam dunk on the six foot goal. It seemed probable: I was already 5′ and I had seen Michael Jordan do it, so how hard could it be? I mean I was called Tigger in class because of how well I Jumped Rope For Heart! I didn’t slam dunk in the church gymnasium and I was crushed. I cried into my Capri Sun all the way home that I didn’t reach my goal.
As an adult, I have goals of all sizes and at times they feel like I am trying to slam dunk but I keep pressing on. Keep my head down and get work done.
For almost five months, I was walking around in a fog and joy was gone from my life. Everything was gray and the ringing in my ears made music that was once sweet, sour. My brain was clouded with pain and frustration. The poison cloud that filled every corner of my head, put my goals farther and farther away. The pain took away my drive and even took away my love of wings. I would eat them and it just tasted like chicken.
It’s a really difficult thing to explain how you have a headache but you know it’s something else. I did everything I could: countless tests, vials upon vials of blood were taken, physical therapy done, and beginning “therapy” therapy. I kept my goals small, hoping that each test would give me an answer. But I wasn’t making progress, I was just crossing out things to do on a list. I stopped making goals for my health. I just didn’t care anymore, I was fed up with misdiagnosis and fed up with everything else in my life. The hardest part was getting on stage and feeling like I shouldn’t have been up there.
February 21! The BIG Day! I was optimistic again. I got a lumbar puncture (also known as a spinal tap). I knew this was the end all, be all of tests to diagnose whats happening. I was told, that if I have Idiopathic intracranial hypertension (Learn More About It Here), the lumbar puncture could give me immediate relief!
I do have to say, it’s really surreal laying on the X-Ray table and watching the screen as they put the tap in. Pretty much I was a maple tree they were extracting syrup from.
The doctor used a tool to measure the opening pressure of the tap and I was at a 31. Typical opening pressure is between 5 and 20. It was instant gratification knowing that there was a cause! When I was left alone after the procedure before the nurse came in to roll me to recovery, I just cried. The tears were from relief and hope.
The following days I was relegated to laying down because of all of the cerebral spinal fluid (CSF) they took out. I ended up in the ER days later due to the low pressure in my head and possible leak of CSF from the puncture. Here I put my hope in this lumbar puncture to alleviate my pain but it has taken my pain to a whole new threshold. The ER doctors were dismissive and made me so furious by saying, “I’m sorry you have a headache.” Really? I am getting fired up again just typing it. I felt hopeless.
Fortunately, after being in severe pain for almost a week and everything gray, my neurologist recommends a blood patch. A blood patch is when they take your blood and inject it into the opening that was made by the lumbar puncture to seal it. I tried to get my spirits up, I tried to believe my doctor that I will feel better as soon as the procedure is over. At this point, I would do anything to feel better. I had no goals.
I felt better for a few hours and got excited then the following 48 hours were a miserable let down. It was like a really mean joke a popular kid would play on a nerd in the locker room. It was brutal. I set a goal for myself; that I wanted to be well enough to take my man to Monster Jam, which I had gotten him tickets for our anniversary. Slowly but surely, I felt the color coming back into my world and I got the call that I indeed have Idiopathic intracranial hypertension a.k.a. Pseudotumor Cerebri. Feeling excited about life and reaching the goal of not only going to see monster trucks do back flips but being an active participant in my life once again. The fog dissipated.
I have a lot right now that is up in the air and the uncertainty is pretty scary but I am so grateful to an amazing support system. I share all of this not wing related stuff because my journey to eat ALL the wings can’t happen when I’m not able to be myself: physically or emotionally.
My new goal is to eat more wings with people I care about and do what I love.