Friday, January 13, 2017

Answers Please!

I remember sitting in the backseat of my Mom's car coming home from Edmonton after an appointment with my neurosurgeon when I was 17 years old. I was sobbing. I was exhausted. And I was done with being told that doctors didn't know what was wrong with me.

I was in so much pain, and doctors were stuck. They didn't know what to do with me. At this point in time, I had been having headaches everyday for 3 years and the reason for these headaches was STILL unknown. I had undergone countless MRI's, x-ray's, CT scans, blood draws, medication trials and had tried things like allergy tests, IV infusions, Botox injections, had a spinal tap and tried almost every alternative therapy out there. Nothing worked, and nothing concerning ever showed up on my test results. Medically speaking, aside from my Neurofibromatosis and several other medical conditions, the tests said that I was healthy. I was fine. There. Was. Nothing. Wrong. 

This might sound odd, but bear with me as I explain what I am about to say to you. I was at the point then (and am still there now), where I almost hope something comes up as "not normal" on my tests. Sometimes, I hope they find a spot on one of my MRI's (other than the tumour that is already there), or find an abnormality in my neurological assessment, or find something out of whack in my blood work. I want something to be wrong with me. I want something to be wrong, because I want them to be able to fix it. If they can identify what's wrong, they can create a treatment plan. If they create a treatment plan, they can fix my issues. When they fix my issues, I don't have to deal with chronic pain everyday... I would know what it's like to be normal.

Not knowing what's wrong makes it almost impossible to create a treatment plan. Imagine being blindfolded, spun around 20 times and then be expected to throw a dart right in the middle of a dart board. Sounds pretty tricky right? Well that's what it's like for my doctors trying to come up with a treatment plan for me. They don't know what's wrong, so it's literally like shooting in the dark. 

There is a certain number of times that you can hear "I don't know what's wrong" before you break down. That car ride home when I was 17, was about the last time I thought I could ever hear those words. I was so devastated. I didn't know how to live a normal life anymore. I was angry that doctors kept making me promises to fix my headaches and then fell through every, single, time. I was 17. I spent a large part of my time going back and forth between Edmonton for medical appointments. I felt like I was being brushed off by my doctors, because nobody knew what to with me anymore. Standard, and alternative medicine, was failing me. 

Although I still have no answers today, I have come to peace with what has happened in my past. I still wish every now and then that something would pop up, or that there would be a test that they didn't think of doing then that would give us an explanation for my chronic headaches. I read medical journals in my free time, hoping something catches my eye. But for right now there aren't any answers, and I'll be dammed if I live another second feeling sorry for myself for the stuff that I have been through. The tests, the procedures and the appointments have all shaped me into who I am. Imperfections and all. I don't have any control over what is happening to me in terms of my medical condition, so I'm going to embrace life and love every, single, minute of it. 

- Court

7 comments:

  1. It sounds like you've been able to accept what you have and go with it even if it's a huge challenge. You've got rid of some of the baggage,

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    1. Thanks so much! Looking back I can't believe how much baggage I actually carried around!

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  2. what doesn't kill us makes us stronger

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  3. Hi, my brother has nf and he was diagnosed probably 30 years ago but it sort of got push under the rug by the doctors in the rurals of alberta (don't think they knew to much about it). We didn't even know there was help out there until we had seen a new broadcast last year. If you could provide any information for resources (links, clinics that specialize in this) would be most helpful. Thank you for any assistance granted.

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    1. I am part of a not for profit group that supports people living in Alberta with neurofibomatosis. Our website is www.abtf.ca

      Right now there is no clinic in Alberta, but I believe there is one in Toronto and there is one being developed in BC. I've always struggled finding knowledgeable health care professionals in Alberta... best of luck!!!

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  4. I am sorry you are dealing with the headaches, but I am glad you have decided to enjoy your life. The fact that you want to raise your spirits during this journey shows that you are a brave, strong person. Your attitude makes a difference on this journey, but I do hope you are given answers about your condition soon.

    Kacey @ Glendale MRI

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