What It’s Like to Be Diagnosed with a Rare Neurological Disorder
What was it like being diagnosed with a rare neurological disorder, you ask? Well, it was two years ago this past December that we moved into our new home in our new province. We had already moved from eastern Canada across the country in 2012. Here we were, packing our bags again to head further west.
I had already arrived before my husband and kids made the trek. I was living with a gracious friend as our home hadn’t sold yet, and I was scheduled to start my new job. Being separated from my family was hard at times, but the new job kept me busy.
I noticed I was getting run down a lot physically, but I had no idea what was going on. Because this was at the height of the pandemic days, my recurring sore throat required that I be tested for COVID-19 frequently. Despite continually testing negative, I developed a sore throat that eventually failed to subside. Then I developed intense head pressure feelings, and my ears felt like they were ready to explode. Finally, a headache came that was unlike any headache or migraine I had ever experienced, and it wouldn’t leave. Numerous trips to the ER and an ENT visit finally resulted in a diagnosis. I had developed a rare neurological disorder. IIH, which stands for idiopathic intracranial hypertension. I had extra spinal fluid on my brain that was pushing on my eyes and crushed my pituitary gland.
I went from feeling run-down to incapacitated. No migraine cocktail would touch this pain, and my eyesight was starting to be affected. My vision was blurry, I was dizzy and nauseous, and I would soon discover that if this wasn’t addressed, the loss of vision could be the result. I saw a neurologist in the hospital who put me on acetazolamide. This pulls the fluid off the brain, but the side effects were terrible. I lost 40lbs quickly as I couldn’t eat and would throw up often. My hair started falling out, and I was so weak with the pain and the medications. The medications didn’t relieve the head pain, but they were saving my vision, so I kept going with the treatment. I spent close to a year agonizing over head pain while sleeping most of the day.
Thankfully, my kids were older at this time and becoming more self-sufficient every day. There were a lot of meals ordered and a lot of cereal for dinner consumed. The intensity of that time was merely focused on surviving. I did feel at times that I would maybe not make it. I experienced out-of-body symptoms when the pain levels got so high and I had no relief. My saving grace was the ability to sleep, even though lying down increased the pressure feelings and made waking up that much more painful.
As I type this, I almost feel a lump in my throat as I reflect on that time. It was scary, full of uncertainty and beyond exhausting. Despite all that I experienced at that time, the one thing that didn’t waver for me was my ability to trust God and not blame Him for the circumstances I found myself in. Either we believe God loves us and that our life on earth will not be without pain, or we wrestle with God and feel like life is unfair. Please hear me out. I will never shame someone who is wrestling with the goodness of God. When times are dark or we’re facing pain, I believe God can handle our anger and frustration, our doubt and disappointment. I have had my fair share since this period and before. For whatever reason, the grace to walk through that period with blind trust was there, and for that I am grateful.
