Five years ago (2012), just a few months after my daughter was born, my health took an unexpected turn for the worse.
After numerous visits to doctors and specialists, and more tests and scans than I can count, I was diagnosed (by my neurologist) with a rare condition called Benign Intracranial hypertension (also known as pseudotumor cerebri or idiopathic intracranial hypertension). Benign intracranial hypertension is a condition in which your body (for unknown reasons) produces too much spinal fluid (the protective fluid that surrounds your brain and spinal chord) and thus puts an extreme amount of pressure on your brain and optic nerves. Symptoms are: intense and unrelenting headaches, visual disturbances (such as "floaters" and light sensitivity) ringing of the ears, and dizziness in the eyes. At that time, I was given the ONLY medication known to help reduce spinal fluid production. Unfortunately, I had a severe allergic reaction (named Steven's Johnsons Syndrome) to the medication, and was unable to take it any longer. At that point, I had a lumbar puncture so they could test my pressures, remove fluid and at least temporarily relieve some symptoms. Eventually symptoms subsided and I was under the assumption that I was done with that difficult time of life.
Fast forward to August 2017. FIVE YEARS LATER. I started to notice blurred vision more and more at work. I often had debilitating headaches. The days WITH symptoms were becoming more frequent than the days without. This felt all too familiar. The morning of August 25th I was completely unable to get out of bed. The pain was excruciating and I could barely do anything. I managed to get up and drive myself to the hospital. Many tests were conducted, and much information about my rare disease was given to the doctors who admittedly didn't know much of how to help. I missed work for a week, and was confined to bed (after another lumbar puncture) to allow the puncture to heal. I was also instructed to follow up with my neurologist immediately.
As a newly single mom, living on my own, a week off work was financially devastating. Luckily, I was able to receive some help from an amazing program my work provides to employees who are going through emergency situations. But the time off still took a toll on an already delicate financial situation.
On October 25th, I was finally able to see my neurologist. Being that it took them nearly two months to get me in from the time of hospitalization, I half expected this appointment to be me learning how to be proactive so this wouldn't happen again. Or perhaps, me asking questions about how we would better deal with this the next time it happened. What i never expected, was the news I got.
My neurologist gently but firmly told me, "erin, I don't think you're taking this serious enough. People die from this. People go blind from this. It happens all the time. One day you wake up and can't see anymore from all the pressure on your optic nerve, and once your vision is gone, it won't come back."
I remember taking a deep breath, and then feeling my insides drop and the room start spinning. You're never really prepared for bad news. And when you hear certain words like "death" or "blindness", your mind hones in on those words and the other words after become sounds like a muted trumpet (much like the teacher talking on Charlie Brown. Wah wah wah). Your mind then becomes irrational and jumps to worse case scenario. Am I going to die? Should I have taken this more serious? How would I continue as a single mother without my eyesight? Is my daughter going to have to grow up without a mother?
I snapped out of it, really focusing on the words my neurologist was saying, because I needed to hear them. "Erin, there's three 'treatments' for Benign intracranial hypertension. 1. The medication you're very allergic to. 2. Lumbar punctures which are basically not a solution because your spinal fluid replaces itself constantly, and 3...". He paused and also took a deep breath while scrolling through pages of my medical history. "Brain surgery." He continued. "It's called VP shunt, and I believe it's the only option we have left. This is a serious operation and I need you to take this serious." He asked me to stay seated and briskly floated out of the office.
A few minutes later, my kind nurse came in with a stack of papers and a homework list. I was to schedule a surgical consultation with a neurosurgeon, have a 3 hr painful assessment done of my eyes with an ophthalmologist, make a follow up appointment with my neurologist and immediately have a battery of blood tests done at the hospital across the street. I snatched up my paperwork in a fury, and waltzed out of the office just in time to completely lose it.
I sat in my car in the parking lot sobbing for probably 20 minutes before coming back to reality. The planner in me immediately kicked in. I called my mom and let her know I needed to talk ASAP. Then I drove my tear soaked self to the 'hospital across the street'. Just as I had calmed down, for a minute even, I looked up and realized where I was. The hospital where sophia resided in for the first two weeks of her life. The tears came rushing back and at this point I could barely will myself into the hospital.
Got my blood work done and headed back towards work. My brain raced with thoughts. The fears, the unknown, the 'what-ifs'. It all raced through my mind like ball smashing around in a pin-ball machine.
Then it hit me. None of this is in my control. It never will be, and it never was. Whatever is going to happen, is going to happen. Of that, I am sure. A wise friend told me, "I pray for the STRENGTH to get through the tough stuff. Not for it to go away or get easier, but for the strength to get through it.". That really resonated with me. I have been through so much, and have been provided with much strength to overcome those challenges. I am scared, but I am ready to get this over with and continue on fighting in this beautifully messy life.
I will be finding out more information on Nov. 8th when I meet with my neurosurgeon, and will update more then. Once I have had the surgery, updates will come from my mom, step dad and brother Jason.
I appreciate the prayers, love and support while we go through this tough time. I love you all! -Erin