On the morning of October 23rd, 2014, I woke up to a pile of moving boxes and a messy apartment. I was excited about having lunch with my friend Ally (From the Right Bank) and dreading finishing up packing for the move back to NC that I was preparing for that weekend.
After doing some more packing, I threw my hair into a bun, wrapped a scarf around my neck and ran out the door to meet Ally at this cute lunch place in Buckhead. I remember driving to the restaurant and thinking, "Did I put my contacts in backwards? My eyes feel weird!" (I don't know if any of my fellow contact lenses wearers do this, but I've made the mistake of putting my left contact into my right eye and vice versa several times.) I shrugged it off as nothing, and planned to switch them later.
As Ally and I were catching up through lunch though, I realized that something else was going on. I noticed that my vision was more than blurred; there were spots within my field of vision that were just.... gone. I left lunch, called my eye doctor explaining what I was experiencing and they suggested coming in right away.
And because I am crazy, I drove myself there without first thinking, "Maybe it isn't a good idea to drive yourself around Atlanta with a vision impairment..."
Nevertheless, I made it to the doctor. On the way, I noticed that my vision was generally clear, but the "pockets" that I could not see were increasing. It's really hard to explain but, I noticed that I could clearly see the car in from of me, but the license plate was completely invisible. Or I looked at where the stoplight should be, and I could see all the clouds in the sky, but the stoplight itself? It was completely "gone" even though I knew it was there.
Once there, my ophthalmologist tested my eyes with every instrument and test that he could, and found nothing wrong with the anatomy of my eyes. At this point, I became really frustrated because the doctor basically insinuated that I was making this up, imagining my symptoms or so stressed that I literally couldn't see. He suggested that if I really was experiencing what I was experiencing, that it had to be neurological and that I should seek consult from a neurologist.
So after this, I'm sitting in the lobby of the doctors office, with no explanation and unable to drive myself home after getting my eyes dilated. While waiting for it to wear off, I called to confirm dinner plans with my friend Kelli and I mentioned that although I felt fine, I didn't think I should drive later because something was going on with my eyes.
Being the great friend that she is, Kelli was concerned and tried to get to the bottom of this situation with me, rather than go grab cocktails & sushi as we planned. After playing doctor ourselves, I called my dad and he suggested that I go to the ER. I do NOT like being a patient, so I did not want to go. Kelli and my Dad convinced me that if I didn't go that night, I could wake up blind, or worse, not wake up at all.
So, we went to the hospital.
Once there, they put me through triage at the ER and gave me the simple "stacked letter" eye test. I remember not being able to see the big E at all with my left eye but the rest of the chart was clear. With my right eye, I could barely see anything at all. Frustrated and tired, I felt that undeniable pit of fear my stomach. They gave me a quick CT Scan to see if anything showed up in my brain, but nothing came up. The doctor on staff suggested that I stay overnight so that they could give me an MRI in the morning.
Since Kelli was only in town for work, and had to be there early in the morning, she left and I was there with just the clothes on my back, what I had in my purse and the cell phone charger she most graciously left me. Seriously, I don't know what I would have done that night if Kelli wasn't there!
The next morning, I was given an MRI. For those of you who have never had one, you have to lay down in this big tube that sounds like pieces of metal are banging all around your head. I'm glad that I'm not claustrophobic, because you're in there for a while! At this point, I've called my parents back in NC to let them know what's going on and my dad is in route to GA.
After a couple hours, a neurologist visits me in the room and asks me a lot of questions and does a series of "tests" to determine what to do next. She shows me my MRI and explains that there are lesions on my brain that indicate I have Multiple Sclerosis (MS). She's a bit perplexed though, because I had absolutely no bodily symptoms or family history, but the inflammation of my brain and the lesions present were aggressive.
My MRI looked something like this, with more lesions (the white spots) present and a ring of inflammation that showed white around the perimeter of my brain.
In this moment, I was in shock and I really kind of went numb. The next step was for me to get another MRI on my spine, to make sure there were no more lesions in my spinal cord. And then I had a spinal tap (lumbar puncture); where they stick this really big needle in your back to get a sample of your spinal fluid. They wanted to make sure this wasn't cancer or an infection.
Another neurologist came in and explained to me that what I was experiencing is optic neuritis. Basically, my brain was so swollen that it was squeezing the optic nerves which supply information from my eyes to my brain. In order to get the inflammation down, I had to have a huge dose of steroids, by IV. So they hooked me up to a machine, and gave me my first dose of "the juice" and I wait.
By this time, my dad has arrived from NC and several of my wonderful friends came by the hospital to check on me. I'm still completely in denial that all of this is happening and thinking about how I need to pack because I'm moving and starting my new job on Monday! It hadn't sunk in yet that this was the beginning of an uphill battle and that my vision wasn't going to come back quickly. Being pumped with steroids sucks, and has all sorts of weird side effects, which I wasn't expecting.
Thankfully, my family and the guy I was dating at the time showed up and completely handled my move over the weekend. My mom came down and helped me wrap up the last details of my move and drove me up to NC. My dad pulled some strings back in Raleigh and got me an appointment with a neurologist right away. When I arrived back in NC, I could not see out of my right eye at all and my left eye had only improved to about 50%. I didn't feel comfortable driving myself anywhere, so my mom and my sister took me anywhere I needed to go.
I started my new job one day later than my originally planned start date and they had no idea why. I told them that I needed one more day to finish up my move. Starting a new job is always a little nerve wracking, but it's even more strange when your mom has to drop you off and you cannot see out of one eye. I can only attribute me being able to pull it off to the grace of God!
After a couple of weeks, I was able to see a neuro-ophthalmologist (a brain doctor who specializes in eye conditions) who gave me the go ahead to drive again, with caution. Once I was able to drive again, I felt like I could finally get started on my new normal. With some intentional adjustments, I was able to drive, get settled in my new place and my new job.
So what now? It's been 9 months since my first attack and I have not had another. MS is a hard disease to diagnose and treat, but I am thankful that I have an awesome team of doctors who have gotten me on a treatment plan that seems to be working. The vision in my right eye has not completely returned; I can see out of it, but it is still a bit blurred. I'm able to do everything I need to do though, so I cannot complain. My doctors are pretty confident that I will not have another incident like October as long as I stay on my treatment plan. According to my doctor, sometimes it takes years for the optic nerves to fully recover from attack like mine, so I am especially grateful for how quickly I have rebounded.
What I learned from all of this: Youth and knowledge allowed me to take my health for granted. I was so focused on my worldly goals that I neglected to appreciate the blessing that it is just to wake up, roll over and to be able to SEE. The whole ordeal, and the months following, really forced me to take stock of what's truly important to me and how I was caring for it.
If you've read this entire long story, thank you! I hope that sharing my story blessed you in some way and puts a different face on Multiple Sclerosis. Before being diagnosed myself, I only knew one person personally that had been diagnosed, and her story is completely different from mine. If you're reading this and have any questions about MS, have MS yourself and/or just want to connect further, please feel free to reach out! Comment below, email me, or tweet me. I'd love to hear from you! If you want to hear more about what it's like for one woman to live with MS for 20+ years, check out this great blog by Tricia Chandler - www.lovemymslife.com.
And lastly, God is so faithful. And I can only attribute my continual healing to Him. I don't think it was a coincidence that this happened the very week that my friend Kelli was visiting Atlanta and I was planning to move back to NC, where I have the support of my family and friends. I could not have made it through without all of them and I am forever grateful!
And lastly, God is so faithful. And I can only attribute my continual healing to Him. I don't think it was a coincidence that this happened the very week that my friend Kelli was visiting Atlanta and I was planning to move back to NC, where I have the support of my family and friends. I could not have made it through without all of them and I am forever grateful!
Niki, I am so sorry to hear about your illness but know that God will take care of you. You are in my thoughts and prayers for continued healing and wellness. You have always had a bright light and it continues to shine even through all of this. Hugs and well wishes.
ReplyDeleteShelly