Blurry trip through San Francisco

My First Relapse – March 29, 2017

Optic Neuritis in California

Try to imagine waking up one day and you have a weird blurry/bright spot in your vision. It isn’t very big, but it is noticeable. What is the first thought that would run through your mind? Maybe you are tired, sick, or stressed out and so you equate that to being the problem. Maybe you woke up and your phone screen was so bright that it caused a bright spot in your vision and it will go away momentarily.

Losing my eyesight was the scariest thing that happened to me. It is never something you expect and it is hard to explain to people. Imagine trying to tell someone that you have a blind spot in your vision (they are going to think you are crazy). It is incredibly frustrating waking up one day and not being able to see clearly.

I remember the day that I started to lose my eyesight like it were yesterday. It was actually just one day before my 28th birthday. I woke up and looked at my phone and it looked a bit blurry, but I assumed I was just tired. It was the last day of our work conference and when I went downstairs I realized I needed to finish one last thing on my computer. When I opened it up, there was still that small blurry spot. It was so odd and I assumed my contacts were on inside out or there was something on them. I went about my day not thinking too much about it, but annoyed that there was something off about my vision.

Mitchell had flown down to join me for a extended trip in Monterey and San Francisco to celebrate my 28th birthday. I remember the next day waking up realizing that my eyes still felt blurry and that it might have gotten a little bit worse. I wasn’t sure how to explain it to Mitchell and we figured that it must be related to the amount of stress from the previous week (I hate flying and get anxious meeting new people) or related to the cold I was fighting. By the time we got to San Francisco, it felt like I could barely see anything. I am sure Mitchell either thought that I was losing it or making this whole thing up (how do you go from one day seeing fine to the next not being able to see anything.) And, I have always worn contacts so what is wrong with a bit of blurry vision, right? I knew something wasn’t right, but I decided there wasn’t much that a vision clinic would be able to do for me when we were headed home soon anyways.

Trip to San Francisco
Trip to San Francisco in 2017 during my first episode with optic neuritis.

Annual Eye Exam

I randomly had my annual eye exam the week we got home, so I figured I would wait and check-in with my doctor then. I remember going in and telling them that I couldn’t see anything and they just casually said, “oh we will make sure to get your prescription adjusted”. I tried to explain, but they wouldn’t listen and didn’t realize what I meant until they started asking me to read the board in front of me and when they would change the lenses and I still couldn’t see, they were baffled. They started doing tests and they couldn’t find anything, but clearly understood that I couldn’t read the letters on the board straight ahead of me. They ran a few additional tests and told me that they couldn’t find anything wrong and that it would probably clear up in a few days (nervously giggling while explaining this to me). Yes, this seriously happened. That was all they could tell me.

Be Your Own Advocate

Doctors, nurses, health care providers are amazing. They went to school specifically to take care of us and to learn more about the complex health variations that happen to our bodies. They are smart and usually caring individuals. However, sometimes it is crucial for you to be your own advocate when it comes to your health. Doctors are people and they make mistakes. I wasn’t accepting that my vision would stay blurry for who knows how long and that it would just “go away”. This didn’t seem normal or right.

Mitchell had recently gone to an eye doctor (he almost lost his vision when he got poked in the eye playing flag football. We are quite the team over here. Ha.) and he was very pleased with the technology and thorough examination and treatment he had received. Sure enough, they figured out that my optic nerve was swollen very quickly and they sent me to an opthoneurologist, but did not warn me that this was a typical first symptom of Multiple Sclerosis (MS).

My First MRI

I was scheduled for an MRI and a follow-up appointment. I went in and did the MRI, having no clue what they were looking for besides the swollen optic nerve. When I arrived at the follow-up appointment the nurse-tech asked me how long I had been diagnosed with Multiple Sclerosis. I looked puzzled and said I don’t have MS. He kept asking me about MS, going on and on. I was furious, and I think Mitchell was too. When the doctor finally came in to go over my tests, it was the first time Mitchell realized how much I really couldn’t see out of my eyes. He was absolutely shocked how bad my field of vision test was. I had lost about 80-90% of my eyesight in my left eye and about 60% in my right eye. My MRI came back clear of MS (no lesions), but the doctor explained that optic neuritis is often a first symptom of MS so I would need to be tested every year for 5 years before I was considered “all clear”. There was a small possibility that this was considered a clinically isolated syndrome and that I would never have to worry about MS or another relapse. I was put on a ton of steroids to help my eyes get better, so much so that I kept clearing the shelves of the drug stores (I would have to drive to different stores around the city to get more) and they all seemed very concerned about giving me so many steroids. Slowly, but surely, my eyes started getting better and as of today I have my complete vision back (with a tiny bit of diminished vision and color in my left eye).

Sound Advice – Don’t Wait

I remember having a conversation with my friend’s dad who is a doctor about my fear and worry over waiting. Surely, there had to be something I could “do” to make this better or to fix this. How could I sit around waiting? I am a problem solver and I am convinced there is always a way to fix something.

I was so concerned by the fact that I could end up with MS and that for 5 years I would have to sit and wait and worry. How could I go about my daily life knowing that MS is looming in my future? I would have to stress out about my MRI every year. What will happen if the next scan shows some lesions?

My friend’s dad reminded me that I can’t live in fear of what may come. What good would it do to worry and be afraid of what could happen one, two, or five years down the road? That fear would eat me alive and what good is it really going to do if I sit and worry day-in and day-out about whether I could end up with MS.

If you think about it, we all could sit and worry about what our future holds (and I have before). What if I get cancer, what if something happens to Mitchell, what if I have a heart attack. We can let our imagination run wild, but I don’t recommend it. We need to let go of the fears and worries about what is to come. Most likely, there isn’t much you can do to stop something bad from happening and you might hurt yourself more if you try. We will enjoy life more if we find a way to live in peace.

Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.

John 14:27

I was given the gift of peace for two years. That gift was the most important gift I could receive while pregnant and the first year of Luke’s life. God protected me from my impending disease for two years so that I could not be afraid of what was to come, that I wouldn’t be afraid to start a family, and that I could enjoy every exciting moment of my pregnancy and first year with Luke. I hope that even now that I know I have MS, I can keep living in peace knowing that God can give me that peace and comfort that I need. I don’t need to be afraid of this disease or what may come in my future because it is out of my control. And, turns out it is actually healthier for me and my body if I can find peace and release stress. Praying for peace now and always.