Out of Focus

Well, it has been a weird month and a half. At 33 years old, I lost most of my sight in my right eye. Multiple MRIs, many vials of blood, and handfuls of steroids later I am starting to get some answers but there is a long road ahead.

The first weekend of April, my eyes started to hurt. I thought I just hadn’t slept well because I regularly stay awake late to glue, but one eye just got progressively more painful. After about a week of this, I noticed that the center of my vision in my right eye started to get fuzzy. I immediately called nearby eye doctors to find someone who could get me in on a Friday afternoon. She looked at it and ran a couple of tests, and told me that it likely just hurt because the vision in that eye had gotten worse than the left eye, and to come back in a week to run tests again and get new glasses. She said it was likely I hadn’t noticed my worsening vision until recently because of the eye strain pain.

I should have advocated for myself better at that point. I should have said “I stare at detailed string pictures consistently, I would have noticed my vision getting worse before today”. But instead I nodded and smiled and said that it made sense.

The next day I made my husband buy me an eye patch because my eye was so sensitive to light and hurt to move. My eyesight kept getting worse. On Monday, George convinced me to go back to the eye doctor and someone else was able to see me. She ran a couple more tests and told me that she was referring me to a neuro-opthamologist (who knew that was a thing) at the University of Minnesota as soon as possible. Oh, and this may mean I have MS.

After more fancy eye tests and a MRI, it was confirmed I have optic neuritis which means that my optic nerve is inflamed. My full vision was fuzzy at this point, and it also affected being able to see some colors. I was prescribed an obscene amount of steroids to take over three days and they did help to start me on the path towards healing.

However, that MRI showed some brain lesions. That got me referred to another doctor, this time it was a neurologist specializing in MS. I had another MRI and a lot of blood tests. This is still an outstanding question mark and will be something that will be a part of my life for a long time. So far no MS diagnosis, but statistics say that it is a matter of when, not if.

I am very grateful that my eye pain and vision has gotten better. I am also incredibly thankful to the many doctors I have seen who have efficiently and effectively moved me through the process to get me to the right people to help find answers. The improvement to my vision has been very gradual, but at my follow-up visit today eye tests confirmed that I have come a long way. I still have eye pain and blurry vision, but at this point I can at least function mostly normally. It could still be weeks or months until my eye is healed as much as it will heal. Typically, people will recover 95% – 98% of their vision.

I am trying very hard to be patient through the pain and uncertainty, but I have so many lingering questions that I just won’t know the answer to for months or years. Will this happen again? If so, when? How much of my vision will I recover? How will my vision issues affect my art? If I will have MS, what other symptoms are next? What will that mean for my life? For my husband’s life? Are my priorities where I want them to be?

I am sharing this story because this experience has significantly shifted my approach to my art, I’m just still processing exactly how. I have taken a break from creating, but I am ready to get back into it and tackle summer events. I appreciate everyone’s support of me and my art through the years. I especially appreciate my husband and family for their help through this whole ordeal.

Beautiful things are coming!

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