The thing about a rare disease, at least for me, is everything that seems simple changes and easily turns complicated.
Recently I had a simple routine eye doctor appointment for my oldest daughter and me. Everything started pretty standardly. The doctor saw my daughter first, and the appointment seemed to take a little longer than I thought. I even teased my daughter that the doctor needed more time with her high prescription, but nothing big happened other than her prescription changing, and she desired contact, so we chatted about that.
My Turn
As it became my turn, I told my daughter this would be quick because I don’t really need glasses, ha ha ha, and this is just a quick check. I can read every line on the chart, and I only wear glasses for the computer for glare and fatigue; it is a very low reading prescription.
The doctor reached that point in the exam where she magnifies the light to open your eyes. This is done to see the optic nerve. Suddenly I could tell something had changed. My simple, quick appointment became no more and turned to something more complicated. She spent the next 10 to 15 minutes looking in my eyes with this magnified light and comparing it to my previous images on the computer. Back and forth, back and forth she went. Obviously, she saw something she didn’t like. She told us she needed to step out to view the image on her computer that worked better in her office. I knew then my simple appointment was no more. I looked over to my daughter with gloom and said
“She is going to refer me out.” I just knew it was coming.
Emily
Did we miss something
As we sat waiting for her to return to explain things, I thought about all the MRIs and appointments I had in the last few months. I thought about the symptoms I was supposed to pay attention to, and nothing came to mind. Did someone mention eye symptoms before? Was this something more complicated to do with my rare disease? With everything I had learned, never once do I remember it being mentioned.
And this brings me to my point! When you get diagnosed with a rare disease, you immediately think every little thing could be connected! What was going on with my eyes that my MRI didn’t show, but my optometrist saw?
The Doctor Returns
The doctor returned, and she explained to me she saw slight shadows around my optic nerve. She mentioned that it was probably something rare called Idiopathic Intracranial Hypertension, and I needed to see a neurologist. She said the usual course of treatment for something like this that shows no symptoms, which other than the shadows, I had none, was to lose weight.
Are you freaking kidding me? Hello God, I got it at the last appointment. My health is a priority, and having the optometrist point this out felt like another big kick in the gut.
“Hello God, I got it”
Emily
The doctor said she would schedule the appointment for me and said it needed to be soon. I felt the urgency, but I already feel I am on the right track if it is just about losing weight. She then mentioned they might need to do an MRI. Insert anxiety here or what I’ve heard called Scanxiety. I explained I had just done 4 in April, and she said they might be enough. They might didn’t make me feel better. My last MRIs were not fun; I just hope they were enough.
At Home
After arriving home, I paused for a moment and then went to tell my husband what happened. Bring on the angry tears here! I tell him what the doctor said. I explain that I know I am working on my weight and getting healthy to be better, but I am frustrated because I don’t want one more appointment, and I don’t want to consider that I will need another MRI. So now I wait! And pray that the appointment comes up with nothing and doesn’t require more MRIs.
I sit here writing this again, thinking, how did my simple eye appointment become so complicated? Is all this connected? Does one rare disease have nothing to do with another rather disease? Can my rare disease be less complicated again?