MYopia, My Journey: Part 3 Advocate for Yourself

Advocate for Yourself by Andrea Junge

Retina specialists are obviously very intelligent. Very intelligent and very busy. Every time I go in, the waiting room is FILLED with people. Personally, I’ve had experience with two retina specialists, and I think it’s important to tell you about both.

Both are very intelligent men doing a very important job. Aside from doctors helping cure terminal illnesses, what could be more important than helping people preserve their vision? Both specialists knew, medically, what to say to me. Both gave a diagnosis, listed reasons to come back (flashing lights, curtain coming in from any side of the eye, black pepper spots…), provided suggestions for supplement, and delivered the news of no cure.

The difference between the two specialists is empathy. I’m admittedly very emotional at the specialist office. How could I not be? All of the doctors rush in to look at my eyes because I’m so young. They mistakenly think I’m the patient’s daughter (my mom always accompanies me to these visits), and when I look around, I think why am I here? I’m too young for this.

The first specialist didn’t have great bedside manner, and I was okay with that until I went in to see him one time because of a noticeable increase of flashing lights: taking off work, and paying yet another $50 copay…and instead of dilating me and looking into my eyes, he simply told me that my eyes were fine, that I was worrying too much (he was right about that!), and that I needed antidepressants (wrong!). New specialist coming right up!

When I went to visit my second and current specialist, I could tell he cared how I felt, and that is so comforting. He still cannot cure me, but he makes me feel calm. Long story short, he found a tear in my retina (the tear my original specialist may have found if he dilated me instead of trying to prescribe antidepressants).

Always advocate for yourself.

Every time I leave the retina specialist’s office, I leave with questions and wonder. I ask questions while I’m there like, “Is running safe for my eyes?” Both specialists told me not to stop running, exercise is healthy for your eyes, right? Well, neither specialists are runners (I asked), and they can’t possibly understand the constant pounding of the eyes with every step I took. I stopped running anyway.

Always advocate for yourself.

Both specialists suggested Preservision AREDS2, but neither told me that a certain percent of the population who takes this supplement is at risk for zinc actually HARMING their eyes. I researched this myself and good thing I did, because I’m in that certain percent (lucky me…). In fact, my awesome, empathetic specialist told me NOT to have the genetic testing done and suggested I buy Christmas gifts with saved money instead. (wrong!).

Always advocate for yourself.

Two months ago, I was a runner who took too much zinc, with a tear in my retina. Now, I’m a walker who doesn’t take zinc, with a fixed retina…because I always advocate for myself.

One other thing I learned by researching myself is that I will not ever be completely blind as I had envisioned when I was first diagnosed. Nobody wants to lose their central vision, but doesn’t that seem a whole lot better than going blackout blind? Shouldn’t one of my retinal specialists explained this to me?

Always advocate for yourself.

Contact information for ArcticDx the company that did the genetic testing

If you are on the fence about getting the genetic testing done, I can tell you that I am so glad and proud of myself that I did. Knowledge is such a powerful tool, sometimes our only tool. Just think…if I didn’t have the genetic testing done, I’d still be taking zinc and harming my eyes instead of helping them. That’s devastating.

[Lin/Linda here: click on the image to the left to go to the webpage for ArcticDX, the company that did Andrea’s genetic testing].

 

Next: MYopia, My Journey: Part 4 Jail the Joy Thief!

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