Tag: myopic maculopathy

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 [Lin/Linda: please read the Caution below], 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.

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].

Caution

Neither the AREDS nor AREDS2 supplements were tested with those with Myopic Macular Degeneration for safety and effectiveness. These are high doses of vitamins and minerals and without research with this particular type of macular degeneration, we feel that taking them is not advisable.  Since MMD affects people at younger ages than AMD, taking these supplements over a LONG period of time could do harm…we just don’t know. Andrea was right in doing her research. Regarding the effect of high doses of zinc on MMD, we don’t know if the same risks apply.  Andrea was smart to do her research on that as well.

 

Continue reading “MYopia, My Journey: Part 3 Advocate for Yourself”

The Joy Thief by Andrea Junge

Myopic Macular Degeneration is stealing my joy.

I recently stopped running, something I loved so much, because the pounding posed threat to my fragile retina.

Joy stolen.

I am blessed to have a wonderful loving and supportive husband, am raising two beautiful and healthy sons age 8 and 5, I have amazing and supportive parents, caring friends and coworkers…and am still struggling with the dark visions of my future…even though my ‘now’ is really, really great.

Joy stolen.

I’m struggling. Big time. I cry a lot. I pray a lot. I complain a lot. I research a lot. I feel sorry for myself a lot.

Joy stolen.

The only thing that makes me feel any better right now is knowledge.

Knowledge and what I choose to fuel my body with each and every day gives me a strange sense of power. I am researching and learning everything I can about eye health, nutrition and supplement. I eat spinach and arugula (gross! Seriously, it’s not good), orange bell peppers, and blueberries EVERY.SINGLE.DAY.

Joy stolen.

I am a work in progress. I’m learning that, for me, this is a grieving process. I’m grieving the loss of my vision before I’ve even lost it. I’m grieving the changes to the future I had planned for myself before these plans have had a chance to come to fruition.

Joy stolen.

Recently, my eyes started showing me just how ‘sick’ they are. A few months ago, I had to have laser surgery to repair a tear in my retina and my blind spot seems so big. I have a bazillion floaters and flashing lights and any slight change rushes me into the overcrowded specialist office that is filled with people more than twice my age. I cry every single time I’m there, but I am gratefully still able to live a pretty normal life. I can still work, drive and read. I can still see my children’s beautiful faces. Yet I’m sad because I feel like I’m losing the battle.

Joy stolen.

I have oodles of sunglasses, technology glasses for myself and my children. I know which supplements I should take and which supplements they should take. Sometimes more than myself, I worry about my children. Will they have this disease? How can I help them now? Is Evan wearing his sunglasses? Did Wyatt swallow his vitamins or hide them?

Joy stolen.

I’m having to relearn who I am and what I will and won’t allow for myself. I don’t know all of the answers to my problem, but I do know that my worrying will inevitably become regret someday if I allow it to continue to rob me of the joys in life that I love so much.

It’s a new year and my resolution is to stop this joy thief.

Continue reading “MYopia, My Journey: Part 2 The Joy Thief”

MYopia by Andrea Junge

At the mere age of 26, I was driving to work and thought, hmmm…

I was seeing what I didn’t know at the time was my very first blind spot. I was 8 weeks pregnant with my first child and assumed it was some kind of weird pregnancy symptom. It had to be, right? Unfortunately, it was the beginning of what I now know is myopic macular degeneration, probable central blindness, a different future than I had planned – much earlier than feels fair.

Myopic Macular Degeneration basically mimics AMD, only much sooner in life. It is a fairly new diagnosis with no cure.

I have always been extremely myopic. I got my first pair of coke bottle glasses at 5 and I was okay with it…until that first blind spot reared its ugly head and I learned the extent of my extreme myopia and what that really meant. Right away, I started grieving the future I had planned for myself and for my growing family. Everything I envisioned for my future turned into these scary mental images of me sitting in bed crying, in the dark, alone.

As time went on, there wasn’t any noticeable change to my eyes. For almost 8 years, I had so little change that I didn’t even think about it much anymore, and my miraculous brain had even hidden my blind spot! My family grew, life went on and then BOOM! In May of 2016, as I was reading to my students, I noticed my blind spot again and realized it was bigger. My heart sunk into my stomach. I knew this was not good.

My name is Andrea Junge, I am 34 years old, and am losing my vision. That’s not easy to admit. The last 7 months have been filled with specialist visits, surgeries, tests, research, education and a lot of worry and anxiety.

I am a very sentimental person. Every memory my family makes is documented with a picture so I can relive it all whenever I want. I am that mom who holds onto her young children for dear life because watching them grow up is amazing and hard all at the same time. I am a planner by nature, and this disease is not something I planned for. I am truly grateful for every day I wake up and can see, but I am so scared.

Losing your vision is frightening. There is so much unknown. I think about it all the time. I worry all the time.

written January 2017

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Andrea Junge is 34 and has extreme myopia. She has struggled with vision her whole life, but was recently diagnosed with myopic macular degeneration. She and her husband, Chris, are raising two young boys who love to play soccer and video games, explore nature, snuggle with the family’s two dogs: a dachshund and a pitbull, and play board games as a family. Last summer, the Junge family moved to the small town where Andrea has taught third grade for 13 years. She is lucky enough to bring her sons to school with her every day, where they are taught by her supportive coworkers and friends. Andrea enjoys nothing more than being a mom and strives every day to be a loving wife and caring teacher, while learning how to maintain a healthy lifestyle in attempt to preserve her vision. Andrea is an early riser. She wakes well before everyone else in her family to get outside and exercise, all year long. Fresh air helps Andrea clear her head and start her day in a healthy, positive way.

Continue reading “MYopia, My Journey: Part 1 MYopia”