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Julie, 43

Updated: Nov 15, 2022

Julie's son at birth & now, 1 pound at birth now a toddler healthy and happy running around
Julie's son at birth & now

Social media handles:

Facebook, Quora

Where are you from?

Chicago, Illinois

Where do you live now?

Rural Country, Illinois

Tell us a little about yourself:

My name is Julie and I am a stay-at-home mother of two sons that are 9 and 3 years old. My passion is creating art and diamond painting. We are an outdoor-loving family and love to camp and travel. Summer is my favorite season and we are looking to move to a warmer climate year-round. Fingers crossed it happens sooner than later!

Your eye story?

Three years ago I was 23 weeks pregnant when I suddenly became severely ill. It started as what we thought was just ligament pains, but it continued to progressively get worse. I also had sciatic pain and literally could not walk. As the weeks passed, I just knew there was something seriously wrong. It was the morning of the 4th of July 2018. I was rushed to the ER, and before I knew it, in ICU. It took a while to find out what was wrong. Apparently, I had an existing kidney stone that I was unaware of. It’s actually very scary because you would never know you have one unless you suffer symptoms or you pass it. I did not have either. My son, in utero, kicked my kidney stone and it ended up blocking my urethra, the worse possible place! I ended up with a UTI, which turned into a kidney infection, which then entered my bloodstream, and I became septic. Scary scary times, all while pregnant and being watched for pre-eclampsia. All of this happened within ONE week. I had just been at my OB and had cleared all visits prior. I was so confused about how this had gone undetected.

At this point, at least we had figured out what the problem was. Dr.’s began to treat the infection and miraculously my son and I pull through perfectly healthy. Thank the heavens! I start feeling better, but then start having problems with my left eye. At first, I thought it was the start of Pink Eye. It really felt exactly like it. I noticed that somehow all the antibiotics I was on weren’t helping it. It just kept getting worse. I begged and begged for help. I don't know if my medical team was too focused on me being septic or what, but they did not acknowledge it for THREE days! They gave me Visine, a patch, and moved on. What!?

Finally, an Ophthalmologist came in, took one look at it, and immediately had me airlifted to a bigger, better hospital downtown. Once I get there, I immediately have emergency reattachment surgery because the infection had reached my left eye, and my retina was detaching. I had to have a nephrostomy bag because my kidney stone could not be lasered out during pregnancy. On top of all of this, the outcome of my vision from my emergency reattachment surgery was horrifying.

At this point, I’m pregnant, blind, have a pee bag hanging out of my body, and can’t walk because my sciatica is so bad. Needless to say, I left the hospital a complete mess. My whole world was crashing down on me. The only thing holding me together was the fact that my baby was safe and sound. I finally get home after weeks of this horrendous nightmare. I’m unable to be prescribed many drugs for my pain and I experience unimaginable things while conscious and alert. PTSD to this day continues frequently.

After being home for a week, I attend my weekly scheduled OB appointment. The next thing I know, I’m being rushed to an emergency c-section. My blood pressure is out of the world high and they couldn't get it down. Tatum James ends up being born at 27 weeks, 1 lb 10 oz. We spend 69 days in the NICU. He makes it through and is the happiest little joy I could have ever been given. I would give up my eyesight any day again, for him. So he's been my little troublemaker since day 1. At this point I am 38 years old, trying to deal with vision loss, and having just had a micro preemie. I felt as though I was the most lost I had ever been. I didn't get to grieve the loss of my eye because I was so focused on my son. Here I am now, three years later, and I am still suffering. Every day is a struggle. I still have no vision, however, it's gotten even worse. I have silicone oil holding my retina in place since my own was too infected and they had to remove it.

So with my current vision, I can see, what has been explained to me as, looking through a bottle of vegetable oil. I have light perception and can technically see the oil and all its effects of it, but have no real vision. It's disorientating, nauseating, exhausting, and mentally draining. In regards to getting some comfort, I have tried everything to no avail. Some days I honestly just don't want to go on. They will not remove my eye bc it's “healthy”, but it’s clearly not. It's actually a nightmare. I found a facility called The mind Eye Institute in my own state, which works with you and retraining your brain with the use of therapy and “brain glasses”. I’ve done lots of research and it looks very promising. I even had a free consultation and I'm definitely a great candidate. However, once again, my hopes were up and then were quickly crushed. They do not take any type of insurance and the cost when said and done is about $6000. So there goes my chance at a better quality of life. I have PTSD, panic disorder, depression, anxiety…you name it.

Julie and her two son's sitting on the couch smiling at the camera.
Julie and her two son's

HOWEVER! The point of sharing my story is I WILL NEVER GIVE UP! As many times a day as I want to, I will never. I have 2 sons that need me. They are my light in these literally dark times. I'm grateful my son made it through and I'm happy to be alive as well. If you were to look at me, you would never know I have no sight. One of those “you look fine” types of deals. If you only knew the torture I endure daily. Never, ever take your days for granted, or your health, or your eyes, or limbs- or all the things we take for granted on a day-to-day basis! I have been given ONE amazing thing from all this. I see life in such a different way. Everything is beautiful and life is so so so so magical. I hold on to my babies and thank the heavens every minute that I have them and that I do have vision in my right eye.

If you read this, THANK YOU! Send some positive energy out and always remember God gives the greatest battles to the strongest ones. One day at a time. Love and happiness always.

What has been the most challenging thing mentally?

All of it. Acceptance has probably been the most challenging. It's been three years and I still haven’t. The loss of an eye so late in life while at the same time having an emergency c-section at 27 weeks was at the very least traumatizing. Dealing with the constant fear I have of losing my good eye, the PTSD, the depression, the panic, and anxiety… has been the hardest thing I’ve ever had to face in my life.

What has been the most challenging thing physically?

Balance and perception. I feel exhausted allllll the time, but I stay positive for my family.

Where are you now in your recovery?

At a standstill. I still have silicone oil in my eye. The doctor won't remove it because my eye is "healthy" and don't want to risk another detachment. However, that leaves me to be tortured daily because while I don’t have any vision, I do have light perception and I can "see" the oil and the light inference, which messes with my good eye. It's an everyday battle to get through. It's nauseating and I feel as though it's affecting my brain in a negative way.

What piece of advice would you give to someone going through their eye impairment journey?

Stay as positive as you can, and take everything hour by hour. Rest. Don't push yourself too hard, and find support.

Who is your eye surgeon and ocularist?

Dr. Merrel Rush University Chicago IL

How did you find EYEHESIVE?

Facebook recommendation

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