so. damn. punny.

Bedroom eyes.

Roll your eyes.

I’ve got my eye on you.

Sleep with one eye open.

All eyes on you.

Sight for sore eyes.

Feast your eyes on this.

Stars in her eyes.

Easy on the eyes.

Keep an eye on it.

That was easy. If I thought about 1 minute longer I could double that list. A list of phrases no one “bats an eye at”… this is too easy. The look on peoples faces when they realized they’ve used one of these in front of me is kind of priceless. Most common, someone says “keep an eye out” and I say, “okay, because I’ve only got 1” and then sometimes they laugh and sometimes they get nervous. Honestly, if I didn’t laugh about it, I’d cry.

For starters, this is still new to me. It’s been about a year and a half since I went completely blind in my left eye. If I was born like this, it would probably be different… I wouldn’t know any different. But I went 36 years with full eyesight. Losing one is scary. I really hope in 5 or 10 years, I’ll have adapted as much as humanly possible.

How…. gahhhh. I hate this. I will fill you in because I WANT to and not because I heard several people saying that I went in for a “nose job” (que most dramatic eye roll ever, yes I can and do roll my eyes). I went in for a “routine” sinus surgery with my former ENT. I had a chronic sinus infection and a deviated septum, adding to the issue. So I picked a weekend that we didn’t have a baseball tournament, knowing I’d feel yucky for a few days and waited for surgery day. Surgery day was out patient, a less than 45 min procedure that included draining my sinus endoscopically and a septoplasty to straighten out the inside (to help prevent further sinus infections and bloody noses, that I’ve dealt with my whole life). The outside of my nose looks no different.

I woke up in the recovery room, my sister was there to pick me up and take me home. I laid in bed with stents in my nostrils and saline spray. First couple days were fine, just uncomfortable. On the 3rd day after surgery and 2 days before my post op appt, the side of my face the Dr. worked on, started to swell. I was told swelling and even some bruising would be normal. By the time I went in for my post opp appt, the entire side of my face was swollen and my eye was swollen shut. There were areas on my face, head, gums I couldn’t feel. It was explained to me that often a nerve in the sinus is touched and can cause a temporary loss of feeling, and it would come back.

But my eye. It was swollen shut and protruding. This is where I have to decide if I want to show you guys a picture. I’ll think on that one. It was pretty gross. I go in for my post op and my Dr. looked like he saw a ghost BUT just gave me some antibiotics and sent me home. I saw him the following day. There was no progress with the swelling. He gave me another dose of antibiotics and sent me home and said to come back in 2 days.

I was miserable. I couldn’t eat, I couldn’t sleep, and if I did fall asleep, I didn’t want to wake up. I had no idea if I was blind or not because it was swollen shut. All I knew was that I couldn’t do this anymore. I go back in for my next post op appointment and I am depressed, crestfallen. I am told the same thing again. More antibiotics and come back in 2 more days. At that point my emotional well being was bleak. I had never felt more despondent. As I am being led out of the patient room, something clicks and I realize it’s time to advocate for myself because no one else is going to do it for me. I looked at the Dr and said… “I cannot wake up like this again. I am miserable, can you at least scan me and tell me what you see”. He teetered for a second and then pointed to the back room where the CT scan was. Before I could stand up from the machine, he is asking when I last ate (which had been days) and not to eat anything because he’s calling over to the hospital to get me in for an emergency surgery.

Finally. Something. Scary. But it was something.

He found fluid behind my eye that needed to be drained. He was going to do this by going back in endoscopically and I would be admitted to the hospital for IV antibiotics. The hospital called within an hour or so and I rushed down there. When I came out this time, they wheeled me into the giant CT scan but this one with contrast. The dye that makes the scan clearer. I’m wheeled up to my hospital room. The nurses had just barely got me situated in the bed when the ENT comes in with an ophthalmologist to review the scan.

The ophthalmologist was frantic to get me back into another emergency surgery. There is fluid in my orbital socket that must be drained by drilling through the bone below my eye, in my mouth where my gums meet my cheek tissue. While the ENT calls down to the OR, the eye Dr is quite literally running up and down the halls getting nurses to help him put together what he needs in order to cut the tendon in my eye and release the pressure that has built up so high. He apologizes that he’s got to do this now in the hospital room. As he’s gathering tools, OR calls back and says they can get me in NOW. He tells me he’ll perform the canthotomy while I’m sedated instead. I am immediately wheeled to the OR for my 3rd surgery in 1 week. My 2nd emergency surgery in the same day.

Surgery is complete and I’m back in my hospital room, which is luckily on the ground floor with windows accessible from the parking lot because kids were not allowed to visit. I was able to talk to my babies through the window and ensure them that I was going to be okay. They were worried and wanted to be with me. I am so fortunate to have such good friends because one of them ended up taking them to her house for several days, keeping them busy with her kids. Michelle goes straight to heaven for that. I could never repay her for how much my mind was settled knowing they were having fun. My family was on rotation to come sit with me. My mom and sister made sure I had my Diet Dr Peppers, treats, and new lounge wear.

Guess I’ll show you. This is me the day after the emergency surgery x2. This is progress. Better than it looked the day before. Much better.

And then I waited. No one could tell me how long I’d be in there, because it all depended on my white blood count levels. They dropped one day and then spiked the next. It was all very disheartening. After 5 or 6 days I was clear to go home, but only under 1 condition… I have a picc line placed so that I can go to outpatient IV infusions of antibiotics for an unknown number of days. I ended up going for over a week every morning and every evening. If you have never had a picc line, google it. I promise you never want one. It’s a nerve-wracking procedure. By the time I got to the point of having it inserted, my nerves were absolutely shot. It took a couple tries because apparently I have “wiggly veins” due to being young. The team that placed it was amazing, a group of women who specialize in this. One held my hand, asked me about my kids, tried to keep me relaxed. They explained every step, showed me on the ultrasound what they were looking for. It took about an hour and a half. I was absolutely exhausted but so ready to go home.

This is a few days after I got out of the hospital.

I had back to back Dr and clinic appointments for weeks. And then weekly check ins for a couple months. And then monthly check ins for several more months. All in hopes that my vision would come back, would improve, would do something. I waited. I learned how to drive with 1 eye. Started to get used to bumping into corners. Tripped over the goodest yellow lab who was just trying to stay close to me. I took any suppliment to help with inflammation and nerve damage. I had red light therapy. I started going to infrared sauna’s, hyperbaric chambers, drinking golden milk like it was going to run out. Had massages. I did everything western medicine didn’t. And then there was a day I had an eye appt and he was able to look into the back of my eye. The swelling was down but there was no bloodflow to the bottom of my optic nerve. I would never regain sight. I will never see like I did before.

After that, I had 3 reconstructive surgeries. These were to put back the tendon that had been cut, to remove some skin from my eyelid to help it open up more, and to tighten the muscles around and behind my eye, so that I didn’t go cross eyed from not using it. The last 2 I’ll have to go back in for. I don’t know when but it’s inevitable. I also have permanent nerve damage in my gums, scalp, and cheek.

Meanwhile, I started a lawsuit because this can’t be right. Right? It’s been passed around from attorney to attorney and I’m still waiting to see what happens. I only have 6 more months, under the statute of limitations to have it filed. But there are so many laws that protect Dr’s. It’s very very frustrating. My case is currently sitting at 4 different law office being reviewed to see if they have the right experts to move it forward. There is nothing that will bring my sight back. I know that. I’ve come to terms with it. At the same time, this shouldn’t have happened. I will need surgeries for really, the rest of my life, just to keep it looking normal.

It is my biggest insecurity. I wear glasses all the time now. I don’t “need” them. They aren’t prescription. My right eye is 20/20. There are 2 reasons. First and foremost, they protect my good eye, they also shield my blind eye from the wind (that eye is extra teary). That is the most important thing I can do. Second, I hate the way my eye looks, so they give me a sense of security, a bit of a shield to hide behind. I wore a pirate eye patch on Halloween and felt the least insecure I had since this started.

I have this weird thing inside me that pushes me to do things outside of my comfort zone when I am the most vulnerable. I can’t explain it. Learning to drive again was very important. That is my independence. Once I did that, I planned a trip for me and the kids to go to Disneyland. I had to show myself that I could get around in crowds, instead of folding up. I did it. After that, I decided I was going to travel out of the country by myself. I went to Australia. I did that. I walked miles and miles around Sydney, took trains, buses and hiked. It was incredible to be able to do that for me. I just went skiing. I had to do it. Push through the uncomfy. There are things I will never get back. Sometimes I have moments where I’m just sad about it. Sometimes I feel claustrophobic because of it. I walk into things/people. It’s sucks. But the moments where I push myself to get out of my comfort zone are far more frequent. I’m proud of how I’ve been able to show up and do the work. I’ll keep using it as an excuse when I can’t find things or when I’m trying to get my sisters to do things for me, but that’s really just because it makes me laugh.