Consuella began experiencing symptoms in November 2019. She has had a difficult journey getting a diagnosis, and a harder time still during the pandemic. She has shared the ups and downs of her experience here...
I remember this day so vividly. It was November 2019. I woke up, got my son to school. And I rubbed my eyes, because it was distorted in my right eye. I thought it was just because I was tired. I didn't know at the time what it was, so I went on with my day.
I met up with my family for lunch and I was glancing at the menu and that's when I really noticed how bad it was. The text on the menu was swirled, and the middle was purple and blackish - like a big oval shape. My other eye was unaffected.
This is when I started to panic.
I was told about a year ago earlier that I had to get glasses, but just never got around to it. I live in the US, glasses are expensive. So I figured it was that, or I was scared I was having a stroke or something.
I went to the emergency room after I got my son to a sitter. It was around 7PM and they had me wait in a room, glanced over my eye with a light, then sent me to another hospital. There I was taken to the emergency room and they began drawing blood, and dilated my eyes. I don't the names of the procedure but they flashed lights in my eyes and touched it with a tool. At this point it was 2AM, and they just kept taking my blood pressure and more tests. The staff seemed annoyed I was there, like maybe they thought I was faking it. One nurse was outwardly getting mad at me because I winced because she couldn't get a "stick" in me. One of the doctors said to me, "as much as you don't want to be here neither do I", because I had to blink as my eye was burning from constantly being messed with, and I was tired. I was released at 10am sent home, then was scheduled for a appointment with the eye specialist the next day.
I came back at 8AM and they resumed the same tests as the night before. Left there, was told to come back the next day. This continued with this office for two weeks, during which time, I was treated rudely again. I had never done any of this tests before and would blink. I tried my hardest not to. I was told, "I need to cooperate, because what it it spreads to my other eye and I go blind". All the staff were ruthless.
I was sent to neurology next. They did a scan of my head where they found a growth on my neck. So I had to have an angiogram done. It was so painful I was shaking in pain. After that I was sent home to wait on the results. I was called in and they determined the growth was an infidibulum, because they weren't sure if it was an aneurysm.
After that painful, awful ordeal, I was sent back to the eye specialist. They had me take photos of my eye with the dye. More poking around and dilating. More blood drawn. It had been a month in a half and they finally had a diagnosis for me. The doctor vaguely explained what it was. Super vague I left with more questions than answers. I'll never forget this, he said, "it will either get better, or it won't". And left it at that, nothing else.
I tried to calm myself until I left but I was furious. How can someone be so cold and vague about my eye issue? I wanted to scream. He prescribed me oral steroids for a week; I took them. I had a feeling it wouldn't have any affect on me because I had taken steroids for my asthma a lot of my life. Nothing happened. Nothing more offered. No resolution. No hope. I felt myself feeling alone and hopeless.
I stopped going back to that office. I took some months to calm down and try to research more for my own sanity. I tried to call around and get another specialist but they either weren't covered by my insurance, or weren't accepting new patients. The one nearest to me didn't even know what PIC was. Then Covid happened and they were shut. I had to homeschool my son and none would allow weekend appointments. So currently I'm hoping it just doesn't get worse.
I'm in a better place mentally though. When I first tried to put eyeliner on with my good eye shut, I cried. Makeup is a big part of me. I am known for intricate eyeliner designs. That was a huge blow to me, and still is. I've gotten better at it, but some days I have to keep wiping it off and starting over. Driving at night is more difficult as well. I fear that when I do get to go back to work I won't be as proficient at my jobs. I did computer work for a return department, and cant imagine how quickly I would do that now with one eye.
Thank you for hearing my story.
Commenti