Today’s eyes leftovers journal entry:
Feb. 25, 2022
- Eyes are still painful, still crusty, but able to handle some light today. Had to wear sunglasses about 10:30am, rest for a few hrs. in afternoon, handled light for a couple hours in evening with normal glasses.
- Eyes still feel like they are shaking when trying to relax or rest. Right eye focus is better, less when tired
- Pain 65% Sensitivity to light 70%
I hadn’t intended to write in my blog every day, but it’s heading that way. I am doing all the basic eye care things advised by doctors, started before glasses #2 and have done as needed. I am learning that advocating for yourself is much harder than advocating for someone else. Speaking up for others is also so much easier than speaking up for yourself.
Today, I took a step in advocating for myself. When I was at the ER Sunday, except for my first nurse, I felt like they were treating me as if I was a burden, that I was wasting their time. George, my nurse was awesome. He chatted with me some, explained things and took me seriously. He even asked me questions and filled out the MRI paperwork long before the Doctor who tried to talk me out of it agreed. The female nurse who took my IV out just before I left, completely different story. She ripped my IV out, acted like I wasted everyone’s time there. My arm is still severely bruised and hurting 5 days later. I don’t bruise easily. I’ve had IVs before and never bruised like this. When I called to get my neurology appointment, the guy said I was being referred for a “headache and a little blurry vision”. That’s how I was being treated there, I was there for a headache. I took a picture of my arm the day after, and again today. Then emailed and sent it to the hospital.
I got a call this afternoon from the patient care of the hospital. She apologized for my experience and asked if my condition has gotten any better. Well, no two days later, light hurt my eyes and head so bad I am unable to function. Today, I’m wearing sunglasses in the house. She said she would let the medical director know about the rude nurse who literally hurt me. And give a shout out to George for taking me seriously. It felt good to be heard, even if just a friendly voice on the phone.
I was reading through some articles about self-advocacy in healthcare. They had some good suggestions. Research conditions, exams, and even healthcare systems. I’m a research nerd, slightly obsessed. Ask questions, write down and take notes. Verbally speaking up is not in my strong skill set! That’s part of the reason for the blog and typing and organizing. I have two years of scattered notes. Here is organized. I can print relevant information for appts. Nothing I read spoke up about being wronged in a medical situation. Now my arm isn’t super serious. I’m not very angry or hurt, slightly pissed it’s from a needle in my arm and not sparring in taekwondo. But I’ve already been in pain. I didn’t speak more than two sentences asking questions to her, and some at the doctor’s suggestion. No human has the right to hurt another. I don’t know what the nurse’s problem was/is, but it’s not me. She should be held accountable for her behavior before it’s done to someone else. Advocating sometimes has a ripple effect, speaking up for yourself can impact someone else.
I also messaged and updated my ophthalmologist office. Basic care recommended, follow up with cornea specialist the 1st. I could be wrong, not a doctor, just a nerd. But I really don’t think it’s my corneas. I think that would have been seen in the now many eye exams since January. I’ve been told cornea is healthy, along with all other visible eye parts in exams. Even Sunday at ER. Ultimately, conclusion was “I’m stumped”. I’ve heard “I don’t know” by more doctors than I can count at this point.
I do have an observation. This week’s episode coincided with my monthly cycle. From May 2020 to Nov 2021, my flair up always coincided with my cycle. While I’ve heard Covid and vaccine, have affected women’s cycles its usually severity or length. Even in support groups, I haven’t heard much of flair ups that coincide with menstrual cycles. I’m just lucky, I guess 😊 It’s only been 3 months that I haven’t had joint/muscle flair ups every month.
Did Omicron come in and swipe symptoms? If magically, my eyes are only back to slightly irritated by Tuesdays appt, and flair up again next month, it’s noted here. Will my moon time become my moon time? Blood and light allergy. I doubt that as sometimes my right eye is acting like a lazy eye and doesn’t focus or line up with the left.
My research today included Nystagmus. Here is link. When I research though, I read about 10 articles. While I intended to be adding more links, eyes man, it’s the eyes, lol. More links will come.
Nystagmus is the involuntary shaking of the eye. My eyes are shaking all the time. Started Wednesday, my birth of vampirism. Right eye more so. Also pushes my neurological theories. Many possible causes and treatments.
Its not always easy to keep advocating for yourself. Or repeating the same things over and over until you get heard. Keep speaking up, or printing and handing over information, as I intend to do.
Hoping for a brighter, less vampire-like day tomorrow
Becca Dove
My Neurodivergent Path 