I got a call this morning. Although the doctor yesterday discouraged and tried to tell me it was useless, she put through my referral to a neuro-ophthalmologist. On the Facebook support groups, it’s recommended to get into a neuro-ophthalmologist or a retina specialist. I’ve seen the regular ophthalmologist, and now the cornea specialist, and ER ophthalmologist. Everyone says my eyes are healthy.
While I’m not a fan of the healthcare systems and many in the systems. There are those in healthcare who care and make a difference. The nurse who called me this morning, asked more questions on the phone than the 5 minutes I was examined yesterday. When she called, she was originally scheduling me for June 2nd. I explain I had a neurology referral that was also pushed out until the end of June and am still on the waiting list for post covid clinic. She asked me more questions, and if this is interfering with me functioning. As I’m scared to drive and haven’t been working or taking classes, that’s a yes. She squeezed me on the schedule for March 31st. I may have a long wait, and the doctor won’t be happy. I told her how much I appreciated her rechecking the schedule and asking those questions. But the call made me once again realize how little Doctors are believing me.
One of the reasons I decided to start this blog, is because I’m not being taken seriously by medical professionals. I want there to be a record of my perspective, my symptoms, and my experience. There is no record of me ever having Covid, or how severe. I avoided seeking help for my long-term symptoms because when I had, I wasn’t taken seriously. Blisters on my hands were from washing them too much. My steadily but slowly declining vision from being almost 40 years old. I still got 2 years till then 😊
As I’m talking to these doctors, almost all of them have said, if this is from Covid, then I don’t know. Even yesterday, she threw in briefly that we don’t anything about post covid effects. Now when the pandemic hit, I started thinking about going back to work. I worried not only how Covid would affect my job with cleaning and masks and safety, but how it would affect my clients, possibly my clients who got Covid. So, I investigated it, and researched it.
My experience is very different because before I went back to work, I experienced Covid. I dug into more research and found answers and people experiencing the same things. But for my job, I researched how Covid can cause blood clots and immediately knew that someone getting a massage could be put in danger of having a stroke or heart attack. Also researched how the massage therapy community was handling this issue.
I have seen and spoken with multiple primary care doctors and nurse practitioners, along with those listed in the beginning. It feels like I’m in a game of hot potato, “Not me” when I land on them. The minute they hear it’s from post covid symptoms, my issues are no longer worth more than a cursory investigation, and to say they don’t know. Wouldn’t you start researching possible effects on the eyes, if it’s in your area? Wouldn’t it be worth the extra money testing and trying to figure out symptoms that do not make sense? I was told an MRI was too expensive. And since that didn’t show anything, along with my healthy eyes, it’s okay to wait 4 months to see a neurologist.
It’s even more frustrating that I’m being treated like I want attention or prescriptions, or am a hypochondriac. Except, for the few nurses who listened, made me laugh, or asked questions and then put me on the schedule earlier. I don’t like pharmaceuticals. . I would avoid doctors and appointments if possible. The fact that I’m seeking help and telling people I’m in pain, says it’s serious.
It was a moment for me today. My dad actually told me not to stress my eyes. I think it was the first time in my life, he didn’t tell me to ‘tough it out,’ lol. I know he’s worried. He’s headed to my next visit to see the first ophthalmologist again on March 7th, next Monday.
Sending healing prayers out
Becca Dove
My Neurodivergent Path 