I didn’t post as much last week. It was a really long week. Within 3 days, I had an EKG, echocardiogram, CT scan, carotid ultrasound, and blood tests. So far all results are back except a blood culture test looking for any infections in my blood. Everything has shown that I am healthy. There are no blood clots, obstructions, or abnormalities that could be causing my symptoms. All eye exams have shown that my eyes, cornea, optical nerve, retina, and all other visible parts of my eyes are healthy.
My current symptoms: bright light still causes extreme headaches but is slowly getting better. Saturday and Sunday were good days. Saturday, I didn’t wear sunglasses all day, but it was cloudy, raining, and I didn’t go in fluorescent lighting. Sunday, the sun was out. My eyes seemed to be doing better. I opened my balcony and sat in the sun for a few mins. My daughter tells me this morning the sun is brighter. It must be because I feel like I went backwards today. My headache was there when I woke up, all light is hurting more today. Right eye is functioning less. When my eyes are stressed, I get pain shooting through my face with the headaches. I still feel like I’m looking through a static screen, more so on the right eye. It still slightly shakes when stressed. My inflammation in my fingers and toes have returned, but is mild atm.
Yesterday, I was excited. I watched a cartoon movie with my daughter for the first time in a month. I thought things were slowly getting better. Changed immediately this morning. My eyes and head hurt. The fluctuation with my “leftovers” is one of the most irritating and frustrating experiences. It’s hard to explain symptoms that come and go, and don’t necessarily show up when I have appointments.
I managed to make it a few days without napping. I had to rest my eyes about 3 hours midday today. I attempted to nap, but was harassed by my cat, Batman. Love him but he’s a jerk when he wants attention, and he always wants attention.
Emotionally, this past month and week of testing has taken a toll. I’m exhausted. I did get a call today about rescheduling my neurology appointment. It’s amazing how much different the perspective of the referring doctor can make a difference on when you get scheduled. I got a referral from the ER and was scheduled for June 28th. I got a referral from my Covid doctor last week, got a call asking which of 3 time slots I would like to schedule on April 6th. But last time, I had spoken to the same department, they couldn’t schedule me until the end of June. Good ol’ U.S. healthcare. So next week is the neuro-ophthalmologist, week after neurologist. Had a few good days, but today was a rough one.
I’ve still be keeping up with Dr. Husel trial. I’ve listened to family members, nurses, pharmacists, doctors, and experts give testimony. Reading the comments and listening to the non-medical people struggling to understand the medical terms got my brain thinking. There is such a huge gap between medical terms and knowledge and the typical non-medical person that many people struggle to understand when serious issues occur. The expert doctor testifying today, mentioned that if a person with covid had an oxygen level that fell below 90, they should go to the emergency room. THIS WAS NOT KNOWLEDGE GIVEN TO THE PUBLIC! UGH! Now I didn’t have major breathing problems, either time with Covid, but I have mentioned getting an oxygen meter to check for a friend that was sick.
No wonder the U.S. struggled so much with the pandemic and getting the public to understand. Someone mentioned in the comments while I was watching the trial, there are no medical advocates. While hospitals have different people employed to help, there is no middle person, helping to understand medical terms and advocating for the patient that is not being paid by the for-profit hospital systems. Unless you happen to have a relative with basic medical understanding, they can be super helpful. Why don’t we have medical advocates, with at least basic medical knowledge?
I’m not a doctor, nor a medical expert. But I’ve taken intensive anatomy, pathology and have continued to review and research during the past 15 years as a massage therapist. If I come across a medical condition that I’m unfamiliar with I’ll research it, especially if there are any contraindications for massage therapy. I hold a limited scope massage therapy license from the medical board in my state. While people see it as a luxury, that’s not quite what I do or my education. During my psychology journey for the past 10 years, I’ve continued to study the brain. I took the psychology GRE for graduate school in 2019, and the section I scored highest in was neuropsychology. My massage background helped with that. While I’m not a doctor, I do have a solid understanding of medical and health issues. Pharmaceuticals, not so much. I tend to avoid those when I can. The average person doesn’t have that basic health knowledge. Why are we not teaching this to our kids? My kids have both taken basic anatomy during online school, with mom adding to what they were being taught. Sorry, not sorry, my children.
Given my knowledge, it’s even more frustrating that I’ve been telling doctors for 2 months that I think my eye and head issues are neurological. If there are no issues to eyes, or blood obstructions, why is my right eye acting all weird? If I close both my eyes and open them, my right eyelid opens slower. It’s delayed. My vision is also delayed and goes in and out of focus. If it’s not the eyes, it’s brain or neurons. I got to see my brain this week, and my heart. That was interesting, both show healthy. Ptosis of the eye is what my Covid doctor put through on the referral that got my appt moved up. That’s the only physical thing they’ve found wrong, my eyelid is drooping and delayed. I’ve mentioned this to other docs, this one saw it himself and listened.
I think there is still one test that takes awhile to come back, a blood test but that’s it until next week. I’ve decided to take Saturday, and most of Sunday to start organizing and working on my garden. Hopefully I’ll be able to tolerate light better. Yesterday I could, I opened the balcony for the year and enjoyed the sun with cats for a short while. I miss my plants, and the sun. I have an old plastic greenhouse, maybe I’ll cover part of it so I can have a shaded area to work. Or nighttime gardening may be coming, lol. It’s time for green things.
Sending healing prayers,
Becca Dove
My Neurodivergent Path 