WOW was it an eventful Friday. And not the kind of eventful Friday you want to have. The kind of eventful Friday that wasn’t supposed to be eventful and then turned eventful in the worst way.
I had an 8:30 am appointment at a neuro-ophthalmologist an hour and half from where I live. We had to leave at 6:30 am, my mom had to drive to me the night before and sleep over.
A little backstory: I started seeing these grey circles in my vision and about a week later I went to the eye doctor. He said my optic nerves were swollen, called it “pseudo-tumor cerebri” basically meaning, my body is showing symptoms of a tumor without actually having one. So he wanted to send me to a neurologist.
This is where I learned for the umpteenth time that I can’t rely on anyone but myself to get shit done (okay, or my mom, she also kicks ass with doctor bullshit.) because only after 3 phone calls and then showing up to the office myself to request they send my primary doctor the info for the referral, did the info actually get sent. Y’know, for an office that said I shouldn’t sit on this issue, they sure were sitting on getting my referral info to the right doctor so they could get my shit to Tricare.
Anyway. My primary got the info and got the referral in and I went to my appointment. I took a Tylenol for the headaches I’d been having all week, so I was nervous, sweaty, and pissed they made a big deal about me having my ice water with me. They checked my vision, did all their work-up stuff, dilated me, and let me sit. She came in, looked at my eyes and then said along with the swollen optic nerves, I had “cotton wool spots” in my eyes that she didn’t know how to relate to my optic nerve issue, so I needed to see a retina specialist because she was worried there wasn’t enough blood circulating to my retina. And to rule out an actual brain tumor, I needed an MRI. And I needed to do it all that day.
We walked back out to the waiting room and the woman at the front desk called and tried to fit me in last minute to all these places. The afternoon that was going to be about museums and eating food turned into an entire day of doctor appointments to make sure I wasn’t going blind or suffering from a brain tumor. It could be worse, I know. But new diagnoses, not knowing what’s wrong, being sick and prodded and scoped out, it’s all very emotionally and mentally exhausting. I tried to contact my primary doctor so they could put in the referral to the retina specialist because with Tricare, a specialist can order a procedure (no need for Tricare approval for an MRI) but they can’t refer me to another specialist. I need another referral for that. So I gave the woman the fax number, and only called like 12 times before someone answered me so they could put in the referral to Tricare.
We stopped at my sister’s to pick her up and we went to my MRI. They got me pretty quickly which was nice. They stuck me with an IV needle and then took me to “the truck”. They built the building without any plans for a place to do MRIs, so they do them in a trailer the size of an 18 wheeler. It was kinda cool, actually. We walked onto this platform that brought us up and she opened the door to let me in. They put the “football” helmet on my head, which wasn’t as .. claustrophobia-inducing as I worried it would be. And they played America’s top 40 for me, which was cool. MRIs are surprisingly relaxing when I don’t have to drink nasty shit until I explode, and hold my breath for 20 seconds at a time while lying on my stomach. (read about that here.) When that was done, they gave me pictures of my brain on a CD, kinda cool. And then I was told to expect a call from the neuro doctor that day, which I never received. Are we surprised? No. I eventually did get a phone call from her saying it was all normal and I needed to schedule an appointment to get a spinal tap done. WHYYYYY? We grabbed lunch and then we drove back to my sister’s and dropped her off so she could go to work and we headed to the retina specialist. There, they tried to tell me I’d have a $12 specialty copay, and when my mom argued, the woman said that’s what they charge all their Tricare prime patients. Which…. is weird because, like, I’m chronically ill and I’ve had Tricare prime for 24 years and never have I been charged? So… you tell me who’s wrong.
We didn’t pay anything.
They took me an hour later that my scheduled appointment time but I was trying not to be annoyed over it because they did fit me in last minute.
They did the same vision, pressure, and other testing the first doctor did and they dilated me again. YAY. They took so many pictures of my eyes, so many bright flashes, the room was purple.
They hooked me up to another IV and watched it flow into the arteries and veins in my eyes. Everything was fine.
We were finally done and we went to the mall so I could get cheesecake from da factory of cheesecakes, and then we visited my sister at work and went home. We stopped at KFC for mashed potatoes and chicken and then continued our drive.
There are no words for the amount of exhaustion I felt both mentally and physically. I was so totally and completely done with the day, and I was so happy to be home, with Kyle, in bed.
He had his own blood work to do for work that morning, so lucky for him, he got to skip all the fun stuff. I have a spinal tap to get done next week, and I am not looking forward to it. I realize it’s all in my head and it won’t be nearly as bad as I’m expecting it to be, but.. still. UGH.