Slipped through the cracks

You know how you hear horrible stories of how patients were passed over, accidentally ignored. And horrible things happen to them? I think my health questions and concerns were SHOVED through the cracks. Then when I insisted that I be listened to, I had my mouth taped shut and watched helplessly as a dirty rug was thrown over the cracks, the light was turned out, then the door was slammed shut. This sounds heavy and harsh. And unreal. But, hear me out and maybe at least see my side of the story. And maybe other get a glimpse into other patient stories. Equality in health care should be a given. I want everybody to have access to quality healthcare. Not sure of the best way to achieve that. I certainly thought working and having insurance and consistently seeing doctors and specialist had me on the right track. I first was diagnosed with Ocular Migraine, sometime before 2012. Had this confirmed by an eye doctor of some sort. Still looking for that paperwork. Hopefully it will be included in my medical records when I get them. After more inquiries, I did get an appointment with a neurologist in 2012. He confirmed Ocular Migraine, I do still have that paperwork and even the old sample of Migraine medication he had given me, even though I told him I never had headaches with it. This was early on and I didn’t have headaches then. Ever. In 2016, I finally had another appointment with who I thought would be a different neurologist. It had been 4 years since I’d seen him, I didn’t remember his name or address. I used Google maps to get there and realization dawned on me as I slowly got out of my car that I’d been sent to the same guy!?! I remember he seemed amused, like I was looking for attention. I tried to explain my symptoms, acting them out. One story I told him was about carrying coffee. If I’m going to refill my cup, I would look around to see if someone else might need a refill. I had to stop doing that. My balance my left side was failing so badly, I could no longer carry the cup in my left hand without spilling it. Another symptom I’d had, the incorrectly diagnosed Ocular Migraines caused my depth perception to be so horribly off that my hand eye coordination was off. I couldn’t pick up a cup of coffee left handed. I was constantly running into the left side of door frames. I was falling almost every time I stood up. I was having seizures! I was begging for, paying for help and being ignored! I’d gone back to school in 2013, worked full time, went to school full time, took out a loan for school that I haven’t been able to repay because I haven’t been able to work. I don’t want to default on the loan! I don’t want my former employer to bear the burden of this loan! Gah! I digress. In 2016, the same neurologist who dismissed my concerns did it again. I was diagnosed with Essential Tremors. Google it, it’s shaking as you get older. I have that paperwork with the diagnosis in writing, too.

There is still much more information to come. I might be able to get a nap before my next CT scan around 4 or 4:30 this morning.

I had my craniotomy this morning. Head hurts but less ‘out of it’. Yay for so many blessings. Many people never get good news from hospital stays. I may not can change that, but I hope I can give the underdogs some hope. Maybe stand beside them and be an advocate. Help them demand to be heard.

Baby steps. Thanks for listening.