When Big City Medicine Feels More Like Big Shitty Medicine

My eyes are special, well at least my left optic nerve is. Over 20 years ago, I had an episode of papilledema (inflammation of the optic nerve at the rear part of the eye), that led to the discovery of my brain tumor, and then to a suspicion of NF1. Because of this history, I have an annual eye exam with a neuro-ophthalmologist that includes visual fields testing and the occasional MRI.

I’ve written about my eyes (The Medical Mystery Tour) and in that post, I wrote about my previous eye doctor telling me I needed more care than he could provide, I needed a Neuro-ophthalmologist. He kicked me up the food chain to the Big City Medicine doctors at Hopkins. Last year my experience was fabulous. Well, what a difference a year makes! The following is a recant of my less than stellar experience with The Johns Hopkins Wilmer Eye Institute.

Creating the Illusion of Efficiency

I made the appointment a few months ago. A week prior, I received a text message to confirm. A few days later, I received an e-mail instructing me to log in to the patient portal and complete my check-in. Damn! Sure seemed as if they were ready for me! Like a good patient I complied, lest they follow through on their threats of taking my first-born or a vital organ if I failed to complete my patient questionnaire, cancelled in less than 24 hours, or god forbid was a ‘No-Show’.

Hurry Up and Wait

I breezed in at 11:18 for an 11:20 appointment. I thought I had given my self oodles of time but was stymied by an accident on I-97, curses! I apologized for not being there 10 minutes early as instructed (I truly hate being late.) The receptionist smiled, said, “No worries, they’ll call you when they’re ready.” I found a seat in the waiting room at exactly 11:20, whew!

Thirty minutes ticked by before the tech came to get me for the pre-exam. I wondered if I was being punished for being exactly on time. Cover your left eye; cover your right eye, blah, blah, blah! When we finished, I was told to have a seat in the dreaded ‘second waiting area.’ Eventually, another tech came to get me for the visual fields test, after which she dilated my eyes and sent me back to purgatory.

…And Wait

The waiting area saw a steady stream of patients in and out. Every time a scrub clad employee walked in, my hopes were dashed as fast as they had been raised. No one ever called my name. And not one staff member offered any explanation as to why the delay with my doctor. I admit I didn’t ask anyone either. My eyes were dilated, I could barely fucking see, my day was shot; resistance at this point was futile.

As the TV pumped out a steady stream of mind numbing HGTV, an older couple bickered over which career came first for the Property Brothers. The wife insisted they are actors. The husband was fascinated by his wife’s assertion, could it be true they were actors that became real estate agents? He decided his wife was wrong, the brothers had to be agents first and became actors later. Either way, the wife concluded, “it’s all fake garbage."

Two hours of remodeling mayhem later, my doctor finally popped her head into the waiting area looking for me. She thanked me for my patience, said she gotten behind this morning. I told her, “Being patient doesn’t mean I’m not irritated.” I explained having your eyes dilated kind of screws your whole day, I wasn’t going anywhere.

Everything Suffers

My eyes were examined, I was told my preliminary testing indicated all was stable, and I could come back in a year. I was done in less than ten minutes. I got the sense my doctor felt more defeated by the delay than I did, almost as if she wasn’t fully present with me. How could she have been? She was almost 2 hours behind schedule! I suffered, my care suffered, my doctor suffered, and every patient of hers after the event that balled everything up suffered. How is this quality care?

Health Care Is Broken

At every turn, preventative medicine is shoved down our throats, skin cancer screenings, glaucoma screenings, colonoscopies, dental cleanings and x-rays, etc. The message is: “Get it checked out before it’s too late!” Well, that’s all good in theory but the reality is; doctor’s appointments are a huge investment of time, energy, and money. I will gladly spend two and half hours on my health, but when I know an appointment (on a good day) could have been completed in half the time, I get cranky.

My neuro-ophthalmologist isn’t my only doctor. I go through this kind of crap at least once a month with other healthcare providers and you know what, I’m tapped out! I’m tempted to say fuck it and never go back, unless I start going blind. But who am I kidding; I’ll be back next year because my other options are not worth it.

I hear all the time about choice. Healthcare systems claim you can go off where ever you want for care. Well, within reason. Neuro-ophthalmologist doctors are not a dime a dozen, the closest to me is 40 minutes away. I could choose to go out of network but I’d pay a supreme premium; I can barely afford to stay in network as it is (the price tag for my optic odyssey was $580.00; my patient responsibility is $295.74!)

Inquiring Minds

I’ve chilled out since this chain of events yet I still have so many questions! Where in the morning did my doctor get backed up? Did one of her patients have a medical emergency? Could her office have called/texted me to let me know of the delay, to offer a chance to reschedule? I mean, they texted me about every other damn thing. I wonder what my reaction would have been if, once I arrived, they told me the doctor was two hours behind? Would I have stayed? Probably not.

Is there even a protocol for such a massive delay? I get it, shit happens. No one can predict how their day will unfold. For a doctor’s office, I feel there should be some kind of contingency plan. I wonder if the front of the house had any idea of the mess going on in the back of the house with my doctor. I almost hope they were clueless; at least there would be an excuse for their silence. Rather than the alternative which is, they just don’t give a shit.

Adventures of The (In)Flexible Spending Account

Ever since they came into being, my husband and I have had a flexible spending account (FSA). On the surface it might seem like a god-send, being able to sock away a little pre-tax pay for the sole purpose of medical expenses, especially when dealing with the unpredictable costs of chronic illness. Well not so fast! As these types of accounts have morphed and mutated, so have the rules and regulations. So much so that managing our FSA account has become my part-time job!

When Your Money Isn’t Really Your Money

Even though it is my husband’s pay, the government retains the right to dictate how he can spend this “tax free” money because (technically) some of it is theirs. Any time we use the funds we are required to submit supporting documentation and hope and pray our claim will be approved. If not approved, the FSA gods want the money back, immediately! Oh and our account has no roll over, it’s “use it or lose it.”

Deciding how much moolah to put in the account is a crap shoot. Yes, there’s a handy-dandy expenditure estimating tool but its rubbish. Co-pay and deductible amounts change from year to year and I can never be 100% sure what tests any of my specialists will order. Most years we have easily spent all funds before the benefits year is up. This past year we ended up with an unexpected surplus that had me scrambling to unload it before it disappeared into the abyss.

Lose Money? Not On My Watch!

I take managing our FSA very seriously. Mainly because I am the one generating the majority of the medical bills and I would blame myself for any loss of money. I also consider it my duty to get our monies worth and have become quite adept at stretching a penny.

A surplus?! This was new territory for me, how was I to spend a lot of FSA money in a short amount of time? I consulted our card’s website for guidance (because going all willy-nilly at the drug store is frowned upon.) As I reviewed the generic list of approved items, I noticed one called “first aid supplies” I could only guess what the hell that meant. It had to mean more than Band-Aids, right? Intrigued, I called the toll-free number.

I asked for a definition of “first aid supplies”, the representative was as vague as the website. I was instructed to go to a different website and there I would find the Promised Land, all of my FSA questions answered. I could even buy stuff without a hassle, oh joy! This sounded too good to be true and you know what they say about that.

FSA WTF

The website was super fun. The majority of items were shamelessly overpriced, I’d need to open an account if I wanted to make a purchase, and of course I could not find a definition for “first aid supplies.” And to make things extra entertaining, some purchases require a script from your doctor while some don’t. And it is NOT intuitive! Denture cleaner- Can be purchased with FSA funds and no script. Toothpaste- That’s a no-no, don’t you dare think about using FSA money! Tums- A doctor’s prescription is required! What a waste of a physician’s time!

Feeling my head throb and my frustration growing, I bit the bullet and clicked on the live chat tab. “What are first aid supplies? Can I buy hydrogen peroxide, isopropyl alcohol, or Neosporin with FSA monies and no script?” After a bunch of canned text pleasantries from ‘Sammie’ I received an answer. “Prescription required.”  GTFO!

Outcomes and Lessons

If you know me, you know I don’t give up easily. I kept digging and discovered some of my past Amazon purchases qualified as FSA eligible. I logged into my Amazon account and downloaded my invoices for those items. I then logged into my FSA account, created several claims, uploaded the invoices, and submitted them to the FSA gods. A few days later, everything was approved and I was reimbursed. Boom! It wasn’t enough to spend all the funds but it took care of a big chunk.

Over the past few weeks I spent a good deal of time on the computer and phone that left me feeling anxious, frustrated, and irritated. Not the most enjoyable combination of feelings. Good news is, our new benefit year starts today and the FSA card will be reloaded. I get a clean slate and a chance to do it all again!

This time around I plan on utilizing the account as I always have AND I will make a thoughtful effort to save all extra eligible receipts. If for some reason we have another surplus of money, I will be ready! Until we meet again FSA.