Ready. Set. Advocate.
The past few weeks I’ve had continuous aura symptoms most days, with very mild, to no, headaches. At the same time my normal ear pressure problems with large barometric changes have turned into the sinister ear fullness in the right ear, a warning of a potential Meniere’s attack. Followed by two potential mild Meniere’s vertigo attacks over the weekend. Sunday night it became clear I needed to do something. My insurance had just changed, and I knew little about my new coverage so I took an emergency personal day Monday to set the stage for another round of prescriptions and appointments.
It is a whole other story of self advocacy and research, but despite being super sick I managed to land two of the best doctors in the region for my respective conditions. It’s time for me to mention them by name, since in future posts a lot of my information comes from them, and I have yet to find it elsewhere on the internet. They work for different hospital systems, one is an ENT / neurotologist, the other is a neurologist. They both independently came up with the same diagnoses for me, and both used the same criteria. Both of their treatment plans have allowed me to crawl out of the abyss of vertigo and disability, and somehow manage to stay out.
While they are my heroes, and can fix anyone in similar pickles as me, they both are a part of large teaching hospital systems, which means TONS of bureaucracy. They work where they do so they can continue to advocate for good research, and because both of their programs can assist people coming from out of state. Though getting care from them means with dealing with the necessary evil of uncaring admins, constant transfers, and confusion. In comes the advocacy.
Paging Superhero Headache Specialist: HELP I’m in Nonstop Aura
On Monday I called and left a brief message with the admin of his department, since pretty much all of his scheduling needs to go through her, since if you call the main scheduling line they will say he has no appointments until a zillion years from now. Initially the soonest she would give me was September, and I said that while I did not think it was super urgent (though 24 hours later I would feel different) I thought I needed to be seen sooner since while my headaches were a lot better, my auras were continually flickering in and out and nothing I’ve been doing has been helping.
Tuesday I go back to work and by the end of our team meeting the room is looking like a scene from Poltergeist. The lights are flickering, there is weird smoke and bubble like patterns going in and out of my vision, I feel lightheaded, and the most stable I feel on my feet is that I’m floating, with any slight turn of my head the room spins. I take my full abortive cocktail and don’t feel much better. I recognize my situation is more urgent than I thought, so I call the office back.
This same admin has dropped the ball on me many times before. She actually cancelled my initial appointment and NEVER CALLED to reschedule, I luckily due to my aura brained crappy memory called to get the time a few days before what was supposed to be my appointment, and that’s how I found out. Thankfully she realized she had really dropped the ball since I was handpicked by head of the clinic to need an ASAP appointment with the head of the clinic only, Dr. Rosenberg, and my reschedule was only a few days later. Anytime she has been involved in my care it has been the same story. She also completely screwed up my Botox authorization, and thankfully my old clinic managed to pencil me in. So she and I have A LOT of history.
So I call, get a different and much nicer person who promises to research it and get back to me, and I gave her a bit more of the history. I call the main line a half hour before close to remind them I needed a call, they sent out an email. The nice lady calls me back at 5:10pm and tells me that as of Monday the doc had called in steroids, and wanted me to be scheduled for an urgent appointment. Which means all this was actually worse than I thought, if based on my mild complaint Monday, and this was how he felt about it. She got me in for Friday. Though the steroid thing was a problem, since I hadn’t restarted steroids yet because it had been only about a month since the last round, and I developed horrible nosebleeds, and overall clotting issues. Which I am actually OK with, but it was something I wanted my doctor to be ok with too. So the nice lady says she’ll do her best to get him.
The next morning I call my pharmacy and confirm that indeed the doc had called in a prescription Monday, which means I should have at the latest been informed Tuesday morning, and scheduled Tuesday morning by the admin who never follows through on anything. So I called the clinic and asked to be transferred to the admin’s boss and left a detailed voicemail. I gave it until noon to get a call back since I had so far taken one full dose of steroids, and a partial dose which could turn into a taper if need be.
Low and behold after trying to not to speak to miss unhelpful I get transferred to her. I pretend like we have never spoken before and said that I needed to get them my new insurance information, and get an answer to my fairly important medical question. It takes three tries and a half hour of mostly being on hold for her to take it seriously. I explain that my doctor likely had already given an answer, which she ignores and she grabs the nurse practitioner who freaks out that I am on the steroids based on what happened just a month ago. However, I know my doc is a maverick and plays by a different set of rules and I am torn by this answer.
I then have a meltdown, since in the middle of this I was also calling my ENT’s office and getting nowhere. I call my boyfriend to calm my butt down and keep myself from going postal on both offices.
Thankfully, the nice lady calls me back around 5, apologizing that she couldn’t find my doc before clinic and he had read all the notes about the last steroid round, and was cool with the nosebleeds. She also put things together to get me into the online system, and was super helpful. I actually felt bad for not waiting, but given the history with the crappy admin I wanted to be sure I got my insurance info in on time, and that my medical question was being followed up on.
Then, the supervisor called me back, and apologized. She actually had not been informed by said admin that I was not informed Monday of my need to be set for an urgent appointment and that medication had been called in for me. I explained normally I would not complain, except every time she has had responsibility for my care something similar has happened. I detailed 3 or 4 of the most grievous offenses. I was informed that due to volume they had a new staff member starting next week, and that my information was very helpful. And that they also take a close look at performance and follow through with reprimand. Essentially code for she’s in trouble. I don’t care to get people in trouble, but when outcomes are always bad with the same person something needs to be said. I discussed that I get the situation of the office, needing to keep track of doctors and EVERYTHING else. That my entire career as a licensed mental health clinician has meant being the eyes, ears, and hands for at least one psychiatrist at a time, on top of my own stuff. Though I followed that by saying that if I failed to relay important information I could lose my job, if not my license to practice. Thankfully due to letting out my vitriol with my boyfriend I was calm and collected throughout these calls.
Neurotologist HELP Please the Meniere’s Might Be Back!
My first call Monday was to my ENT/neurotologist. I scheduled and appointment for August, and got a message through to the nurse. I asked for my Edecrin (the diuretic I take for Meniere’s) to be re-ordered, and ideally any testing I might need before the appointment.
Then the waiting game begins. Tuesday made the migraine’s urgent again, so I didn’t call back until Wednesday afternoon (past the 48 hour deadline) I left multiple messages, and made it clear I needed some info since my neurologist will need some idea of what is going on with my ears to properly treat the migraines. Low and behold yesterday I got the message that the new Edecrin order had been sent to the pharmacy, and that I needed to see the doc and get a new audiology work-up ASAP (duh!).
A few more phone calls later attempting to get a human being on the scheduling line and I have an audiology appointment for today at 2pm.
Unfortunately some of the best doctors are locked into some of the most bureaucratic backwards hospital/clinic systems. It’s important to advocate, keep calling, and keep cool whenever possible. I also try to never be mad at the doctor, since most of the time the doctor isn’t getting the message from their staff.
These awesome doctors also work for these bureaucratic hospital systems because it gives them the ability to teach, do research, take out of state cases, and really make a difference in the field. A headache clinic with blaring florescent lights and a mean lady the desk is FINE if the doctor is a trailblazer in the field. It is worth the work to get through.
Also, more and more of these maverick awesome doctors are starting to use E-Chart programs to stay in touch with their patients as a work around for all the telephone game madness. Now that I have a smaller laptop, and a tethering plan on my phone I plan to use E-Chart next time, and will let you all know how it goes!