The Longest Drive Alone

Welcome to episode seven.

We're stepping out of the shadows of the gauntlet into the recent history.

In this episode, we're going to be talking about a specific date.

That was the day I finally got a name for what was happening inside my body.

But more than that, it was the day I realized that if I didn't fight for my own life, nobody in a white coat was going to do it for me.

This is my soul solo Ms.

Journey.

So I had to drive about 60 miles from Fredericksburg down to the VCU Medical center in Richmond, Virginia.

And my car was not doing well.

It was dying.

It wouldn't start consistently.

Every once in a while, it wouldn't start at all.

And somehow I had to get it fixed and taken care of.

But I managed to get it down I95, which, if you live in Northern Virginia, you know that 95 is sometimes a parking lot, sometimes a speedway.

Now, I finally walk into the clinic.

I get down there, park my car, walk into the clinic.

Walking through that places like a maze.

And I check in and I get called back.

And the triage nurse that's there, that's assigned to do my intake, She's there to, you know, type all this in for the doctors, for the neurologist.

And luckily I have it all memorized.

And it's very complex and she can't type really well.

And she even tells me that she has arthritis and carpal tunnel and she can't type.

So I'm annoyed already and I'm repeating myself continually.

And it got to the point where I just reached across the desk, grabbed the keyboard, and I started typing in my own information.

She's not really paying attention to me.

It's a Friday.

They're thinking, like what people do.

They're thinking about going home, they're thinking about the weekend.

But I'm there to be seen.

I'm there to get some resolution for what's happening in my life.

So I get done with the triage nurse and they send me back into the waiting room.

An hour goes by and they forgot that I was there.

Needless to say, irate is not a.

Not the accurate word.

It's a understatement.

Lights are starting to go dim.

I can see people, you know, getting ready to leave for the weekend.

And I walk up to the desk and I say, hey, this is Tim Bryan.

I was supposed to be, you know, met by the doctors an hour ago.

They go, oh, oh, oh, oh, oh, oh, oh.

And they were going to send me away And I said, no, I live over an hour away, I'm being seen today.

And I wasn't going to, you know, drive back home in a car that's not starting and waste a day because I had to take a day off of work for this.

So eventually they did let me in the back, had to be seen by neurologists.

So I'm sitting in the exam room, I guess, and meeting with a student doctor and he's reading through the notes from the neurologist that I fired and he's reading through all the MRIs and the spinal tap, lumbar puncture as the medical field likes to call it, and he's asking me questions.

And basically we're just going through everything that I had typed for their triage nurse into their notes again, annoying but necessary.

And that student neurologist says, okay, well I'm gonna bring my teacher in on this and we're going to talk to him about this.

So the instructor comes in and I'm rehashing the story yet again.

Now the teaching neurologist is not listening too well and he's getting things wrong that I put in there, you know, getting the notes, getting the notes wrong of his student as well.

And my annoyance level is through the roof.

And they're asking me about, you know, what kind of treatment am I looking for, what am I looking for out of this visit.

And I let them know that I am the sole breadwinner in the family, so I would want a treatment that doesn't impact with me being able to work.

And I, I think he took that as meaning I don't want any treatment whatsoever.

And we get done with it.

And I let them know about the incident that I had with the kids where my left side goes numb.

Different things that have been going on because I was tracking everything pretty well, stuff that I thought would be relevant.

And so it's Friday, about 4 o', clock, maybe 5 o'.

Clock.

And the teaching instructor goes, well, we, we are pretty sure you have Ms. And it's called clinically isolated syndrome.

And we're going to set you up with a follow up.

And that's it.

Yep, have a good weekend.

And so the student and the instructor leave the room and since it's getting close to closing time, nurses forget that I'm there.

And I waiting there 15, 20, 25 minutes, nobody.

So I walk out and walk to the front lobby and lights are out and there is two people at the front lobby and they're like, who are you?

And I'm like, I've been back here waiting for somebody to tell me it's okay to go.

And the docs want to set up a follow up.

And they're like, oh, well, our computers are down for the day because we didn't know that anyone was back there.

And I said, well, I, why don't I just call and set up the follow up on, you know, I'll call in on Monday and set the follow up then.

And they're like, okay, that's fine.

I make it to my car, I am fuming, I am incensed.

There's not words for how I was feeling.

And my car doesn't start and I'm pounding on the steering column, I'm shouting, I'm yelling, I'm smoking cigarettes.

I am just furious.

I pop the hood, I do a little jury rigging on the car, and somehow I got it to start after about 20 minutes or so.

And I pull out of the parking lot.

Luckily, it's free parking.

Now, I want you to remember that this is Virginia, this is a Friday, and this is i95.

Now if you're not from here, i95 can be a parking lot on a bright sunshiny day with not a drop of rain on the ground.

And it was a slow ride back home.

On the way, I called my wife, let her know that, yeah, I do have a diagnosis and that I'm gonna have to call in on Monday for a follow up appointment and I'm not really happy about it.

And she can tell that in my voice.

And she tells me to drive safe, that she loves me and yeah, they're waiting for me to come back home.

And that drive normally takes, with no traffic, about an hour.

This time it took almost two.

And I was not in a good mood, shall we say?

So I get home, I let my wife know everything that happened and my frustration levels through the roof.

And remember this time, I still have young kids, so I still have to put on the happy face that, you know, papa's okay.

In my mind, I have to do that anyways.

So she tells me that, you know, hey, we'll get through this.

It's okay.

We will get through this.

And that's when I snapped.

I let her know that she doesn't have Ms.

I have Ms.

I have to get through it.

She doesn't have to do anything.

I'm the one that has to do the MRIs, the lumbar punctures, the appointments, the tracking of all symptoms, the exhaustion, the lack of mental clarity, the waiting for the bomb to go off in my head.

And I wasn't nice to her.

It was not one of my better moments.

So Monday rolls around, and I'm looking through the clinical notes of the encounter on Friday.

I find that the instructor had put in there that I was rude and I was not a trustworthy person to trustworthy historian, and that I was resistant to any and all treatments, which was not the case.

I was fine with treatments as long as I could still work.

The whole being rude thing and untrustworthy.

Well, I. I don't know what to say to that.

Having to wait and being forgotten about multiple times, It wasn't acceptable.

So I called up the patient advocate and ripped into them.

And I said, hey, this is my experience.

This is what happened.

This is crap.

This is unacceptable.

And what this doctor wrote, you know, is a potential lawsuit because it's an outright lie.

And the thing I didn't tell the doctor, it's a trick that I learned from dealing with the Veterans affairs, is I brought in a tape recorder.

I recorded the whole conversation.

And you're not supposed to record conversations.

You're not supposed to, you know, take flight photos or every cell phone on.

But I learned that doctors lie.

And I let the patient advocate know I have a recording of this whole conversation that we had.

And I'm more than willing to, you know, speak with a lawyer and file a malpractice suit.

Well, when you say that to a patient advocate, the call ends quickly.

About a day later, I got a call from the nurse practitioner there, the head nurse practitioner there, apologizing up one end and down the other.

He was one of the people that was standing at the desk as I was leaving.

And he said, listen, I totally apologize for everything that happened, which is good to hear.

And he said, you're probably going to say no to this, but I want to make it right.

And I want to get you over to the head of the Ms. Neurology department as quickly as possible, and you won't have to deal with stuff like this again.

And he personally vouched for that neurologist and their office.

And being without any other choices, any other options, I said, okay, let's do it.

And that begins what I call recent history.

Now, I always like to end these with what would I tell myself now?

And I would look at that guy sitting in a dead car in a parking garage, gripping the steering wheel.

It wasn't, you know, it was evening.

I tell that guy, hey, you did what you were supposed to do.

You did everything right.

You did everything you're supposed to do.

And don't feel guilty about the anger that you felt at the clinic.

You don't regret, you know, snapping on the drive home.

You're being gas lit by a broken bureaucratic system and you're 100% right to throw your weight around when they tried to lock the doors on you.

And you know, when you got home and you found the falsified clinical notes, your instincts to fight back and call the advocate, that was correct.

You did the right thing.

And to get the record corrected is exactly what you need to do.

And you proved right then and there that you have to be a fierce advocate for yourself.

If the doctor doesn't listen, if they misrepresent your words, you fire them.

You get rid of them.

You find somebody who treats you like an equal partner and you're not a patient anymore.

Now you are the manager of your health and of this whole journey that you're going on.

You are in charge and what you say goes.

All right, thank you for listening to my solo Ms.

Journey again.

My name is Tim Bryan.

Kind of tired of going on this journey by myself, so I'm glad you're here listening to it with me and hopefully you get something out of it if you are in that process of getting the diagnosis.

Don't feel bad about being an advocate for yourself.

Don't feel bad about having to raise your voice.

Be respectful, but don't let them get away with not treating you with dignity and the respect you deserve.

You can listen to all the episodes on my website, mysolomsjourney.com.

And I'll talk to you next time.

Be an advocate for yourself.

Thank you.