Empowering Veterans Through Healthcare Advocacy

In this episode of Living Chronic, Brandy Schantz and veteran nurse Helen Perry discuss the importance of self-advocacy in healthcare, particularly for veterans. They explore the complexities of medical systems, the significance of researching symptoms, and the value of keeping detailed health records. The conversation emphasizes the need for effective communication with healthcare providers and the role of patient advocates in navigating challenges. Listeners are encouraged to take an active role in their healthcare journey, ask the right questions, and utilize available resources to ensure they receive the care they deserve.

Transcript

Brandy Schantz (00:01.25)
This is Brandy Shantz and you're listening to Living Chronic. Today we are talking about veterans. This is our special mini series, Veterans Medicine and the Mission Left Behind. And once again, I'm here with Helen Perry. She is a veteran nurse, caregiver, and all things healthcare guru, as well as a nonprofit executive. So welcome back, Helen.

Helen P (00:27.86)
Thank you.

Brandy Schantz (00:29.74)
So today we really wanted to talk about something that you and I have spent more time in our lives doing than we ever wanted to do, and that is advocating for yourself, for your loved one, for your patients. If you're a nurse, how do you advocate for the person that you are caring for, often that person being yourself? So most people know my story. I obviously...

being somebody with no healthcare background whatsoever, had to advocate pretty hard for myself to get a diagnosis when something was quite clearly wrong. And you, your husband, has benefited from your expertise as a nurse, nurse practitioner, and a military healthcare provider for advocacy when he needed it the most. So.

Tell me a little bit about your background and advocating for yourself, your husband, your patients, and what you want to help everybody to learn today.

Helen P (01:32.126)
Yeah, so I think, know, first I want to say that for people out there who are listening, whether it's veterans or family members, if you are feeling like you are in a system and you are stuck and you don't know where to go and it shouldn't be this hard, yes to all of those things. I just want to, I just want to like put it out there that like the systems that we work in are intentionally complicated.

And it's because the more complicated these systems are, the less people who will make it through the bizarre puzzle of resources and actually come out on the other end. So it is kind of intentionally made this way to be this frustrating. And it's unfortunate that families get caught up in this. I can remember, I was a critical care nurse when Matt...

and started having seizures. So my husband was blown up in Afghanistan, hit by three very large improvised explosive devices on the same day, actually hours, within hours of each other. But in 2008, we didn't know what we know now about traumatic brain injuries and diffuse axonal injuries and all these, you know, brain trauma and overpressure injuries. And so he, you know, carried on the way that a lot of people did.

And in 2014, he developed these life-altering, life-threatening seizures. you know, people are probably familiar with seizures, you the big shaky types. There's also lots of other subtypes of seizures, like staring spells, which are called partial focal seizures. Sometimes people call those petty mall seizures. There's also this thing called focal awareness seizures. Matt has the wonderful luxury of having all types of seizures. His brain just likes to kind of do its own thing.

And when he started having seizures, he started with grand mal seizures. They were very long and they qualified as something called status epilepticus, which is a life threatening emergency. It's basically a prolonged seizure of the brain that really risks basically burning out the brain and patients becoming brain dead because of it. And, you know, he started having these seizures and it was just out of the blue. And I can remember, you know, initially

Helen P (03:50.238)
The doctors were like, it's drugs. And I was like, that man has not used a drug in his life. Like it is not drugs. Do a urine drug screen. And they, so they did a seven panel. There's different types of panels of drug screens. can do, they did a seven panel and it came back negative. And they said, well, it could be one of the other. And I said, no, do the 11. If you think that this is drugs, like do it. And so they did the 11 panel and it came back negative. They actually did a second 11 panel, came back negative again, right?

And the whole time I just kept saying, you know, like it's really weird because like he had this really bad TBI from Afghanistan. Like, do you think this could be related? And they kept saying the same thing. that's so rare. It almost never happens. It's so rare. It almost never happens. And this was a series of doctors that we had gone through, you know, from the emergency department, you know, who insisted it was drugs all the way through, you know, seeing neurology on the Navy base who said, you know, that head injuries were not the cause of epilepsy. And just for anybody out there like

head injuries actually are one of the leading, if not the leading cause of adult onset epilepsy. And so we just kept getting, we kept getting the run around, you maybe it's a sickness, maybe it's drugs, like God, they kept coming back to that. And then at one point, even, you know, cause after they would start him on medication and he wasn't responding, then they started writing things in his medical notes, like wife claims to be a critical care nurse, wife claims to be giving service member his medication.

Brandy Schantz (05:13.646)
Mm.

Helen P (05:13.673)
And I was like, what do you mean claims like like you are you are prescribing the medication. We are giving it the way we are prescribed. Like, what do you mean? Like it sounded so accusatory and it kind of was like they were sort of backdoor insinuating that like we were just, you know, at one point a provider even made comment that like, oh, you're just out for the V.A.'s money. And I was like, yeah, I was like, oh, my God, like he doesn't even he doesn't want to retire. Like we don't want any of this.

Brandy Schantz (05:26.574)
Mm-hmm.

Brandy Schantz (05:37.027)
wow.

Brandy Schantz (05:43.618)
Right.

Helen P (05:44.102)
And so from then on, I started every time he would have a seizure, I would take him to the emergency department with the military and I would make them draw his his drug levels. So his his anti epileptic drug levels, we can actually test the blood to see if they're in therapeutic range. And they always were. And that was basically proving that, like, hey, like, we're not doing this. Like you're making this accusation that we're just being difficult. And unfortunately, we're the ones having to live this nightmare of like not being able to control his seizures. Like, what do want from us?

And they gaslit us. mean, are you sure he had a seizure? Do you know what a seizure looks like? Like I'm a critical care nurse. You know, I work at the time I was working with patients who would have seizures in the hospital all the time. Like, yes, I knew what they look like. I can talk you through the different, like, you know, symptomology and presentation of like different focal areas of seizures, like all these things. But even even for me, I was like, I got to a point where I was like, maybe I'm crazy.

Brandy Schantz (06:23.886)
you

Helen P (06:42.727)
Maybe I like maybe maybe I'm wrong. Like maybe I am because they just they insisted just repeatedly that it couldn't be this bad. Yeah.

Brandy Schantz (06:42.872)
Right?

Brandy Schantz (06:51.438)
And Helen, that's a normal, that is a normal response, Helen. I felt crazy too. And I realized after some time and for everybody listening, you feel crazy? You're normal. We all feel crazy. We all think it's us. After a while, we think, nope, nope, can't be. But that's the point, isn't it?

Helen P (07:10.555)
It is. It is the point. it's this, you know, I think that one of the things that we have started to realize in medicine, and I say this as a medical provider now, as a nurse practitioner, I work with neuro patients. You know, we're starting to realize through, you know, through social media, through this sort of globalized world that we have now where everybody's connected with and connected to everyone else and we have.

such better access to information and experiences, we're learning that maybe some of the things that we once thought were really, really rare really aren't as rare as we thought that they were. And with the spread of medical information, patients are better informed, so they're getting more accurate diagnoses, and we have better testing and all of these kinds of things. But there is still a train of thought out there that...

you know, that patients can't possibly, you know, know or advocate or understand these things. They're not medically trained. You know, there's still a lot of providers out there who for whatever reason are really afflicted by their biases. Whether that bias is towards veterans who they think are faking or malingering or towards family members that they think are over-reporting, you know, like whatever it is.

Brandy Schantz (08:11.778)
Mm-hmm.

Helen P (08:25.181)
providers are affected by bias, right? And everyone, regardless of how much we wanna think about it or acknowledge it, like we all have bias, we try not to, but some more than others. But we know that bias exists and especially in healthcare. And unfortunately with providers, one of the things that happens is a provider will get a referral for a patient and they'll sort of read it over and they'll go, I know what this is.

Brandy Schantz (08:37.165)
Right?

Helen P (08:53.873)
And maybe that referral didn't have all the information. Maybe it didn't have an accurate history. Maybe it was incomplete. And so a patient goes in to see that provider and that provider has already made up their mind that this is what it is. It's this. It's this thing. And then the patient's left being like, but, but, but, what about all these other things? I actually kind of don't think it's this thing. I think it's something else. And so so many patients end up in that position.

Brandy Schantz (09:09.838)
Mm-hmm.

Helen P (09:23.377)
where they're left trying to convince their provider that there's something wrong when the provider has already decided that there isn't something wrong or that it's this other thing. And so it creates this turmoil. It creates this gaslighting, right? Of patients who are like, there's something wrong with me. And they're like, no, there's not. And so it becomes really challenging, especially if you're not medically trained on like, how do you advocate for yourself? How do you

Brandy Schantz (09:32.525)
Right.

Helen P (09:50.442)
how do you ask the right questions in the right way to get someone kind of out of their bias to realize that there's something wrong? And that is a hard thing to do. And it's, you know, I went through that with Matt. I went through, like, first of all, you know, like I even went so far as like to call like, you know,

Brandy Schantz (10:03.969)
It is.

Helen P (10:17.647)
experts at the Defense Veterans Brain Institute, the DBBIC, and was like, am I crazy? Like head injuries cause seizures. And I finally talked to somebody who was like, Helen, you are not crazy. Like, yes, this is like you are, you are correct. And here's what you need to do. And so, so that's kind of what I want to share with people is like, how do you like when you start to recognize that something's wrong and your providers are not listening to you.

Brandy Schantz (10:29.998)
Mm-hmm.

Helen P (10:46.215)
you know, there's a lot, you know, the first thing people do is they Google, right? They Google and they start researching and they start coming up with all of these, you know, all of this list of things. And that's not a bad thing. That's called a differential. That's what we call it on the healthcare side. When as a provider, we're interviewing a patient, we're getting all of our diagnostics together and we're coming up with a list of possibilities of what we think it is.

Brandy Schantz (10:50.19)
Mm-hmm.

Helen P (11:12.773)
And so I actually think that that's a really smart thing for patients to do and for people to do is to start researching your symptoms and researching what you think is going on to see if you can come up with terminology to be able to point your team in the right direction. Where I think people need to be really careful is where they're getting their information from. Right now, you know, if you Google, the first thing that comes up on Google is an AI answer and

Brandy Schantz (11:33.836)
Right.

Helen P (11:42.17)
I can tell you from personal experience that AI answers from a medical perspective are frequently wrong and inaccurate. And so much so that I actually had, had been Googling something about partial focal seizures and looking for some other specific statistics on partial focal seizures. And the Google AI answer that came up was children frequently have partial focal seizures, but they're of no medical concern and should not worry a patient. And I was like,

Brandy Schantz (12:08.612)
wow. Mmm. No.

Helen P (12:10.949)
screaming like I like reported it to Google to be like please take this down immediately because like partial focal seizures in a child are actually incredibly incredibly debilitating and are very concerning and like should immediately get neurology referral for testing and intervention and medication it can it can really impair their development so I say that so that people can be very wary of things like chat GBT and Google AI answers or

rock or like whatever AI entity they're using because they're not getting verified. You know, if you want to use that as a starting point to like, what are some, what are the top five most diagnosed, you know, conditions for, for GI or for heart conditions? You know, if you want to use it as a starting point, that's fine. But just like with everything else, you need to use verified sources. And so

Brandy Schantz (12:42.382)
Hmm.

Helen P (13:04.521)
You know, looking at things like Mayo Clinic, looking at resources like the NHS. The NHS actually has the National Health System for the UK. So it's going to be NHS.UK.gov, I think is what it is. The NHS education materials that they have out there are actually really good. And in some cases, they're a lot more informative than what like US based education materials are for patients. So I have found them to be a very, very good, very reliable resource.

You can do a lot of research through universities and institutions. And so that should give you sort of like a general starting point of like how to start, you you can look at it by symptoms. And the other thing you can do for a lot of patients, they don't always know that there's like terminology to the types of symptoms that they're having. And so that can also frequently cause struggles because they're

Brandy Schantz (13:56.045)
Right.

Helen P (14:01.831)
trying to explain something to their provider and their provider is just not getting it. But if they would have used the right terminology, it just helps their provider be like, okay, like I know what you're talking about.

Brandy Schantz (14:14.21)
Or even to be more descriptive maybe, what do you think? Because I'm thinking specifically of when I started having my issue, I kept saying, I feel like I'm in overtraining syndrome, but I can't be because rest is not helping. And every doctor looked at me and said, what is overtraining syndrome? Which is also a good reason to introduce exercise science into medicine. But we kept speaking past each other. So maybe just being more specific.

Helen P (14:29.576)
Yeah, yeah.

Helen P (14:34.642)
Yeah.

Helen P (14:40.169)
Right. But if you would have just said, if yeah, if you would have said I'm having excessive amounts of fatigue, I have elevated heart rates, but I'm not recovering with rest. Right. Like then they can, you know, it's sometimes it's just describing the things or like I had a I had a vision thing happen. I ended up with ocular migraines, which is like a rare form of migraines. But I basically had a very specific region of my vision. I went blind in for like 30 minutes.

Brandy Schantz (15:00.152)
Mm-hmm.

Helen P (15:08.437)
And it was very specific. I was trying to discuss with another provider that afterwards I was having this visual change where everything that I was seeing was sort of dragging behind. I was like, it's weird and I don't know what to call it. And he was like, yeah, it's called trailing. And I was like, I had no idea that that was a thing, that that was like what you called it. But yeah, I guess that makes sense, right?

And so sometimes if you can just do enough research into the symptoms to kind of pin down and look through the descriptions and things like that, it'll kind of help you get some of the terminology. And then sometimes that terminology can even lead you to looking up, what causes, you know, what causes these things, which can then lead you to like better understanding of the diagnostic. So the thing for patients and advocates and families to know is like write down

this list of differentials, right? Like, you know, I've been having this pain in my leg. I've looked up all sorts of things. You know, I've read that it could be anything from a muscle cramp to rhabdomyolysis, you know, and I'm concerned because and like physically write that thing out so that you have a very sort of concrete statement to give to providers. A lot of times these providers are like they've got like 10 minutes.

Brandy Schantz (16:33.944)
Moving. Yes.

Helen P (16:34.621)
They're coming, they're going, right? They're just trying to be efficient.

Brandy Schantz (16:38.21)
Yeah, writing things down has been probably the number one thing that's helped me because if I don't, I'm gonna, you get in there and it's almost like you panic and you're like, crap, crap, crap. And they've got 10 minutes and then they're out the door. And by the time you remember everything, it's the appointment.

Helen P (16:41.458)
Yes.

Helen P (16:45.63)
Yeah.

Helen P (16:51.185)
It's done. The other thing I would say along the lines of write everything down is keep a journal of all your symptoms. we started keeping, originally when Matt was having seizures, I had a seizure log. And then when he was having symptoms that I thought were seizures, but I couldn't really confirm, I started adding those kinds of events into it. So I could very specifically say, well, last week he had seven events that I thought were seizure related.

Brandy Schantz (16:56.16)
Yeah. Yes.

Helen P (17:18.921)
that were not typical for the way that he usually presents. Date it, time it, be as specific as you possibly can be. Even if you're not having symptoms in a given day, still write, like had a good day, didn't have any problems, just keep a daily log so that you can show your providers. Because the other thing is,

One of the most common things that I have heard patients gaslighted with is for things like weight gain, fatigue. When your symptoms are very vague, there's always a tendency for providers to be like, you're not getting enough sleep. Your diet is bad. You're having too much caffeine. You're not exercising enough. You're not whatever, right?

Brandy Schantz (17:52.482)
Right, yep.

Brandy Schantz (18:10.018)
Yes.

Helen P (18:10.929)
When you have a journal where you're like, well, in the last month, I averaged actually 10 hours of sleep a night because I'm exhausted and I go to bed all the time and go to bed super early. And, you know, I have a diet log in there and you know, you can see what I've been eating. It's not terrible. And you can see that I've still been going out for walks and I've been doing so when you have these.

these logs and these journal entries, it's like tangible evidence that you can give to them to say like, no, stop gaslighting me. Like I am coming to you and telling you.

Brandy Schantz (18:33.144)
Yes.

Brandy Schantz (18:42.144)
And with the technology we have today, we can do it. Now, of course, when I started having so many issues, for what at the time, it really, you know, we're starting to know more about it today, mostly because COVID created a whole lot of people with POTS and dysautonomia. So now doctors are a little bit more familiar with what I'm going through. But when I first started going to the doctor, they had no idea. And they just thought it sounded ridiculous that this alleged runner, you know, just

Helen P (18:58.718)
Great.

Helen P (19:10.504)
Yeah.

Brandy Schantz (19:11.086)
suddenly had a heart rate just run up to 180. But I have my Garmin watch. of course, so many of us have your Garmin watch or Apple watch or so many great trackers out there. I came in and I was able to bring in charts and say, okay, now let's take a look at what my runs look like in January of 2020.

Helen P (19:16.531)
Mm-hmm.

Helen P (19:28.158)
Yeah.

Brandy Schantz (19:33.176)
Let's take a look at what it looked like in February 2020 when my symptoms started and let's take a look today. And they were able to look at all of this information and say, my God, there's something wrong. Okay, so now we're getting somewhere. But it was because I was able to bring that proof in, say, look at this.

Helen P (19:37.705)
Yeah.

Helen P (19:42.525)
Yeah. Yeah, same.

Yeah, yeah, I mean even even things as simple as Fitbits, know, they will do sleep tracking at night and it just gives you tangible evidence to bring to them to say, look, it's not it's not one of those things, right? Or maybe, hey, like maybe you're right. Maybe it is one of those things. You're right. My sleep is bad. Then I should get a sleep study. Right. Like what do we do for, you know, people who sleep poorly? What do we do? Maybe I need to see a dietician. Maybe I'm not eating right. Maybe I do have food allergies. We should send me to an allergist for food allergy testing.

Brandy Schantz (19:51.597)
Yeah.

Brandy Schantz (19:59.149)
Yeah.

Brandy Schantz (20:06.189)
Yes.

Helen P (20:17.129)
You know, but it helps give it helps direct providers and and you know sort of start people on the right track the other

Brandy Schantz (20:25.388)
And that's a great point also for the kind of plugging some of the great tools out there for a quick minute. In addition, MyFitnessPal app, Lose It app, I know there's a few others. If you just keep logging in everything that you eat and drink on there, either one, you're gonna see something yourself and say, I didn't realize I was always snacking at 7 p.m. or, I do have three glasses of wine pretty often. Or when you bring that into your doctor, again,

Helen P (20:40.701)
Yeah.

Helen P (20:46.269)
Great.

Helen P (20:51.432)
Right.

Brandy Schantz (20:55.02)
Maybe the doctor will see something like, you know what, you're having a lot of these symptoms and it looks like you have bread and pasta a lot. Let's take a look at celiac disease. Or maybe the doctor will say, if this is what you're eating, there really is no reason you should be gaining weight. So again, just kind of to emphasize those tools help.

Helen P (21:02.355)
Great.

Helen P (21:06.887)
Right. And it doesn't all, you know, it...

It doesn't have to be anything fancy. know, Matt's seizure log, it's like sitting right in front of me. I've just been writing in it. It's a notebook on my desk and I just have the dates on it. And every morning when I come in and I sit in my desk, I jot down what his headache was, any, you know, any seizure activity we had, any abnormalities that was during the day, anything unusual that stuck out. And I just keep little notes and then I can flip back like, you wanted to know how he did on.

Brandy Schantz (21:13.837)
Yeah.

Brandy Schantz (21:28.174)
Mm-hmm.

Helen P (21:39.176)
you know, November 11th of last year, he had a seizure, like, you know, and I can just pull it up and reference it. So it just, helps you to give providers. The other thing is you can ask for those things to be scanned into your medical record. You know, if you're going to do that, make sure that you get a copy that your provider can keep. Cause a lot of times if you ask them,

Brandy Schantz (21:46.574)
Mm-hmm.

Brandy Schantz (21:53.838)
Mm-hmm.

Helen P (22:00.254)
to scan it in, they'll go make a copy somewhere, but it may not necessarily actually get where it needs to be. But you can ask them to put it on your chart of like, hey, I'm concerned. I'd like to have this scanned in to my medical record to show the number of headaches I've been having or whatever these symptoms have been.

Brandy Schantz (22:11.202)
Yeah, absolutely.

Brandy Schantz (22:17.162)
If you are already registered with VA, there is now a function in My HealtheVet where you can scan and upload your personal health data. So to your point, yeah, absolutely.

Helen P (22:30.141)
Yeah, yeah, and you can also just message it to them. You can send it. That's been the other thing people should know about the VA is they have three different systems that hold outpatient records. And so depending on how you're sending documents is it may end up in different portions and they may not know to look at the different systems to see where it goes. And so if you send it via like MyHealthyVet through like a portal message to your provider,

Brandy Schantz (22:34.093)
Yes.

Brandy Schantz (22:51.106)
Yes.

Helen P (22:58.267)
then it's like an easy thing because you can say, hey, like I actually sent this to my PCM on this day at this time. The message was read and it had the attachment in it that included this information. And that's always a great way, especially on VA advocacy, to hold them kind of accountable is to say, no, no, no, we can see on my healthy vet when these messages are read and replied to.

Brandy Schantz (23:19.726)
And they can also see that on most, know Walter Reed, well, the entire military health system now has MS Genesis. was MHS Genesis, Genesis, you know what I'm talking about. I was seeing my dysautonomia doctor and I always read through the notes after each and every visit. I go in, I check, I read through MHS Genesis and I went in and he had some incorrect information. I mean, everybody's human, right? I mean, and there's a lot of stuff that's happened in my life and in my daily life.

Helen P (23:26.929)
Yeah, MHS, yeah.

Brandy Schantz (23:49.706)
You know, I'm kind of a complex health case over here. So understandable, but I put into the message system, I said, hey, doc, there's some incorrect information here. Can you please correct my medical records to reflect the fact that this has been happening for X number of years, not what you put, and that I already had this diagnosis in 2024. And he did. He apologized. He said, sorry, I made a mistake. Let me go back.

Helen P (23:52.894)
Yeah.

Helen P (24:06.451)
Yeah.

Helen P (24:13.212)
Yeah.

Brandy Schantz (24:16.194)
But that is very important because you need to ensure that your medical records are correct and up to date. And nobody's going to do it but you. There's no nurse who's going to come in afterwards and say, hey, doc, I just read through the notes and I think you may have made a mistake. yeah, going back, read through the notes too and put that into that portal so that it is notated. Because when someone is reviewing your medical records, and this is especially a big, know, stomp the foot moment for everybody who's currently active duty or transitioning,

Helen P (24:24.233)
true.

Helen P (24:32.712)
Right.

Brandy Schantz (24:46.132)
You want that stuff in your medical record to be correct because otherwise you're going to start running into the people who are like, but do you have this problem? And now you're fighting for something that you know that you have and you don't want to have to do that.

Helen P (24:54.023)
Yeah.

Helen P (24:57.949)
Yeah. Well, and even after hospitalizations, it's the same way. You know, when we when we admit patients into the hospital, I predominantly work inpatient. You know, we we do a history. We do like an HPI, the history of the presenting illness, which is like the little story at the beginning of our note that's like, you know, 65 year old male brought to the emergency department after a fall with subsequent traumatic injuries to the lower extremities and loss of consciousness. Right. But.

Brandy Schantz (25:02.7)
Mm-hmm.

Helen P (25:25.881)
if you are someone who fell because they syncopized because they were having chest pain and and you know all and that chest pain has been ongoing for for weeks or you know whatever it is those might be in really important details for people to know and it may just not make it into the inpatient notes and so you just want to make sure that you're reviewing those things to make sure that you know it is being documented correctly. There's a guy that I work with who's

Brandy Schantz (25:31.79)
Mm-hmm.

Helen P (25:55.402)
we sort of poke fun at sometimes because he writes these novellas of notes. I mean, they're very extensive when he puts in the HPI for patients. However, there have been so many times where we have needed to figure out the backstory of what happened with the patient. And the first thing we look for is one of his notes because he's so thorough. And it's honestly, being extra thorough has never hurt a patient.

Brandy Schantz (26:00.846)
You

Brandy Schantz (26:25.111)
No.

Helen P (26:25.181)
but being vague really has. And so, you know, giving those extra details and you can even ask your, you know, if you're inpatient, you can ask your providers like, Hey, I really, if you could, when you write his note today or her note today, if you could include the fact that X, Y, and Z was happening or that we've been seen for this diagnosis in the past, it would really help us in the future as we're coordinating care. And it doesn't have to be an accusatory thing. You know, a lot of times providers are, they're just busy. They're trying to get things done.

Brandy Schantz (26:40.974)
Mm-hmm.

Brandy Schantz (26:52.472)
Yeah.

Helen P (26:53.779)
The other thing is a lot of them are using dictation services like dragon dictation or whatever service comes. And listen, the number of times that I am saying, esophageal varices and it's writing, esophageal variants and like nobody knows what that is. it's, it's, have to go through and kind of read it to make sure, because they're not always, they don't always have the time to do those things.

Brandy Schantz (26:58.349)
Yes.

Brandy Schantz (27:11.267)
Right.

Brandy Schantz (27:18.286)
All

Helen P (27:18.469)
If a provider absolutely refuses to do that, the only thing you can ask is for the nurses to do it. Say, hey, like, you you're the nurse on shift today. Would you mind writing a clinical note that we've discussed with you this history and that we think it's really pertinent to have in the medical record? And nine times out of 10 nurses will be like, yeah, yeah, that's fine with me. Like they'll per the patient, you know, has concerns about X, Y, Z. You know, they'll write a nice clinical note that goes in there. But just so that it's in there, because you're right.

Brandy Schantz (27:23.502)
Mm-hmm.

Brandy Schantz (27:37.662)
yeah.

Helen P (27:45.45)
You know, that's been one of the things that we've experienced with Matt's injury is they'll get the number of seizures wrong. They'll get the types of seizures wrong. And to be honest with you, even for us, one of the things that really affected us was Matt has what's called a bi-temporal epilepsy, which means that he has epilepsy that comes from both sides of his brain. We actually didn't know that for like eight years because I had not actually gone through and found the specific diagnostic report.

to see what it said. I knew what the provider had told me, which was that, you know, they said it was right-sided dominant epilepsy and it never occurred to me to say, well, was there any activity on the left? And years later we found out like, no, no, no, no, he doesn't just have right temporal epilepsy. He has bittemporal epilepsy, which is even more rare than, you know, the original thing that he had, which leads me into the kind of my next advocacy point is,

Brandy Schantz (28:27.777)
Right.

Brandy Schantz (28:38.989)
Yeah.

Helen P (28:44.753)
Not only should you be reviewing all of your records and all of the notes that get put in, always review your diagnostic reports. So if you have imaging done, if you have lab work that's done, your lab work is not usually going to come with an interpretation except in the case of pathology reports. So your pathology reports will come with a pathologist's designation of like what the tissue sample was. You may not always understand what those words mean,

Brandy Schantz (29:05.742)
Mm-hmm.

Helen P (29:14.697)
But just chop them, put them right into Google and see what Google answer gives you if you don't understand the full terminology. Because they're not always going to use terms like for pathology things like malignant or benign. Many times they will, but other times they might say it's dysplastic or mildly dysplastic or atypical. And so you just want to make sure that you fully understand all of the words in those reports.

Brandy Schantz (29:39.714)
Mm-hmm.

Helen P (29:41.7)
But for your other kind of radiology reports, your MRIs, your CT scans, those x-rays, those are things where you're really going to want to read the full report that comes from the radiologist. Because many times on those reports, we have what's called incidental findings. And your provider may not address, your nephrologist is not likely to talk to you about the intestinal wall thickening that you have.

Brandy Schantz (30:05.134)
Yes.

Helen P (30:11.517)
They might, they might bring it up, hey, we noticed there was some intestinal wall thickening on your last CT scan. You know, we're going to, you know, we need to work with your PCM to get you referred to GI, but a lot of times they won't because it doesn't, it doesn't apply to them and it's not specific to the thing you're being treated for with them. And a lot of times they assume that you're aware that somebody told you or that your PCM saw it and told you.

Brandy Schantz (30:29.208)
Right.

Brandy Schantz (30:33.922)
Mm-hmm.

Helen P (30:37.557)
And that is like simply not the case anymore. Just because you know the way that hospitals and doctors offices and the VA and health systems are being run, they're overworked and understaffed and frequently these are things that get missed. And so that is why you always want to read the full report and see if there were any incidental findings in there. See if there's anything else that was seen that you need to follow up on. And a lot of times it'll tell you if it recommends other testing, if it recommends other diagnostics.

If it recommends further serial exams, it'll tell you in there. And so you just want to make sure that you're looking at those because the number of times that we have, Matt's brain scans where we looked at MRI reports and they said, it's normal. And then I go and pull it up and I'm like, this is not normal. He had these lesions that he didn't have before, or now he has this, which he never had before. So it's so critical for you to know

Brandy Schantz (31:11.886)
Mm-hmm.

Brandy Schantz (31:32.13)
Right?

Helen P (31:35.582)
what those reports are saying. Lab work is a little trickier because, you know, blood work is one of those things where sometimes little changes are big things and other times little changes mean nothing. Other times it's very normal for people to have abnormal blood work depending on the sample and how it was collected in the time of day. Other times there's not a normal range, but generally most of the apps that you get now will sort of tell you what normal is. It'll have like a little green zone and it'll give you the dot where your lab is. And you can just kind of scroll through and look.

Brandy Schantz (32:01.837)
Yes.

Helen P (32:05.725)
And the same thing applies, right? You can always Google what those things mean. If you're somebody who's been having lots of chronic issues with fatigue and all these kinds of things, and they do a CBC, which is a complete blood count, and your white blood cell count comes back high, that's something you would want to look up to know, like, that's an indication of infection. okay, maybe I have an infection somewhere, right? And then you want to follow up with your provider to say, like, hey, I noticed this thing. What, you know.

Brandy Schantz (32:25.422)
Mm-hmm.

Helen P (32:31.207)
What does this, does this mean something? Is this something I should be concerned about? Do we need more follow-up? And just keeping an eye on those things to know, right? And add it to your journal, right? Like on this date at this time, my labs came back weird. My MRI showed that I had, you know, weird lesions on my brain or, you know, that I had, you know, abnormal signaling in the muscle or in the tissues or whatever it was, right? You just keep that in your log.

Brandy Schantz (32:41.484)
Yeah.

Helen P (33:00.007)
So that that way, when the time comes for you to advocate and to say, like, to put the big picture together, you can be like, hey, listen, I've been having these symptoms for this long, this often. I've had these abnormal tests, which were done on this date at this time at this place. And you can give them like this whole collective picture so that they're not having to like because that's the hardest thing in the world is a lot of these providers just don't have the time, the resources or the energy to go digging through it. And so then they're like trying to help you.

Brandy Schantz (33:25.059)
Yes.

Helen P (33:30.227)
but they don't have everything they need. And so it sets everybody up for failure.

Brandy Schantz (33:36.342)
It makes it so much easier when you do that too. I have started doing that myself. Instead of coming in with this big giant story to tell, I do a timeline and I highlight the big important points. This is when the symptoms first began. Here was my first MRI. This was my first time fainting. This was my first time getting my heart rate over 180 without doing a darn thing. And having that timeline and handing it over helps us get right to what we need to get to every time.

Helen P (33:55.176)
Yeah.

Helen P (33:58.655)
Yeah.

Helen P (34:05.959)
Right. And then the other thing is, you know, for providers who maybe don't have enough time in their appointment, it gives them time to go and look at things, you know, maybe after your appointment time has passed and they want to re-review things, you know, it creates more opportunity for communication.

Brandy Schantz (34:06.154)
It really does.

Brandy Schantz (34:16.611)
Yeah.

Helen P (34:21.897)
The other thing we would definitely say has happened to us is that we just run into outright gaslighting. You know, we run into providers. I give them I tell them in clinical speak because a lot of times I'll be like, hey, listen, I'm an NP. I work in neuro critical care. Like I do critical care stuff all the time. Let me just let me just present him as a patient to you, not in patient speak, but in like provider speak. And like, let's just like cut through it. Right. Some people appreciate that. Many others do not.

Brandy Schantz (34:28.088)
Yes.

Helen P (34:52.169)
But we have definitely had it where we've just had providers just be like, I don't think this is anything. And I'm like, really? Okay. But there are a couple of key questions that I think people can ask that I think will help really kind of elucidate and like figure out whether this is someone, because there are definitely times where I tell patients, I'm like, find a new provider. If they are not an advocate for you,

Brandy Schantz (35:17.858)
Yes.

Helen P (35:20.261)
then you need to leave and you need to find somebody who is somebody who's going to do the work to figure out what's going on, right? Because everybody deserves that, right? And so one of the questions you could ask and the way you can phrase it instead of just getting, you know, because I think I think the tendency for all of us is that we get frustrated and we get angry and then we're like, what do you mean? It's not concerning that I'm throwing up blood, you know, like, right.

Brandy Schantz (35:41.016)
Yes.

Helen P (35:48.454)
And we just we hit that point because for so many people we're dealing with this thing every day. You're tired. You're frustrated. You feel you feel like you're just like again like you're crazy because this thing is happening and nobody is listening. Right. And so you're already on edge going into these appointments. So one of the things you can ask is you know I've expressed to you that I've been having these symptoms list out what those symptoms are and then say and I've heard you say

Brandy Schantz (35:54.723)
Yes.

Helen P (36:16.979)
that you're not concerned about it being this diagnosis because what symptoms should I be on the lookout for? What symptoms would make you concerned? And hear what they have to say, right? Because if that provider cannot verbalize to you, well, actually, really what I'm looking for is, you know, for them to have repeated marching absence spells. You know, it's very, it's very, you know, not typical for patients to only have one

Brandy Schantz (36:32.782)
Mm-hmm.

Helen P (36:46.543)
know, partial focal generally they'll have multiples in a row and it sort of marches out and repeats itself, right? If they cannot verbalize to you, like whatever it is about the symptomology that you're experiencing that is the thing that they're actually looking for to be concerned. If they say something like, there's nothing for you to worry about, why do you keep asking me these questions? like, there's no symptoms, right? Like, whatever they, like, depending on how they respond will really guide you in knowing

whether that provider is worth your time to keep following up with, or whether you just need to find somebody to move on. And it helps because the other thing that it can do to providers is it can kind of force them to look at their own list of pertinent positives and pertinent negatives, which is what we call it when we're looking at these differential diagnoses.

Brandy Schantz (37:21.57)
Move on. Yeah.

Brandy Schantz (37:35.374)
you

Helen P (37:40.51)
And it can help them kind of go through that list and, you you did tell me that you were having unusual bowel patterns and you did tell me that you were having, you know, episodes of vomiting that you thought might've been blood-tinged. And you did tell me that you were having, you know, epigastric pain that was worse after eating. And you did tell me that you, right, and it can sometimes force them to kind of recount these things in a more, you know, kind of conclusive list that makes them go, you know, I tell you what, why don't we just put you in for an EGD?

And we can just do, can look and see if there's any abnormalities and make sure that you don't have an ulcer or whatever. so asking them, what are the symptoms that you would be concerned about? What would happen, what would make you be concerned? I think is an excellent question that patients can ask. Another way to phrase it is what should I be looking for if I'm concerned about X, and Z?

Brandy Schantz (38:16.974)
Right.

Brandy Schantz (38:38.266)
That's great advice, yeah.

Helen P (38:39.687)
Yeah, it just, you know, and it helps people. And I think also, you know, again, going back to that journal, when you get the answer to that question, write that information into your notes, right? You know, saw a doctor so-and-so on this day who said that I should be looking for these symptoms. I have those symptoms. I don't have those symptoms. You know, whatever it is so that then you kind of, you can kind of direct yourself. know. if it, you know, if it does come to the point of needing to find

a second opinion, absolutely patients should get a second opinion. You know, I think.

Brandy Schantz (39:15.438)
Absolutely. Well, and I think it's a good, something from the non-medical world over here that just shocked the heck out of me to learn as I've been going through this. Most healthy non-medical people think that you walk into a doctor's office, they run tests, and voila, there is an obvious diagnosis. So it took me some time, but after going to see these doctors over and over again, I quickly realized

They're analysts. They're analysts. Now, what makes the healthcare system so unique anywhere else you go, if you're speaking to a financial analyst, maybe you're talking to an intelligence analyst in the army, maybe you're speaking with somebody who analyzes the water in your system, they're going to generally follow the same pattern, right? They're gonna present the facts, whatever came from that test or their observations or what you've told them.

or a series of all three of those things, they're going to put that into an analysis and then give you possible outcomes. Or if there's something definitive like, we just found a lot of mold in your house, well, then there's the analysis. We found mold. they just found a cancerous tumor in your body, well, they're going to say, we found a tumor. We need to do something. Here's the steps. But for most things in health care, there are different possibilities.

Helen P (40:25.875)
Great.

Helen P (40:34.323)
Right.

Brandy Schantz (40:43.65)
and different courses of action. And what I found very interesting about healthcare is they most, the overwhelming majority as matter of fact, doctors don't present it that way. They take a look at the facts. They don't really go over them with you. And they say, this is what I think. And then that's, it's over. That's it. Well, I didn't ask, you know, your opinion. I asked you to give me what, I mean, again, every other professional in the world would say, okay, so here is what we know about these facts.

Helen P (41:00.509)
Yeah.

Helen P (41:08.221)
Yeah.

Brandy Schantz (41:12.258)
Here is what the majority of people think this could be. These are some other possibilities. This, this, this, and this leads me to believe it's more likely this than that. However, there's always a possibility it could be A, B, and C as well. Here are our courses of action. Let's discuss and decide which one is best for you. And that's how every other field in the world analyzes a piece of information and presents it to their client, their boss, whoever. In healthcare,

Helen P (41:22.803)
Yeah.

Helen P (41:32.222)
Yeah.

Helen P (41:39.357)
Yeah.

Brandy Schantz (41:41.548)
we get a doctor's opinion and it so often comes across, well, I think this, and then it's over. And of course, if any other job in the world, you'd be fired for doing something like that. But I think it's patience because we don't understand that so much of this is soft science based on hard science and it's an analysis. So we just say, well, he said he doesn't think it's anything, so I guess I'll just go home. Instead of saying, hold on, doc, I didn't ask what you think, I asked.

What are the possibilities? Now let's discuss what you found. Let's discuss what's out there. And let's discuss my potential courses of action. And then if they're still not willing to do that, move on. But I think the non-medical people need to understand so often you come in and you feel inferior or intimidated because, I'm not a doctor. I didn't study any kind of health care or any science at all or whatever you're feeling.

Helen P (42:10.419)
Great.

Helen P (42:19.303)
Move on. Yeah.

Helen P (42:31.176)
Right.

Brandy Schantz (42:34.902)
And when the doctor says that, you just kind of slink out with your head down and think, well, I guess I'm crazy then. Or maybe he's right. Maybe I'm just eating bad, and now I feel like I'm going to die. And what you really need to do are ask the questions that you have said and push back and say, you know what? I didn't ask your opinion. I want a professional analysis, and I would like a professional presentation, please.

Helen P (42:47.358)
Yeah.

Helen P (42:50.77)
Right.

Helen P (42:54.983)
Yeah. And I think there's, you know, we see that most in emergency medicine. If you if you actually get, you know, a lot of people also don't understand that there's a difference between a discharge summary and the actual notes that we're writing on patients in the hospital. We give you a discharge summary that's just like a list of information of like maybe it has your your your radiology results. You know, maybe it has your blood work in it.

Brandy Schantz (42:59.683)
Yes.

Helen P (43:18.823)
your final diagnosis, but it does not include what we call the differential. So the list of possible things, most of the the notes from emergency medicine will now include a list of differentials somewhere in their note because it's it's a requirement for billing and reimbursement and the way the systems have it. But you don't ever see that right because like, you know, and half the time the providers don't ever talk it over with you because a lot of people don't understand that that the practice.

Brandy Schantz (43:39.117)
Right.

Helen P (43:47.302)
of medicine, the reason that we call it that is because it is the practice of medicine and some people are very, very good at it and other people are very, bad at it. And, you know, I think that there's this assumption in medicine that everybody is in it for altruistic reasons and because they want what's best for the patients and they want, you know, they want to do good by humanity and that is not always the case. There are lots of people out there who work in medicine because

Brandy Schantz (43:55.192)
Yes.

Brandy Schantz (44:09.998)
Right?

Helen P (44:13.799)
a lot of different reasons that are not altruistic, right? Whether it's money or whether it's whatever. But to make sure that you find a provider who actually cares about helping you get to the bottom of it. And the thing is, you know, sometimes there are definitely times where I've had patients come to me and they are not right about what is going on with them. I have had some people bring me some like very far, very far

Brandy Schantz (44:37.109)
Hahaha.

Helen P (44:43.225)
like far left field where I'm like, wow, that is not what I thought you were going to tell me you thought was wrong. But generally speaking, I will say that the vast majority of the patients that I have had come to me and tell me that something is wrong and that they've thought it was X, Y and Z, a lot of them have been right or they've been close to right. And they've at least helped me as a provider get on the right page for like getting them an answer or solution or treatment. I will also say that

Brandy Schantz (44:49.186)
Right.

Helen P (45:13.449)
especially for it, this is especially true with neuro patients, the neuro community, and I don't know why it's like this, but we have a tendency to negate and to dismiss the observations of family. And I will say that that's true for elderly patients, especially with things like Alzheimer's and dementia. that's true for our young TBI patients, like my husband. that's true for

Brandy Schantz (45:32.812)
Mm-hmm. Yes.

Helen P (45:43.114)
for pediatric neuro patients that they tend to, for whatever reason, the caregivers tend to be dismissed. And that's true, honestly, for all, you know, caregiving situations where you have a caregiver who's really doing the majority of the work for an individual, know, PTSD, you mental health issues, all those things. And don't let them dismiss you. You know, I can remember, I had a patient who,

Brandy Schantz (46:05.742)
Mm-hmm.

Helen P (46:10.183)
He had a very severe traumatic brain injury. He was not military, but he had a caregiver who was very, very involved. And she knew him better than any diagnostic could.

She could tell you when he was having a bad neurode, you know, in neuro we talk about good days and bad days because everybody thinks it's this like upward linear progression into recovery. And the truth is, is it's like this spiral of like one step forward, six steps backs, up, down, sideways, backwards, you know, all these things. And she could tell you when he was going to have a bad day. You know, they'd go in and they'd say, Hey, like we're going to do a little extra physical therapy today. And she'd be like, a good day. He's not, he's just not into it today. He's something's off. And she was right.

Brandy Schantz (46:34.819)
Right?

Helen P (46:52.335)
every time. Every time she would say that we would run blood work or do additional tests and she was right on the money. And you know truth be told like the same thing is true for like my husband. Like I stare at this man every day. Like every day I am with him. I can tell you when he's having...

Brandy Schantz (46:58.798)
spot on.

Brandy Schantz (47:05.485)
Yes.

Helen P (47:09.373)
more seizures, I can tell you when he is more anxious, I can tell you how he's going to respond to things because I am with him 24 seven, 365 for the last at this point, 11 years that we've been going through this after seizures. Like I can tell you, right? And so when we run into providers who are negating what I'm telling them as a caregiver, it is a huge red flag to me because I'm like, I am an

an expert in this man. 10 years, 10 years I'm standing here like, right? And similarly for patients who are not in caregiver situations but are just dealing with their own chronic illness, like you're an expert in your own body. You know when something's wrong, right? And so finding providers who will listen to you, who will be compassionate with you, who will help advocate for you is critical because there are so many times where

Brandy Schantz (47:36.098)
Yes.

Brandy Schantz (47:47.042)
Yes.

Helen P (48:01.116)
you know, patients will say little things that don't seem like big things to them, which to us as healthcare providers are like instant red flags, right? And so it's critical that you have that healthcare relationship. And if you don't find providers who will keep fighting until somebody listens. They are.

Brandy Schantz (48:18.464)
And you know what? They're out there. And one thing I've learned, and I feel very fortunate to have this access. I use Walter Reed frequently. I also use the VA hospital in DC frequently. Both of those hospitals are teaching hospitals. Both of those hospitals have many, many med school students in those hospitals. And I'm sure there's a lot of people listening right now who think a med student, what's a med student going to do for you?

Helen P (48:45.597)
They will spend a lot of time with you. Yeah.

Brandy Schantz (48:47.852)
They are the best to have in the room. Why? Number one, they're trying hard because they want to be good at their job. They want to learn. I have, and of course being the, you know, complex medical case over here, I have walked into a room and seen that young medical student sitting there and that medical student has said to me,

Helen P (48:55.827)
Yeah.

Brandy Schantz (49:09.28)
I spent all night reading over everything, making sure I understood. I went all the way back to this year and I saw this happen to you in 2006 in Afghanistan. And I'm like, wow. But that stuff is so helpful. And there is a big difference, I will say. Now, I can't tell you about the specifics. I don't know all of them. I have had some great guests who were very much experts on medical education. But I do know just as a patient.

Helen P (49:13.426)
Yeah.

Helen P (49:19.368)
Yeah.

Helen P (49:23.656)
Yeah.

Brandy Schantz (49:36.398)
There's a big difference between the folks who went to medical school in 1972 and the people who went to medical school in 2022. And I'm here to tell you, I have had some really great doctors who've been practicing for 40 plus years, but a lot of times I go in to see that neurologist who's been around for 40 plus years and I feel like I'm almost always gonna get dismissed. It's always gonna be something condescending and hey there little lady, I'm a neurologist, I know everything.

Helen P (49:42.141)
Yeah.

Helen P (50:00.393)
Yeah.

Brandy Schantz (50:05.634)
But when I see that guy, you walk in the room and you first think, my God, how old is this kid? Are you old enough to be here? And then they turn around and they listen to you and they treat you with respect. And they say things like, I don't know. And to me, that's the most important thing you can hear. When somebody says to me, I don't know, I don't think, I need somebody better, I think, thank you. Because there's so much out there we don't know. There's so much.

Helen P (50:12.145)
Yeah.

Helen P (50:22.664)
Yeah.

Helen P (50:27.613)
Yeah. Right.

Yeah.

Brandy Schantz (50:35.374)
10 years from now, we'll probably look back on my entire medical journey and think, how terrible. Thank goodness we know exactly what that is now and know how to treat it. But that's not what my experience was because there's so much we have to learn. And they understand that. So look for the young people.

Helen P (50:42.686)
Yeah.

Helen P (50:46.652)
Yeah!

Helen P (50:49.969)
Medicine changes, medicine changes so quickly. I mean, we're learning new things constantly. And the hard thing is, once you're out of school is you're not getting exposed to, hopefully your provider in whatever specialty goes to a conference and attends, they do their continuing medical education appropriately and they're looking at things that are actually relevant to their practice. A lot of times though.

Brandy Schantz (50:55.467)
daily.

Helen P (51:15.977)
And I don't mean this as a judgment of anyone. This is true of anyone in all fields, right? A lot of times they're not. A lot of times they're not. They're just doing what they have to do to get by. They're doing whatever's easiest. It's not necessarily the most pertinent to them. And they're just checking a box because they have a lot of other things and a lot of other responsibilities. And so when you're getting medical students or you can also, residents and interns can sometimes be the same way.

Brandy Schantz (51:21.038)
Yes

Helen P (51:41.066)
You know, frequently they are actually spending the time doing the research. They're involved in the research for those conditions. And so they're much more likely to be attentive to those things and less dismissive. The other thing is knowing where people fall, you know, in the spectrum of their training and understanding their training, you know.

You know, if you're at a teaching institution, which many hospitals are, you are going to come across students who are involved in your care, you know, and it is absolutely up to you as a patient whether you want them to be involved or not. I think that they bring a lot to the table. But there are a lot of people who will say, I don't want to I don't want a surgical resident who's in their first year to do my surgery. And it's like, OK, I, you know, I can understand that. I definitely don't want the guy who's like, you know, never placed a trocar before in an abdomen to, you know, be the one figuring it out.

but also understand they're not doing that alone. There's an attending surgeon who's right next to them, who's teaching them how to do these things. And so, you know, everybody has to learn and, you know, there's a reason to have nursing students involved or, you know, medical students involved or interns or nurse practitioner students or whoever, you know, to help them get those experiences. And also for you to be able to share your story of what you've been through, because I think it helps students learn about the goods and the bads.

Brandy Schantz (52:35.139)
right.

Helen P (53:00.945)
of medicine.

You know, I have definitely seen in my own clinical practice, you know, patients who have been gaslit into thinking that there is absolutely nothing wrong with them. And then they do have very severe, very significant things wrong with them. And, you know, I think that for a lot of providers, it's not intentional. think it's I think many of them are victims of broken systems that don't allow them to spend enough time with patients to have access to the right resources, to be able to give people

Brandy Schantz (53:12.3)
Mm-hmm.

Brandy Schantz (53:31.16)
Certainly.

Helen P (53:32.42)
you know, appropriate diagnostics. And so, you know, it's just important for patients, you know, if you're going through that, if you're going through something with your loved one where they're not getting the care that they need, where nobody's listening to you, like, it's a broken system. Like it's everywhere is short staffed, everywhere is under resourced and overworked. And it's very hard for these providers, especially with difficult cases.

Brandy Schantz (53:47.15)
it is.

Helen P (53:57.896)
you know, to take on more work than they already have because there's just not enough resources out there. And so I would say don't, you know...

Brandy Schantz (54:02.104)
Yeah.

Helen P (54:09.425)
The best way to advocate for yourself is from a calm, cool, collected point. There is the point gets made whether you're screaming at somebody versus whether you're saying, hey, I don't think this is sufficient care and I don't think this is in line with standard of care and I'm requesting X, Y and Z. That comes across a lot better than, you know, people screaming or threatening or these kinds of things. Right. And so, you know, I would just encourage people to like, I know it is so hard when you're in a moment

Brandy Schantz (54:24.366)
Mm-hmm.

Brandy Schantz (54:31.885)
Right.

Brandy Schantz (54:38.369)
It's difficult.

Helen P (54:39.429)
to take that breath and be like, know, okay, hold on. And you can even tell providers like, hey, I need a minute. I'm frustrated. I'm sorry that I'm coming across as, you know, combative or, you know, berating, but I'm frustrated. I just need a minute. I want to come back to this conversation so that I can continue to express to you and be with It's all in the plan.

Brandy Schantz (54:41.334)
Yeah, it's difficult.

Brandy Schantz (55:00.364)
or just tell them up front you're dealing with trauma. And I just recently started doing that and I realized how helpful it is to just set the expectation up front. Hi, I've been dealing with this for five years. I have worked very hard to drive my own diagnosis. After being told multiple times, it's probably just my PTSD. So I'm dealing with a lot of trauma. I'm very frustrated. I've lost my entire life as I once knew it. I'm trying to do my best here, but it's getting more and more difficult because I am dealing with that trauma. And usually people...

Helen P (55:17.192)
Right.

Helen P (55:27.273)
Right.

Brandy Schantz (55:28.802)
They get that. like, mean, you know, that is a lot of trauma. Okay. I get it.

Helen P (55:29.703)
Right. Yeah. Yeah. Just having that acknowledgement, I think, goes a long way for people. Also know that there are patient advocates out there. If you're in a situation for whatever reason where you can't change providers or you're inpatient and they're not, whatever is happening, especially in the VA system, they do have patient advocates, hunt them down.

Brandy Schantz (55:40.43)
Mm-hmm.

Helen P (55:53.0)
Make them do their job. It is their job. Even if you're not in a VA hospital, most other hospitals have a patient advocacy department or some form of department that works with patient relations or whatever it may be. There's some department where you can go to to be like, hey, I'm having a problem and I need your help fixing it. And utilize those resources. Know that those resources are out there for you.

Brandy Schantz (55:53.091)
Yes.

Brandy Schantz (56:13.198)
Mm-hmm.

Yes.

Helen P (56:19.561)
and to help you get answers to the things that you need. It is a difficult landscape for healthcare right now for everyone. And it is especially hard for patients who...

Brandy Schantz (56:28.972)
It is. is.

Helen P (56:35.785)
have chronic diseases, especially if you have rare chronic diseases, it's even harder. know, there are more specialists leaving the fields right now than are coming into the fields. That's true sort of universally. And so it's just getting harder and harder for people to access care. And the other sort of like tidbit I just want to put out there is if you are someone, if you are a loved one or, you know, if you're a caregiver, if you're a veteran, whoever, and you're dealing with a chronic issue.

Brandy Schantz (56:45.294)
Mm-hmm.

Helen P (57:03.985)
Please know and understand that the emergency department is probably the absolute worst place for you to get help and resources. And I mean that in the most loving way possible. If you have an emergency, a true life or death emergency, and you need to go to an ER, absolutely 100%, call 911.

Brandy Schantz (57:14.178)
Yes. Yes. Yes.

Helen P (57:26.749)
But if you are somebody living with a chronic condition, whether it's mental health, whether it's Crohn's disease, Alzheimer's, whatever it is, it does not matter. Have a plan with your provider on what to do in an emergency. If you have a flare, if you run out of medication, if you, like whatever it's gonna be, you need to have a plan.

that is not the emergency department because what happens is that patients who have these complex diagnoses come into the emergency department and they're sick, they're hurting, they're in crisis, they're having problems and they need intervention. And the emergency department is not staffed or prepared or knowledgeable to deal with those situations and you get set, you get triaged.

Brandy Schantz (58:05.358)
Mm-hmm.

Helen P (58:17.433)
And a lot of times these patients will get sit in a waiting room because they're not triaging as someone who's having

Brandy Schantz (58:17.923)
Yes.

Helen P (58:23.305)
you know, what the emergency department would consider a life threatening emergency. And a lot of people try to get away with it and they'll say, oh, I'm having chest pain. They think that that's like the magic words, but then they get further triaged and then they still get set in a chair. Right. And so, so all of these things happen and then, and then you're waiting to see a doctor and you get an emergency medicine, you know, or, a PA or a nurse practitioner who maybe knows absolutely nothing about your condition or your history or how complex it's been.

Brandy Schantz (58:50.286)
Mm-hmm.

Helen P (58:53.033)
And at the best, will get somebody who's like, hey, I want to try to help you get through this. At the worst, you're going to get somebody who says there's nothing wrong with you. You need to get out of here and you don't get any resources and you get a huge waste of time. You're frustrated like all of these things. Right. So if you are somebody who has, know, like my husband, for example, has a severe seizure disorder, his seizures we know about.

Brandy Schantz (59:02.936)
Yes.

Helen P (59:18.183)
There are very specific times where we need an emergency room for very specific medications. And I have a list of like, if then, if he has more than two seizures in a row that are not treated with his rescue medications that are past a certain time point, and we cannot get in touch with his neurologist, then we will call for emergency rescue medication, the emergency, you know, call for.

paramedics to come take him to the emergency department so that he can get an infusion of, you know, a rescue diazepam long term for treatment of status. Like we, we have like a very specific, we take our providers, our neurologists contact information with us. We ask the emergency team to call that provider to have a direct conversation, you know, specialist to specialist with them so they can know exactly like where we are as, you know, as patients and what they should and should not do.

We have it very, very specifically lined out. That is the kind of thing that patients need to have because unfortunately what happens is patients have, you know, they have, you know, a flare or they have complications or they run out of medications or, you know, something happens and a lot of times they'll call, you know, a PCM or they'll call somebody and they'll say, just go to the emergency room. And it's like, that doesn't help anyone.

Brandy Schantz (01:00:43.137)
Great.

Helen P (01:00:43.195)
Again, if it's an emergency, 100 % go, 100%. If you are life-limber eyesight, please take yourself to an emergency. But if it's not, then we need to be pushing back and saying, that is not appropriate. We need a case manager, we need to talk to the clinic, I need a call back from the doctor, like we need to know how to deal with this. And a lot of times if you ask your providers, hey, I'd like to come up with an emergency plan, you know, if especially, this is especially true for chronic pain patients.

Brandy Schantz (01:01:10.584)
Yes.

Helen P (01:01:11.749)
you know, hey, I want to come up with an emergency plan of what to do if I have, if I go into crisis, you know, if I'm, you know, if I'm, if I'm this way, what are the steps I should take at home before we look at seeking emergency care because of all of these things? And I think that that just helps set people up for success so much better than, I'll just go to the ER, that'll be all right. And it's like, like that's the worst possible place.

Brandy Schantz (01:01:34.125)
right.

Helen P (01:01:38.353)
you know, to go because we just don't have the resources or the time to give patients the attention that they need in these situations.

Brandy Schantz (01:01:45.902)
That's great advice. Thank you. We've gone through so much today. mean, what a great learning opportunity. There's still so much to learn. It's so hard to advocate for yourself, but having these kinds of tips and tricks do make the difference. So I really appreciate you going over all of this and just helping us to get a little bit more insight into the healthcare industry and how we can better navigate our lives and the lives of our loved ones who are going through.

chronic illness, emergency, kinds of things. So thank you again for being on the show. I'm looking forward to our next episode again. We're doing a really great special series, Veterans Medicine and the Mission Left Behind. This is some great information and I really appreciate all the work you're doing to help veterans each and every day.

Helen P (01:02:36.659)
Thank you so much. It's always fun to have these chats with you.

Brandy Schantz (01:02:41.922)
Yeah.