Episode 82: How To Be The Best Patient & Self Advocate | Hernia Talk Live Q&A

You can listen to this episode by clicking here.

Speaker 1 (00:00:01):

Hi everyone. Welcome to Hernia Talk, Live Q and A, our weekly session with me your host, Dr. Shirin Towfigh hernia and laparoscopic surgery specialist. Thank you for joining me on Facebook Live at Dr. Towfighand on Zoom. Any of you are here on Zoom and you’ll know that after this is done with today’s hour, I’ll make sure that you have access to this session on my YouTube channel. I’m super excited because we’re going to go a little bit different today. Many of you know that I have a lot of really amazing patients. Many of you are watching that are my patients, but Mackenzie Kimes is our guest panelist today. She is a nurse and she’s also patient. She lives in Arizona. You can follow her at the patient RN and she’s been chronicling her journey for some years on Instagram. So welcome. Thank you so much for joining me on this.

Speaker 2 (00:01:08):

Yes, thank you so much for having me. I am very excited to talk with you and hopefully shed some light on what it’s like to be on both sides of patient care as the patient and as the care provider.

Speaker 1 (00:01:21):

I love that you’re also a nurse because you can provide both aspects of what you’ve been going through. But you’re coming to us from Arizona. Yes. You work at Arizona State University?

Speaker 2 (00:01:34):

I do. I just graduated a year ago with my master’s in nursing education. So I do patient bedside care and also teach in the undergraduate program. So I’m teaching all the students who are in nursing school and kind of helping navigate through their program to hopefully shape them into safe, well-rounded nurses when they go out into the field.

Speaker 1 (00:01:56):

So what’s unique about you is you’ve also had medical issues. It’s very interesting when people in medical field also have medical or surgical problems. I’ve been there myself, I’ve had family members and you know get to kind of experience the get the patient experience and I asked you to join us as our first ever patient, mostly because I was personally very impressed by you. So as a background, everyone, Ms. Kines is a patient that reached out to me and she had a very complicated story and she sent me her list of these, what’s going on with me, maybe you could help me. And I love getting information because the more information you give me the better I can kind of analyze and help figure things out. But she had a Dropbox of all the different hospitals that have treated her since she was younger and within each of those folders were very nicely arranged.

Speaker 1 (00:03:05):

All the different studies she had and the reports that she had. It was so well done and very easy to navigate. Cause I’ve had people that bring me a whole notebook and notebooks are great too. This was just beyond, and I think that alone was one of the biggest reasons why at least I felt that I was able to help you because you provide me with information and insight and other do. And you’ve also been to really amazing people through your journey, different doctors of different specialties. But maybe we can just start by having you explain, I mean are you obsessive compulsive because I am a little bit or are you a organizer? I mean this is great. It’s something I would do, but my concern would be that it would turn people off. It turned me on. I thought it was great. But maybe you can explain to me when did you start chronicling your healthcare and organizing it so well and how has that been received?

Speaker 2 (00:04:17):

So my medical library, as I kind of like to call it, has definitely evolved over the years. Yeah, I started having health issues when I was a teenager, so it started when I was much younger, but I had multiple different complex things kind of going on simultaneously. So I was seeing multiple specialists at different doctors and every time I would go to a new appointment, the doctors would obviously ask about what I’ve done before, what tests I’ve had and things like that. And so before this, I had one of those notebooks that you were talking about. Once I got to the point where I had a four inch binder that was completely jam-packed with papers. Oh yeah. I realized that I needed to have a different way of doing things and I was getting to the point where I had been seeing doctor after doctor for so many years and I wasn’t getting the answers that I felt like I needed in order to get to where I wanted to be and in order to get healthy.

Speaker 2 (00:05:25):

And so that was probably about a year ago was when I was like, okay, this is my time. I need to take things into my own hands and I need to advocate for myself and in order to do that I need to give these doctors and I’m going to all the information that they could possibly need and I want it to be as efficient as possible because I know that you guys see many patients and time is sometimes an issue, especially with someone who has a lot of complex medical issues. And so I wanted to condense it and make it as organized as possible so then when I send it to providers you you’re able to navigate it really easily and find the information that you really need to see and hopefully be able to put those puzzle pieces together. It’s also really helpful for me because I’ve seen doctors from out of state and so it’s been really easy for me to get my medical records to them.

Speaker 2 (00:06:25):

So making an electronic file has been really helpful. And also I don’t have to lug around my 10 pound binder anymore. But I think that the reason that I wanted to really get organized and get really serious about getting to the bottom of my medical issues is just I had been seeing so many different providers and I feel like sometimes as a patient I wasn’t getting taken seriously. And as a nurse it’s kind of interesting because sometimes when I was seeing different care specialists, they really honored my nursing knowledge that I had. But other times I feel like it was kind of off-putting and it could have been a little perceived as a little bit intimidating to some of my providers because I questioned things. But that’s just because I was trying to advocate for myself and get what I needed. And so I think that this was just kind of a way for me to really feel like I was taking control of my situation and not being able to say, oh, what if I gave them this piece of information? What if that would’ve solved the puzzle? Or what if they were missing something? And so pretty much I was like, okay, it’s all or nothing. And so I was able to put it all together in order to get organized

Speaker 1 (00:07:48):

Because that’s how I feel. I feel like you don’t tell me stuff then what if that was the one clue that would’ve pointed me in a certain direction for you? And I have a lot of pages like, oh, I didn’t give you that because I didn’t think it was important. I’m like, but don’t, like you should not determine what you think is important because maybe it is important. Maybe that’s the whole reason why there’s this medical mystery is because that one clue that you thought was not important was actually important. That’s the whole reason why these are mysteries because you’re trying to solve it and the most clues you can get the better. I’ve had a couple patients where that one tidbit that they failed to mention was actually the right clue. I had a patient who no one can figure out why he had severe abdominal pain.

Speaker 1 (00:08:36):

No one can figure out why he ended up do. Pain was a young kid in his late teens, like 16, 17. And the only thing that made it better was he felt like he needed to sit in a hot tub of water. And that was the one detail I kept being told, kept being told. Well he didn’t tell us at the same time this happened. He started, he started smoking marijuana and it’s a very, very unknown side effect, but in some patients they adversely react to marijuana. It gives them severe abdominal pain and the only way they feel better is that they sit in a hot tub. Well, yeah,

Speaker 1 (00:09:15):

Yeah, yeah. So we solved that problem, but it was a detail that he didn’t feel comfortable saying it was, I think his mom was around so he didn’t want to admit to it. But little, I love problem solving. And the question I have for you is how many doctors do you see that solving these problems? I feel that a lot of our medical, I feel like our medical system is built around providing care, but when it gets to a point where, but so you have to see so many patients to be able to pay your bills or the hospital employs you and expects you to pay, see so many patients so that they can pay their bills. And so what ends up happening is a consultation is 15 minutes, maybe 30, 20 to 30 minutes. And there’s no way they can go through what you are going through. So people like you fall through the cracks and the doctors are frustrated, but some of ’em like it. They actually don’t want a patient like you to walk into their office. They prefer to get the simplest situations and that’s their personality and others are. So how many doctors did you, well let’s ask, let me ask you this. How did you find your doctors? Because you actually did see a lot of excellent doctors through your journey and try to figure out what’s wrong.

Speaker 2 (00:10:43):

Yes, like I said, my journey kind of started when I was in high school. And so at the time I was a pediatric patient, so I relied heavily on my parents to do research in order to get me to specialists. So I’m very thankful for them. They are the ones that kind of taught me how to advocate for myself and to pretty much put things in my own hands. I think that that’s sometimes something that patients forget is being a patient is kind of like a job. If you don’t put in the effort and you don’t put in the work for yourself, you’re not going to get the answers that you are hoping for. And I feel like especially talking about going back to what you said about the volumes as a patient, you have to understand, and this is something that I’ve kind of been able to see on the nursing side of things, these providers are seeing tons of patients a day.

Speaker 2 (00:11:42):

And so you’re not the only one that they’re focused on and that’s to know that’s a business and they have to do their job and they have to meet their quota. But like you said, it takes a lot of time. And so if you sit back and just wait for them to do something for you, it could take a really long time. And so being a patient’s hard work unfortunately, especially if you have a lot of complex medical problems. So I think that kind of understanding that, so once I got older to the point where I was an adult patient and I needed to speak up for myself and I needed to take things into my own hands, I did the research. I Google simple start with things and word of mouth. So I used different resources that I had at the hospital or different nurses or providers that I worked with.

Speaker 2 (00:12:41):

I was able to communicate with them. But I did all the research on my own. And I appreciate providers, you that are kind of up with the times I would say, and you’re using things like social media for patients to access you because ironically that’s kind of how I found you was on Instagram and through kind of word of mouth of a friend. And so I really appreciate that you’re using that platform for people to find you. Cause it’s just another really easy way to research different providers and get you the care that you need.

Speaker 1 (00:13:17):

Thanks so much for that. So one of our viewers is saying that sounds like they have, they’ve had hernia repairs and Mesh installed for the inguinak hernia and Mesh installed for the diastasis recti and they’ve been having GI issues. So they had a colonoscopy and it was normal and says, I met with my PCP today and he diagnosed me with IBS, which is irritable bowel syndrome, and is this common? I couldn’t argue with him. So I’m going to go down this path with him and hopefully this works. What do you think about that comment of, I couldn’t argue with him if you’re just thrown a diagnosis, IBS sometimes is a diagnosis just like, I don’t know, you probably have IBS, anyone that has any constipation, diarrhea, combination, bloating, anything. Oh, it’s IBS. Whereas there are people that truly have irritable bowel syndrome and there’s a lot more people I believe that are just labeled as having it. And that to me prevents them from seeking a cure because there’s no cure for IBS. So what do you think of that comment saying? What did he say? I could not argue with him. So I’m going to go down this path with him and hopefully this works.

Speaker 2 (00:14:38):

So I feel like throughout my medical journey, I’ve really, I’ve kind of seen it all and I feel like as a patient I’ve really evolved over the years. I think at the beginning of my journey I definitely would’ve been like, well, they’re the doctor. They know best. I need to listen to them and this is what they’re recommending. So this is what I need to do. And it can be, it’s hard. It is hard to speak up when you’re in those situations, especially because you’re seeking out these specialists and you’re looking to them for their guidance and their knowledge. And so you want to develop this trusting relationship with them, but then they’ll kind of give you an answer that doesn’t really make sense to you or you don’t really feel like that’s kind of what you’re experiencing. And so it can be very frustrating to speak up, but one thing that I’ve learned throughout my journey is that it’s better to be a little bit scared before speaking up and kind of going through that.

Speaker 2 (00:15:37):

Because once you kind of get over that fear and you speak up for yourself, that’s when you start getting the answers that you need and you’re able to communicate with those providers and really develop that trusting relationship. Sometimes I feel like providers, they don’t think that patients are going to push back or question or kind of look a little bit deeper than what they kind of just present to them at the surface level. And so I think sometimes doctors are kind of taken back by it, but then they appreciate it. I’ve had that happen before where I think we are just kind of going through the motions and then I kind of pushed back a little bit and was questioning kind of what they were recommending and why they recommended it and they kind of stopped in their tracks and they’re like, okay, no one’s ever really asked me these questions before. And so it actually strengthened the relationship that I had between them and myself. So it can be, it’s hard to speak up like I said, but in the end I feel like it’s worth it. And then if you do speak up and you don’t get the response that you need or you feel like is best for you, then it’s time to move on and find someone who is going to listen to you and is going to take what you have to say seriously.

Speaker 1 (00:16:51):

So that was a good question about moving on. I get a lot of people that come on social media and they say they feel like they can’t change doctors or they had a surgeon, they can’t change surgeons, they have a medical doctor, they can’t get change medical doctors and they’re complaining, the doctor’s not listening to me, they won’t respond to my emails. They already had one botched surgery or two botched surgeries. I’m like, well change. The one thing about the US medical system is you’re, you’re not stuck with one patient. We don’t have a socialized medicine. Assign a doctor and it’s very hard to get out of the system. You are able to see doctors wherever you want. Now that may be cost associated with it, but it’s not like you can’t. So what is your recommendation for that? I really feel that patients need to understand that they can change the same way they can charge change their car insurance, they’re charging too much. It’s a hassle to change car insurance, but you’re allowed to do that. You should be able to feel the same empowerment to change your doctor. So what are your thoughts about that?

Speaker 2 (00:18:03):

I definitely agree with what you said as the patient, it is your choice. You have the choice to stay with those providers and if you’re not satisfied with them, you have no obligation to stay with them. And you have every right as a patient to seek out a second opinion. Even if you see a provider who is world renowned in their specialty or is someone who is really highly recommended by others and you go and see them, you still have every right to go and try to see someone else and get a second opinion. I’ve been through, I don’t even know how many opinions, but until I kind of reached you, I just felt that I was not being heard as a patient. My concerns were not being taken seriously and I knew that it was, I needed a change and I needed to find someone who would listen to me and kind of take the time to put those puzzle pieces together.

Speaker 2 (00:19:08):

And unfortunately, I’m not a patient who you can sit down with for five minutes and be able to go through my story and be like, okay, I got it. I know exactly what’s happening. Definitely not the case. I mean with my initial appointment with you, I think we are in there for almost two hours with me explaining kind of things that had been going on and kind of talking through and going through my records and things like that. But that if that’s what you feel like is needed, you have every right to change. And I think that sometimes patients fall into this trap of, well, I’m just the patient. I’m not the doctor that has all this training and has all this schooling behind them. But being a patient is a very powerful thing and you also have a lot of knowledge and if you find the right provider, they’re going to respect that knowledge. And so I feel like just finding the right fit and you will know when you’re in the hands of someone who is taking your concern seriously.

Speaker 1 (00:20:03):

Wow, that’s really great. Someone mentioned here, I’ve always said we need to have an attitude and of gratitude and depreciation with a side of order, with a side order of assertiveness for oneself. That’s so true. And I think if you don’t advocate for yourself, it’s very hard to have others try and advocate for you. So what is your experience with gaslighting? So I bring this up because I just did an operation today on a patient from out of state who’s actually a physician. And this patient used the term gaslighting. Now that’s not a term that’s commonly used with the doctor patient relationship, but I’ve seen it in the past almost one to two year, two years where they’re talking about how doctors gaslight a patient situation. And he was saying that because, and he’s a physician, so it’s kind of sucks that he was being gas lit by his own peers, but maybe you can define what you think is gaslighting and if you’ve experienced that.

Speaker 2 (00:21:15):

So I definitely feel like I have kind of fallen into that category unfortunately with a few providers. One situation that happened to me recently, and it was actually kind of like the breaking point of when I decided to seek out care with you, I had been seeing a provider for a while. Unfortunately, the place that I was going, the provider that I had originally seen left medicine. So I was assigned to a new physician and unfortunately I didn’t really have a say so in who I got assigned to. It was just kind of how it fell. And the relationship that I had with that provider from the start was very rocky. And what ended up happening was, in my particular situation, my medical issues have always been intermittent. So it’s like if I don’t have a scan or don’t have someone assess me at the exact time that it’s happening, everything comes back normal.

Speaker 2 (00:22:21):

And so that’s been something that I’ve struggled with for so long is because it’s so hard to pinpoint exactly what was happening. And so one thing that I wanted to do with this particular doctor was develop a plan for if I did have my pain come back and did have an episode, what was the plan or how was I going to get care or how was I going to essentially get to the bottom of this because I’ve been dealing with it for so long? And we came up with a plan that I would reach out to her through the patient portal system and she would be able to put in some orders and kind of guide me from there. So I had an episode and I was in extreme amount of pain and I was very uncomfortable. And so I followed what I said in what we decided on together about what the plan was going to be.

Speaker 2 (00:23:10):

And after 24 hours, no response through the patient portal. So I sent an additional message, Hey, just want to make sure that you saw my message. I’m still in extreme amount of pain, I really need help. And then another 24 hours went by, still hadn’t heard anything. I tried calling the office and they said, well, the doctor saw your portal message, so they’ll be getting back to you. And when I finally did get a message back, this provider said that I had caused a, or I was a significant burden on their system because I reached out to her more than once in a 24 hour period. And she literally used the term significant burden describing me as a patient and pretty much just put the whole situation back on me and said, from our previous appointments, you didn’t follow through on anything that we went through and how can I help you if you never tried any of these things?

Speaker 2 (00:24:13):

We never discussed any of the things that she had tried. And I ended up going back and looking at kind of a summary that was in my patient portal to see kind of what she was referencing because I had no idea as a patient. And when I looked at them, we hadn’t discussed any of those things in my appointment. I think they were kind of things that she thought of after the fact, which were all great, but they were never communicated to me. And so through this experience, she kind of turned it around and made me feel like I was the one to blame about why I was doing something wrong as a patient to not get care. And honestly, it was a huge breaking point for me and it was very difficult to go through as a patient emotionally because all I’m trying to do is get better and all I’m trying my best and I’m trying to follow what you recommended and all these things. And it really hurt me as a patient to be literally called a significant burden when I was in excruciating amount of pain and I was just trying to reach out for help. And so I think that that story is very, when I think of gaslighting, that is the story that comes to mind right away because the whole situation was turned back on me and why I wasn’t doing the things that I was supposed to be doing. So

Speaker 1 (00:25:37):

I teach my residents that patients don’t want to be ill, they don’t want to be in pain. They don’t want to be the ER for six hours waiting for you to assess them. They don’t want to be in the hospital. So when people come to you with complaints about whatever their illness is, do take it seriously. I feel that some people, the first thing is are they lying? Are they trying to fudge the system or something? The reality is a very, very, very small proportion of patients, a fraction of a percent are trying to use and abuse the system and are just lying. Everyone else has a legitimate problem. They don’t want to be sick, they don’t want to be ill, they don’t want be. I mean, to sit in the ER for 10 hours to be seen, there needs to be something legitimate to kind of spark that.

Speaker 1 (00:26:32):

And so everyone, I believe all my patients now, I’ve been burned sometimes, but I believe everything they say and I go on that and I don’t try and well, do they really mean it? Are they just overly sensitive to pain when they say 10? Is it really a 10? Is it more like a four? I don’t try and kind of tease it out too much. Say I have a 10 and they have a ton 10 pain and I try and take it very seriously, but I try and teach that to their residents as well. So yeah, a lot of people aren’t coming online. By the way. One person said amen saying this session is so cool and informative. Thank you so much and so on. So let me ask you about insurance. So you have health insurance, you pay for it or you get it through your work. And then depending on your insurance, you may be limited as to who you can see that it’s covered by your insurance or the copay may be higher or I may need to go out of state. So how have you been dealing with all of your medical problems and consultations, surgeries from an insurance and payment standpoint?

Speaker 2 (00:27:59):

Unfortunately, insurance is, it’s hard as a patient kind of have to navigate that. I think one of the biggest pieces of advice that I would have for people is to just educate yourself on your insurance plan. And when that open enrollment comes around every year, if you’re getting your insurance through your employer, it’s really important to actually read through everything and read the fine print. And I have always opted for a plan that is like a P P O plan. So I don’t need to have referrals because I do see a lot of specialists. And so that has been something that’s been really helpful for me because when you have to get a referral, sometimes it takes a long time and then if the referral doesn’t get through, it’s like it causes a hassle. And when you’re feeling miserable, you don’t want to be waiting months and months and months for these referrals to go through.

Speaker 2 (00:28:56):

So when I was choosing insurance, I made sure to kind of look at the different options. And a P P O plan is something that has been a godsend to me. But again, just education is power. And if you’re able to educate yourself, you’ll be able to make the best decision for you and your family and look at the options. Don’t just pick one because, oh, that sounds good, or Oh, my friend got this one, or Oh, my parents have this one. So this is the one I’m going to choose. And always keep in mind if you’re seeing a lot of different specialists know ahead of time what insurance they accept, so sometimes you can tailor your needs to what you already know. So if your provider takes this insurance plan and that’s an option for you, that might be the best way to go. My husband and I, when we were choosing insurance, we sat down for a really long time going through everything when we moved to Arizona to kind of reselect things. And it’s extremely important as a patient to be educated on that. And it’s extremely important to take the time to really read through things and figure out what’s best for your situation.

Speaker 1 (00:30:11):

And Los Angeles in particular, it’s very difficult to find any doctor that takes all, any specialist that takes HMOs or any type of medicare, Medicaid. So I always think of it as priority. So some people they pay extra for, they have a car, you know, need a car to go from A and B, but that’s a bulk of money that needs to go. But they also like to do other things. And sometimes, especially for your healthcare, that priority is to be for your health to do those extra costs or have a health savings account or something where you can out of it. When I started my job, my second job, I had the option of getting an H M O or a PPO, and I was like, I’m a doctor. I know all the special, all my friends, I don’t need to pay so much for H M O, I will mean for a PPO , I’ll just get the cheaper H M O and then if I ever need anything, I just go see my friends, they’re not going to charge me or it’s not going to be an issue.

Speaker 1 (00:31:23):

Well, I got burnt. I needed a specialist. I absolutely needed a specialist. They’re like, oh, well go to these people. I’m like, I don’t want them people. I know who they are. I want this one. Well, he’s on your network, he doesn’t accept your insurance. But he was my friend. He’s like, I’ll just see you then he’s like, you need to do this thing. They wouldn’t approve it, the insurance wouldn’t approve me to see him. They forced me to see some other person. And then I wanted a second opinion because it was a serious issue. And the second opinion was my resident. He was junior to me, I trained him, but he works in institution, so he had no control over anything and they didn’t take hmo. So I paid a lot of money just to see him for a second paying cash. And I thought it was worth it because it was something that was my health. But I immediately changed my insurance to PPO because even me being within the system and knowing people, knowing who to go to, I couldn’t fudge the system. It’s so onerous to get approvals and limited network limited doctors. And especially I knew who I wanted to go to and they were not taking H M O.

Speaker 1 (00:32:39):

Yeah. So I learned my lesson very quickly about how difficult it is to work in that system. Someone here wrote a comment about how excellent this conversation is, and sometimes it’s hard to find compassionate front desk, off front office staff who will take the time to answer important questions such as insurance coverage and other questions even before you get to talk with a doctor. It makes it very challenging to find a new doctor. So what systems did you go through? Even find a good doctor was all online, word of mouth

Speaker 2 (00:33:18):

At the beginning. I feel like I was actually refer from the doctors that I was going to at the time. They were really great and they were able to refer me to other specialists. It’s hard sometimes if you want to get a second opinion in with someone who is in the same specialty because sometimes you’ll get a little bit of pushback. I did have that actually happen to me when I wanted to get some testing done and I was out of state, and so I would much rather get the testing done with the doctors that I have close to home instead of having to fly out of state in order to get these tests done. And as soon as I said, well, I need to get these tests done, they really switched their tune and they were like, well, you’re getting a second opinion. Yeah, well we can’t help you here then.

Speaker 2 (00:34:06):

So it definitely is challenging to find someone who will work with you and get you those right referrals. But again, it’s all in your hands as the patient. And if you want that care, you need to put in the effort and you need to try to do all of the things that you feel like are possible in order to get the answers that you need. Word of mouth is a huge thing, and I feel like actually Facebook is a weird thing to kind of say is a great resource, but it totally is because these big groups, especially when my husband and I moved from out of state, we moved from Nebraska to Arizona, and when I moved here, especially because of all of my health issues, I was like, oh my gosh, I’m going to have to find all new doctors and I don’t know who to go to here. And so I posted on Facebook and I found a dentist, I found a primary care doctor, I found all those things and it was just from word of mouth on Facebook. And so I feel like now with technology, it’s actually a lot easier to be a patient and get the answers that you’re looking for.

Speaker 1 (00:35:12):

Yeah, this is true. So one question that came about was, oh, there’s a code about my front desk. I have the best front

Speaker 2 (00:35:21):

Desk. You have the absolute best front desk staff and literally everyone that works in your office. It’s literally, it’s such a joy to go to your office. Everyone is so friendly and so happy. And the fact that your staff, my mom almost just as well as me when I was coming out to see you and my husband. Yeah, honestly it was top notch for sure.

Speaker 1 (00:35:47):

Yeah, no, they love what they do and I love them. And I’ll tell you, my front office staff, they’ve evolved. Belle nurse, my nurse, nurse Belle was not a hernia nurse when she came to me, but she took an interest. I used to be, she used to work at the institution I used to work in and she took an interest in my patients other nursery were like, ah, Dr. Towfigh’s, patients are difficult. I’m like, they’re not difficult, they’re lovely patients. What are you talking about? But Belle decided to take on my group of patients and get to learn and know about them. Now she’s like their number one advocate and also so knowledgeable by the time I see them, Belle’s already answered all their questions. And then Sheila, who’s like the closest to my heart as my office manager, she’s the best. She said, I want to take a billing class.

Speaker 1 (00:36:46):

And I’m like, Sheila, don’t do any billing. Why? I’ll tell you what you know about billing. She’s like, no, no, no, I need to know. Because patients call and they ask about insurance in network, at network, co-pay, deductible, HSA accounts, all these things. We have this AB 72, it’s like a in-network, out-of-network contract, et cetera. So she’s like, I need to learn these things. I’m like, I can teach you that. So she’s like, no, I’m going. She took a legit course at a community college on billing. She’s like a certified biller I or something. I dunno. That’s amazing. Every Saturday she would go, every Saturday, got a book, she would study it. And now, oh my god, I am so lucky that she did that. Because the patients have questions. The billers are not always the easiest person to deal with because they have a whole client list of doctors that they do billing for and she’s really able to kick in there. And we get a lot of pushback from insurance a lot. And she gets on the phone with the patient and their insurance company and the insurance company will say some BS that is not correct, and Sheila will call them on it because she speaks the language and it’s so helpful, so helpful. And of course Myron. Myron is just the most efficient scheduler and so knowledgeable to get things done and really good with radiology and getting things approved. So I’m very lucky.

Speaker 2 (00:38:24):

Yes, I cannot say, say enough great things about everyone that works in your office.

Speaker 1 (00:38:29):

Yes, thank you very much. I would agree. One question that came up online, I’m going to share the screen because it was sent over to me, is what are your tips on keeping a cool head through this whole process when you’re researching and maybe have setbacks or things don’t work out, what are your strategies to keep a cool head through this whole process?

Speaker 2 (00:38:55):

So I think that this is something that I’ve really learned over time to get better at and improve it is it’s so hard being in a situation where you are constantly trying to advocate for yourself. You’re constantly trying to seek answers. You are not feeling well, something is wrong and you just can’t get to the bottom of it. And it is extremely, it’s physically exhausting, it’s mentally exhausting. And you do have points where you have days where you just kind of sit and all you can do is cry about it and you kind of have a little pity party of your own. But I’ve learned that you give yourself that time, you give yourself a day, 24 hours you give yourself. You can have the crying session, you can have the frustration, you can get out the anger, but then after that, that mindset is not going to get you the answers that you need.

Speaker 2 (00:39:54):

And you just have to pick yourself up and just keep going and know that one day your hard work of trying to advocate for yourself will pay off. Unfortunately for me, it was almost 15 years of going through all of this to get to the point where I felt like I finally landed in the right space. And so understanding that sometimes it’s not going to be an overnight fix, even though we want it to be an overnight fix so badly, it takes time and it takes setbacks and it takes all of those things to get to that end goal that you’re hoping for and just to recognize, to kind of embrace the up and downs, because when you try to fight them, it doesn’t help anything. So to give yourself a little bit of grace and to understand that it is hard and it is okay to be sad or angry or frustrated, but just don’t let that get in the way of you losing hope in order no to get to the final goal of what you’re searching for.

Speaker 1 (00:41:03):

As a follow up, how do you compose yourself enough to discuss your issues with the medical team rationally during full on symptom flare? That’s a good one.

Speaker 2 (00:41:13):

That is a very good question and is something that I’ve struggled with. Yeah. I actually had a situation where I had gone somewhere for a very, it was almost like two weeks of intensive testing and admissions and things like that to try to get more information about what was going on. And at the end, I finally had the appointment with the specialist and I was just like, oh my gosh, please tell me that you found something in this testing that’s going to lead us in a direction. And in that appointment, he started going down the, well, we didn’t really find anything and we think that maybe this might be something that will be helpful to you. And kind of slid the psychologist card towards me. And I started bawling as a patient. Usually I really tried to hold my composure, but I just completely lost it.

Speaker 2 (00:42:12):

That was the testing that I had to go through for those two weeks was intense and it was hard. And I felt like it went through a lot of trauma as a patient through all of that just to seek answers. And then to hear essentially, this is all in your head. You need to talk to someone about it because clearly there’s nothing wrong with you, so you just need some therapy. And I went through this period after that appointment, unfortunately as a patient, I told myself, I was like, I will never cry in another appointment ever again because I do not want them to see that and see that my emotions are getting the best of me and think that that is getting in the way of my care or changing their mindset about what is going on. And I think that that’s really sad that I went through that.

Speaker 2 (00:43:04):

I don’t think that as patients, we should be having to suppress these emotions that we’re feeling going through all of this. And it is very frustrating as a patient to feel like I can’t just let go of what I’m feeling and to show someone how much this is affecting so many different areas of my life. And so for a long, long, long time, I did not cry at another doctor’s appointment because I was so nervous that they were going to say that it was all in my head and I was just being emotional about things. But now that I feel like I’ve kind of matured in my patient advocacy role, I guess I recognize that it’s okay to kind of show those emotions. And if you show those emotions and you have the right provider, they’re going to support you through that and they are going to, they’re going to help you through that instead of try to push you away.

Speaker 1 (00:44:04):

That’s really a great one. In every single one of our office rooms, Sheila has bought the extra soft super moisturizing. Yes, we have a lot of people crying in my office. Yes, it’s not me, it’s really not me. I don’t cause to cry. But they have issues that are unaddressed, chronic pain, and sometimes when they come, I know exactly what’s wrong with them. And that adds a whole extra emotional kind of breakdown on top of it, almost like an emotional release. This issue with psychology, and it’s all in your head. I hear this a lot. It tends to be more commonly with women, but I have heard it from men too. They’re often told this all in your head, are you sure that these pains are there? How’s your relationship with your spouse? Is that the issue? There’s a lot of blaming the patient. I have a lot of patients that know it’s not psychological, it’s very physical, what they’re feeling and go to the psychologist just to check that box off for their referring doctor.

Speaker 1 (00:45:20):

So they take that out of the picture and they can deal with what’s really ailing them. But on that note, there is a lot of good data that shows that people that enter surgery or have chronic pain do much better on the other side of their treatment if their depression and their ability to handle pain is addressed before the surgery. So it has to do with, is it cognitive brain therapy, C B T and other ways of whether it’s meditation or somehow wellness, if it’s trying to get control of it’s brain, body, mind, body. So recently on hernia attack, there was a post about this because there was an article among the surgeons saying, this is very important. You need to make sure that your patients are whole, not only mentally, not only psych physiologically, but also mentally before you just submit them to surgery and they’ll do better. And of course it takes a long time to figure out the mental aspect of people’s illnesses and the comment on hernia talk.com was BS. This is just wasting time and delaying care of the patient and telling them it’s all in their head. How do you get around that? You don’t want to tell the patient’s on your head, but you’re kind of telling them if you fix your head, you’re going to do better with surgery they’re going to offer for you.

Speaker 2 (00:47:04):

I think that it’s definitely, it’s a slippery slope of how you word things and forcing something, seeing a psychologist or something kind of a drastic measure. Yeah, unfortunately, I feel like in society seeing a therapist has this weird connotation attached to it. It’s a bad thing or there’s something like wrong with you that you’re having to see a therapist. And so I feel like a lot of patients, unfortunately, there’s just this horrible stigma around going to talk to someone and doing these things. And so I feel like if you force someone into it, it’s not going to benefit them. And so I think the biggest piece of advice I would have when you’re discussing this with patients is making sure that you’re talking about using those tools in conjunction with not actual medical treatment. Because supporting that is also medical treatment, but just making sure that it’s not only that you’re kind of preaching to them and just making sure that it’s discussed as a combination therapy.

Speaker 2 (00:48:17):

I can’t tell you how many times I was told that pretty much my plan after X, Y, and Z tests, we didn’t find anything. I think you need to do cognitive behavioral therapy. That was my treatment plan. And I am so open to that. And as a nurse, I’ve seen patients after surgery, I’ve seen families incorporate things like aroma therapy and music therapy and things like that into the care. And it makes a huge difference in patient outcomes. But just from a patient standpoint, knowing that it’s in combination with something else and you’re not just kind of throwing up your hands like, oh, it’s this, just do this. Go use essential oils or something. And clearly that’s not going to fix their problem. And so just having them know that they work together and they can benefit them I think is really, really important. Yeah, cause I felt like those things were pushed on me as those are the only options I have and we weren’t going to seek anything further. And that was the answer. And so that’s what frustrated me as a patient was because I felt like that was a coverup of, I don’t really know what’s going on with you, so I’m just going to say this. So then you’ll kind of go away.

Speaker 1 (00:49:40):

Here’s what the patient said that they a have foreign body reaction to Mesh. The original surgeon kept diagnosing me with anxiety. I’ve since had removal of the Mesh and been diagnosed with hyper POTS, M C A S, which is mast cell activation syndrome, EDS, which is Ehlors Danlos syndrome and other smaller disorders, which of course all it’s hard to know what’s which ones the chicken or the egg. Did you have those? And then now that’s why you react to the mesh and now you’re being diagnosed with those or did the autoimmune or inflammatory response to the Mesh trigger these other diagnoses? Although EDS is not something that would be triggered by anything that’s genetic. The original surgeon denies this reaction happens, denies Mesh complications. Even though I was a fully functioning engineer who became disabled after surgery. That really bugs me. I’ll tell you, it’s one of my biggest peeves.

Speaker 1 (00:50:34):

It kind of gets me pissed off when surgeons or doctors, I shouldn’t just say surgeons, they tell patients that doesn’t happen. I’ve never seen that before. It you’re incorrect. And they just don’t know what they don’t know. But instead of saying, I’ve never seen it before, maybe you should go see so-and-so. Or they say something that completely shuts the door and removes all hope for the patient. I’ll tell you a good story. I think I said this earlier. I had a patient that flew in from Canada and they thought they had a hernia. They didn’t have a hernia, they actually had a spinal disorder, which I diagnosed. I’m like, no, this is fine. This is not hernia. I was on a Monday, Monday afternoon, they got their MRI. Tuesday morning I called the radiologist and, they confirmed my suspicion, which is a spine problem. Tuesday afternoon they saw a spine surgeon, they had emergency surgery on Friday on the same week emergency. They’re like, this was critical. It’s a spine nerve issue. Now the surgeon I sent them to, I know very well. I trust ’em very well. I have a little black book of people today.

Speaker 2 (00:52:02):

You have a really good black. Oh, for sure.

Speaker 1 (00:52:05):

I work very hard on it. But there are plenty of excellent spine surgeons in LA and I called two other ones and one of them called me back because I was trying to get on the scene within that same day. So if my first choice wasn’t available, there were other surgeons and no, doesn’t happen. I’m like, no, it does happen. I I’ve seen it. I personally have diagnosed it. And she said, he said, Nope, never seen it. I’m like, well then what is causing this? And he gave me some answer, which medically made no sense. I think he just made it up. So I was trying to argue with him, educate him. But of course I’m not a spine surgeon, so I didn’t want to demean him by saying, you need to know, know these patients. Because I said I had diagnosed about three to five a year of this. Nope, never seen it. Doesn’t happen. Not possible. So glad I didn’t send him to that patient to that subject, but honestly I’m never going to send to that patient, that surgeon anymore. That was the wrong attitude.

Speaker 2 (00:53:16):

Definitely. And I think that it’s funny that you kind of bring up like, oh, that’s so rare. That would never happen. Pretty much every time that I’ve finally gotten answers about any of the things that I have had, it’s always less than 1% of the population has this or I’ve never seen this ever. There’s no case study that even supports this type of thing. And so as a patient, I appreciate that there are providers out there that recognize that rare things do happen. Yes, absolutely. And if I think also as a patient, it really helps the relationship between you and your provider in order to develop that trust. When as a patient, if you don’t know the answer that is okay, I am totally fine with that. But instead of using it as an excuse of like, well, I don’t know the answer, so here, go see a psychologist or do this and not actually help through that process in order to really fully have that trusting relationship, you as the provider acknowledging, Hey, I’ve never seen this before.

Speaker 2 (00:54:26):

I don’t know what’s going on, but I have someone who might know what’s going on and I can refer you to them. It makes the world of difference as a patient because then I wouldn’t have to sit and do the work of like, oh my gosh, okay, well they told me this and now I have to go seek out someone else on my own and spend all this time and energy and just, I mean I’ve seen lots of doctors and surgeons throughout my time and some of them really have a complex of I know all and if I’ve never seen it, then it’s not possible. And going to you, I feel like it was so refreshing. And so it made me just respect you even more as a provider because you are willing to acknowledge, I don’t know everything, but I do have someone who is really great in this field. And even if you feel like what’s going on, you do reach out to them to confirm what you were thinking. And it’s more of, I wish that more providers would think of patient care is a Collaborative effort instead of, I need to figure this out. Absolutely. And if someone’s going to figure out, it’s going to be me. Because when you collaborate with others, especially when you have medically complex patients, it makes a huge difference in the patient outcomes. And it’s

Speaker 1 (00:55:42):

So much more fun as a doctor. It’s so much more fun to know people with different specialties and then you learn something from them. You get to teach them something. That part I love. I’m always on the phone. I’ve got of course my black book, but there are other doctors that I learn about that I talk to and for them they’re like, oh wait, who are you? Oh, you’re a surgeon. They’ve never had a surgeon call. But I love to learn these things about other specialties and I tease it out a little bit. Cause then when I see someone like you, I don’t say, not my problem. It’s not a hernia. Most of the people that come into my office don’t have a straightforward hernia. I routinely, every week I diagnose neurologic problems, neurologic problems, orthopedic spine, gynecologic, and because I then say, go see this person. If not go, there’s like a plan. Whereas so many doctors like neurology, nope, it’s not neurologic. Okay, the patient does more Google search. Maybe it’s urologic urology. Nope, it’s not neurologic. But they don’t say, go see, maybe it’s a nerve problem or something like that. I think it’s curiosity. Some people don’t have curiosity

Speaker 2 (00:57:04):

And it makes a huge difference. Mean even as a nurse, when I’m working in the hospital, I love Collaborative care and I feel like as a nurse, that’s something that’s super important to my job and working with all the different specialties. And I just see how much, all the different specialties, if I take the time and effort to get them involved, how positively it affects the patients and the families. And it makes everyone’s life a lot easier when you’re able to kind of collaborate and like you said, learn from one another. I’m obviously, I’m a lifelong learner. I feel like I’m in education now and I feel like nursing is just kind lifelong learning career. And you can always learn something new. And I feel like I am appreciative of providers like you because you recognize that patients can also teach you things too, which is I think really powerful.

Speaker 1 (00:58:00):

Yeah, I agree. Someone wrote, my first attorney surgeon insists my patients don’t get paid. I’m sure I did everything. Which of course is not true. We have a saying in surgery, if you have no complications, it’s because you haven’t operated. Every surgery has a potential for complication. If your operating surgeon, you’ve had a complication, he had no idea what to do and didn’t seem to care. So I left and focused on finding a new surgeon who helped me. Walking away helps a lot. Another comment is about the ACHQC. So many, I think over a year ago we interviewed Dr. Ben Poulose, who’s one of the founders of the ACHQC, which sounds for the abdominal core health quality Collaborative, which I belong to. And there’s a mobile app for it. So it’s ACHQC dot org I believe, or.com. It said the mobile app helped me focus my mind after special removal on getting better rather than on my fear of the horrible pain returning again, which is very important I think.

Speaker 1 (00:59:01):

And the link is on Facebook if anyone wants to go, I would like to kind of finish this by pitching a book. Let me share a screen with you guys just so they can see what I’m talking about. There’s a patient of mine who’s an award-winning writer, Martine Ehrenclou. She wrote a book is called the Take Charge Patient. This is a picture Martine, the Take Charge patient. It is a fantastic book. I give it as gifts for Christmas. So if you’re looking for a good gift to give and you want to give it to someone who maybe has medical problems or has a children or parents that need medical care, it’s called the take charge patient. And she goes through a, basically it’s everything you did in a book form, but she, it’s not anti physician. They’re not not saying Doctors Suck, she’s saying this is how the doctor’s world is.

Speaker 1 (01:00:05):

And so you need to learn how to navigate that system to get the best outcome. It teaches you how to find specialists, how to get prepared for your first consultation, how to work with the office staff. And it’s a really, really great book called The Take Charge Patient by Martine Ehrenclou, including you can buy it looks like Amazon’s got it here for 15 to $20. So like I said, I’ve given away multiple, multiple copies. I wrote the intro for the book, which is why I’m intimately, I don’t get paid for it obviously, but knowledgeable about the book. But she actually went, as she was writing the book, she unknowingly became that patient that needed services by me and went through the system where it was difficult to navigate. So she originally want wrote the book, I believe because her mom was sick and she kind of learned the process. But then as she was writing the book, she had an illness that I need that I got involved with. That’s why she asked me to write the prelude. So the introduction, so I just want, our time is up. It always goes by so fast. We’re actually over time. Yes. But I wanted to just thank you so much for joining your time. You look great.

Speaker 1 (01:01:42):

I hope to continue seeing you blossom in your career and with the education you do. And I think you’re an amazing patient advocate, and I hope that you consider that as one of your career aspirations to fill that niche. We need more people like you. So many great comments about how this was so insightful and thanking you and so many tears, but you have to pull up your big girl pants and keep going. And yes, doing all of this while feeling so bad is so hard. Others have written about, this is exactly my story. Thank you for sharing it. So this has been a great, great hernia talk and I don’t know if you have any parting words, but I just want to thank you so much. I’m really grateful that you agreed to expose yourself in a way that’s very personal.

Speaker 2 (01:02:32):

Definitely. I think that going through all of this, obviously I’ve definitely faced a lot of challenges medically, but I honestly wouldn’t really change my story for anything up until this point. That’s ultimately why I went into nursing. I literally discovered that I wanted to be a nurse when I was in the picu, recovering from one of my abdominal surgeries in high school. And I was like, wow, these patients, they get great care from their nurses. I think this is what I want to do. And that was ultimately what kind of pushed me into the path to go into the medical field and into nursing. And so it really has shaped me as a person. And so to people who are kind of going through this journey and they’re really struggling, just know that there is a purpose behind the struggles that you’re going through. And it’s hard to stay in a positive mindset sometimes, but just try your best and just know that you’re growing and you’re developing and you’re maturing through all of this. And hardship is tough to face, but ultimately it makes you a stronger person in the end. So I think that that’s one of the biggest lessons that I’ve learned throughout this whole journey. And

Speaker 1 (01:03:53):

Positive attitude. Yes, it is such a big deal. There’s so many studies that show that those with that go into any type of illness, whether it’s cancer or surgery, if they go into it with a positive attitude statistically, that’s been shown to have a better outcome. Definitely. So with that, I will leave you all. Thanks everyone for joining me. This has been an amazing hernia. I should do more of these, but I don’t have enough people like you are so inspirational and such a wonderful people. Yes. But thank you.

Speaker 2 (01:04:29):

Thank you so much for having me. I’m willing to, if people want to reach out to me or the first questions, or if you feel like patients want me to come out again to talk about certain things, I am more than willing to continue this conversation so you can feel free to reach out to me.

Speaker 1 (01:04:47):

Maybe you need to rewrite your own book.

Speaker 2 (01:04:50):

I feel like after going through all this, I, I definitely have enough content to write one now, so never know You

Speaker 1 (01:04:59):

Can follow her at the Patient RN on Instagram. It’s a lovely, lovely compilation of posts that she’s made and I enjoy reading them all. And thank you everyone for joining me on one of our pre-holiday Hernia Talk specials. I will post this on YouTube. Please watch it and share it with everyone. This has been a great one. It’s been a rough day for me today and I love that I am ending it on such a great positive note. Take care everyone. Enjoy. Thank you so much. Thank you.