Memory with Elizabeth Riley
Show Notes:
The legacy of head injuries that occur at a young age can be a constant challenge to accept and live with. Our guest today is Elizabeth Riley, who is the host of the Damsels Podcast as well as a certified pharmacy technician, and she is all-too-familiar with this reality, having experienced two head traumas in her infancy that continue to impact her life and memory. We get to hear the details of Elizabeth's injuries and their effects, before getting into an interesting discussion on the subjects of memory and pain thresholds. Elizabeth shares some of the biggest lessons she has learned along the way, and a few tips that can be applied to anyone's journey. Our guest admits that it has been hard to come to terms with the seriousness and inescapability of her issues, but believes this is central to living a meaningful and helpful life with post-concussion symptoms. We also chat about the importance of finding the right doctor and a few tips for this sometimes difficult and expensive process. Elizabeth has a great message of hope, that you are not going to want to miss, join us today.
Key Points From This Episode:
• Elizabeth's head injuries and the long-lasting effects she has experienced.
• The compounding issues that Elizabeth has faced with regards to her memory.
• Some tips and lessons from Elizabeth around coping with memory issues.
• Understanding the variance in the pain scale and how our perception influences our tolerance.
• Elizabeth's work in the healthcare world and what she does in pharmacy.
• Stigma and doctors; common issues of avoidance after bad experiences.
• Necessary care and precautions around medications and Elizabeth's advice in this regard.
• Finding the right doctor for your needs and how access and privilege influence this.
• Elizabeth's final advice regarding learning, acceptance and moving forward with positivity!
Connect with Elizabeth
Email: Damnselspodcast@gmail.com
Check out Elizabeth’s Podcast: Damnsels
Transcript - Click to Read
[INTRODUCTION]
[0:00:05.5] BP: Hi, I’m your host Bella Paige and welcome to The Post Concussion Podcast. All about life after experiencing a concussion. Help us make the invisible injury become visible.
The Post Concussion Podcast is strictly an information podcast about concussions and post-concussion syndrome. It does not provide nor substitute for professional medical advice diagnosis or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition.
Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. The opinions expressed in this podcast are simply intended to spark discussion about concussion and post-concussion syndrome.
Welcome to today’s episode of The Post Concussion Podcast with myself Bella Paige and today’s guest, Elizabeth Riley. Elizabeth is the host of the Damnsels Podcast as well as a young healthcare professional and a certified pharmacy technician with a background in helping patients with gaining financial access to medications. In her early life, she experienced two brain injuries that have led her to experience severe chronic migraines, memory and focus issues, as well as depression and anxiety.
Through her experiences, she has fought to work consistently to help combat the stigma on mental health. Her blend of nerdy feminism and comedic antics on our podcast, welcomes her to be open about her own mental health by relating to the experiences of the characters they discuss.
[INTERVIEW]
[0:01:50.7] BP: Welcome to the show, Elizabeth.
[0:01:52.3] ER: Thank you for having me.
[0:01:54.6] BP: Can you tell everyone a little bit about your injuries, they occurred quite a while ago and then how it affected you?
[0:02:02.0] ER: Yeah, I was in kindergarten when I had my first major head injury. I was in the backyard playing T-ball with a friend of mine and she swung the bat backwards and hit me in the head, I had to have I think 13 or 14 stitches, something along those lines and I still have the scar to this day. And then a year later, I was actually hit in the same spot when just kind of fooling around when you’re kids and messing. And so essentially, after that, I started to kind of develop some memory issues and headaches and things over time. Not so much that affected me when I was younger but things that have kind of just compounded as I’ve gotten older.
[0:02:51.4] BP: Yeah, I also find you maybe start to notice it more when you’re older, like as a kid, you wouldn’t realize that this isn’t normal.
[0:02:58.2] ER: Right.
[0:02:59.1] BP: Yeah, there was lots of times where I had to remind myself that having a headache everyday wasn’t normal.
[0:03:04.9] ER: Yeah. It’s funny because I come from a family where a lot of people have had migraines, so my sister suffers from chronic migraines and my dad actually did when he was younger. But he grew out of them and he was so convinced that my sister and I would just grow out of our migraines, that we weren’t going to have to worry about them in the long term. It turns out, that’s not really the case for the both of us.
[0:03:31.7] BP: That would have been nice.
[0:03:33.3] ER: Yeah, right?
[0:03:34.8] BP: Sometimes I’m like, "Maybe I’ll grow out of this," maybe it’ll just wake up one day and like all symptoms gone, that would be awesome.
[0:03:42.1] ER: It would be wonderful, you have to think about when you grow out of it, what’s the age that you grow out of things. Is it 27, is it 37, is it 47?
[0:03:53.9] BP: Yeah, for sure. You mentioned the memory problems, can you explain that that’s like?
[0:04:00.4] ER: Yeah. Really, like I said, it kind of compounded over time. I was a really great student in high school and even kind of in my beginning college years. After a while, it started to become very taxing to try to remember certain concepts and math and science and those areas. From there, it really kind of progressed into my everyday life and things that you shouldn’t be forgetting, you know, a lot of people kind of make that reference to, they’re getting older if they forget to turn the stove off or something. Well, that’s happened to me a couple of times actually.
Fortunately, nothing terrible has ever happened but forgetting to turn the stove off, I’ll panic if I’m on my way to work and thinking that I forgot to turn my flattening iron off or you know, my hair curling iron or something. Just really kind of short-term little bursts of memory that are just not there.
[0:05:07.0] BP: Do you find a lot of people just kind of – they say they that, “Oh, I forget things all the time too.” Is that a common reaction you get?
[0:05:13.6] ER: Absolutely, a lot of people kind of just compare it to the general every day, you forget things but most days where I can’t remember what did I have for breakfast or did I stop at that stop sign 20 seconds ago? Just things that completely – it’s very anxiety inducing because you’re trying to go about your regular day and you’re forgetting particular things that are super important and you wouldn’t really think about them that much if you weren’t constantly forgetting them.
[0:05:50.7] BP: Yeah, for sure. Do you have any tips for coping with the memory problems? I know it can be really hard to come up with those.
[0:05:57.8] ER: Yeah, so coping with memory issues is a very kind of difficult thing to navigate. I’ve talked to my neurologist about it, I’ve talked to my therapist about it and just trying to find little ways to help me remember things. Obviously, it’s hard to carry around a pen and paper everywhere you go but I do try to write things down a lot because that seems to kind of keep things in order and help me to remember to do things. I keep a planner like actually, I keep two planners and I actually like spend a ton of money on my planners throughout the year, it’s pretty bad with all the stickers and stuff.
I feel like those kinds of positive things like things that you like, reinforcing your memories with those has helped me a bit. And just recently talking to my therapist about it, there are some memory tricks that you can do, kind of associating your memories with wacky and completely out of normal things and that kind of helps as well.
[0:07:04.2] BP: Yeah, that’s awesome, thank you for the advice. I know for memory, for me, I text myself all the time, all of the time. In a conversation with say, my brother and he’s giving me advice about the podcast or the business and I text myself immediately because if he gives me an idea, by the time I get to my office, I’ll probably forget.
[0:07:25.4] ER: Yeah.
[0:07:26.8] BP: I find that’s really helpful and as you mentioned that memory thing with like associating things with other situations, it’s like, when you chew gum and you study?
[0:07:36.6] ER: Yeah.
[0:07:37.4] BP: I know that can help when you go into a test, if you chew the same flavored gum, they say it can make a big difference. I know I did it all through the university because I already had memory issues. So I was like, I’ll take every bit that I can get. But those aren’t really things that are going to help you with forgetting to turn the stove off, you could text yourself that but that’s kind of –
[0:07:58.2] ER: Yeah, it’s like super redundant, yeah. That you would just continue to text yourself constantly like I turned the stove on or I turn my —
[0:08:05.6] BP: Yeah, exactly.
[0:08:06.9] ER: Then I would be the one now to forget to text or to forget to write it down, so I would even forget that step of it but you know, obviously, as a functioning adult in society, right? I can remember a lot of things. I just feel like one thing that I have always kind of done to help me with memory is thinking about things in like a song and as kind of lame as that sounds, I can’t for the life of me – I think I will die remembering the X equals negative B, plus or minus the square root.
[0:08:40.1] BP: Yeah, okay.
[0:08:42.1] ER: You know exactly – yes. I, for the life of me, I can’t even remember what it’s called right now but I will remember that formula until the day I die because my teacher in high school taught it to us in a song format.
[0:08:55.5] BP: Some people do learn that way or just remember that way, I know my little sister could listen to a song once and tell you all of the words of the song the next time she listens to it. Poor me, I’m not like that at all.
With the planner thing too that you mentioned, my calendar is kind of my life, mine’s on my phone and it’s also the same on my computer and the same on my iPad. So it’s the same everywhere and they’re all connected and some people will ask me, “What are you doing tomorrow?” And I have to look because I cannot tell you. I will look and then I will let you know but that’s why – I find it makes a big difference and something worth keeping up with if it will help you.
[0:09:33.3] ER: Right.
[0:09:34.8] BP: Something we had discussed when we talk before the recording was the pain scale, not being the same for everyone. For me, I know my 10 is definitely different than other people’s 10 after living with chronic pain. want to give us a deeper understanding of what that might mean.
[0:09:53.0] ER: Yeah, it’s all about perception, right? Or perspective. I have a different perspective, even with the chronic pain that I have that you have. Your 10 could be a 12 for me or even a nine for me and so whenever you go in to the hospital, right? They always ask you that question of like, “What’s your pain on a scale of one to 10?” You kind of have to throw a guess at it. At least, that’s what I do because I –
Again, with the memory issues, I can never remember if this is the 10, if this is the absolute worst that it’s ever been. Then you’re in the moment and a lot of things are going on, so you’re kind of – you can’t put that number on it. It’s very hard to kind of grasp. But I think that what’s helpful is kind of understanding the person and what they’ve dealt with in their life and I know that you can’t really go over all of that with a nurse who is just trying to take your vitals. But just maybe kind of getting some idea of the level of pain that a person is in.
There are people who – if they’re at a 10, they’re screaming, they’re yelling, they’re punching the wall, they’re doing anything that they can to really avoid that pain. Whereas, when I’m at a 10, it’s almost like I blackout. One incident, I clearly remember from when I was a kid, probably about 14 or 15 years old, I came out of almost a blackout with a steak knife in my leg and I had essentially done whatever I could possibly do to get rid of the pain or to focus that feeling somewhere else from my migraine that I – I mean, I was willing to essentially stab myself to try to get that pain focused in another area. I don’t know, the pain scale is a hard thing to contend with.
[0:11:52.4] BP: For sure. Especially like going into the ER and you're trying to explain to someone, like you said, you’ve just met them and you’re trying to tell them that I have chronic pain so when I tell you I’m at an eight or a 10, that’s a lot, I’m really in a lot of pain. I still remember coming in on an ambulance and telling them I was at 10 out of 10 and the doctor looking at me, questioning me because I wasn’t screaming.
I was screaming on the inside but I didn’t need to scream, I dealt with this before, I just took an ambulance ride to the hospital, I’m done crying, I’m in a lot of pain and I would like you to take it away.
[0:12:27.7] ER: It’s almost like, an exhausted feeling, right? I don’t know if you experienced that but it’s almost like you’re just – you're so tired of the feeling of the pain that when you’re in that moment, it’s like they’ve turned the dial up very slowly. You're used to it now almost.
[0:12:44.8] BP: You do become used to it, I remember when I got a massage one day, my therapist was like, “Well yeah, but your headaches aren’t – you’re so used to headaches that a normal headache is like, whatever.”
[0:12:58.2] ER: Yeah.
[0:12:58.7] BP: It definitely changes.
[0:12:59.7] ER: Even just answering the questions, like when I go to the neurologist and they’re like, “Okay, how many days the past three months did you have a headache?” Then they ask, how many days did you have a migraine? Obviously, drawing that line between what’s just a regular little headache that I have constantly versus an actual full-blown migraine.
[0:13:21.7] BP: Yeah, another thing. I never called mine migraines because I didn’t – I called them concussion headaches, they’re almost different from a migraine. The pain is severe but you don’t get a lot of those migraine effects like the auras and a lot of that stuff that people can get. I have gotten migraines like that. But I find that my concussion headaches are actually different.
When I try to explain them to doctors, they kind of look at me and like, I’m a little crazy but if they’ve dealt with concussions, they get that when you’ve had a lot of head injury, sometimes – or everyone’s headaches are just really different. Some people, the pain really stems from one spot or feels like someone’s stabbing you or sometimes it feels like your head is exploding so it can be different for everyone. With that, we’re actually going to take a break. You can find Elizabeth at patreon.com/damnsels, which will also be in our show notes. Be sure to stay tuned to hear about this stigma of modern versus alternative medicine practices.
[BREAK]
[0:14:23.3] BP: Want to create awareness for concussions? Want to support our podcast and website? Buy awareness clothing today on postconcussioninc.com and get 10% off using “listenin.” That’s “listenin” and be sure to take Post Concussion Inc. in your photos. We’d love to see them.
[INTERVIEW CONTINUED]
[0:14:49.7] BP: Welcome back to the Post Concussion Podcast with myself, Bella Paige and today’s guest, Elizabeth Riley. We’re going to get into Riley’s job, which is in the healthcare sector. Do you want to give us some more information on that?
[0:15:01.5] ER: Yeah, so I have worked in pharmacy for about five or six years now and I transitioned. I was originally just like a retail everyday technician that you see at Walgreens or CVS but I quickly kind of found my stride and was able to transition into a hospital setting where I did a lot of medication histories and worked with more direct patient care. And as of late in the last two years, roughly I have been working in medication access and essentially what my job is, is to evaluate patients' ability to pay for their medications and kind of help them learn about different programs that are available to them kind of navigate the insurance process as well as assisting with services that we provide at like the mail order pharmacy at the hospital that I work for.
I do a lot of prior authorizations, which anybody that has every used Emgality or Aimovig or any of those medications for headaches probably are familiar with the prior authorization process that’s essentially the way that I explained it to people is that it’s the insurance has a conversation with itself saying, “Do they really need this expensive medication?” And then they ask your doctor who prescribed the medication to you so clearly, you need it. They ask your doctor, “Do they really need this medication?” And kind of a huge part of my job is telling the insurance companies, “Yes, they need this medication.”
[0:16:35.6] BP: Yeah, that is huge in the US. I’m up in Canada so it is a lot different. We don’t really have that but it is really important what you do. I have a lot of guests come on and lots of people that reach out that one of the biggest health problems when dealing with this is how are they going to afford it because in the States – in Canada, you don’t have to pay for a lot of the care because it is kind of out of the regular spectrum of what would be included in your typical healthcare and then in the US all of it is not included.
[0:17:02.8] ER: Right.
[0:17:03.4] BP: It is quite a bit to go through. And something I really wanted to focus on today is the stigma of avoiding doctors. As people feel they’re not out there to help you, I just feel like you are involved a lot with doctors, so a lot of people in the concussion community that I found, they get like one bad response from a doctor or maybe a few but then they never go back. They never go back to these people that are medically trained to help you and I just want to help like reduce that from happening.
[0:17:34.2] ER: Yes, so stigma is always going to be a barrier to care no matter what you’re looking at and you know with my job trying to remove even that little bit more of a barrier to care with the cost, I think is huge. And that really leans into kind of another kind of more focused conversation on that stigma of avoiding the doctor. And I think that there are many reasons that people do avoid it, not necessarily because they can’t afford it but because they’re scared.
They don’t want to get the answers that they’re thinking that they’re going to get and there’s almost that white coat syndrome where people are just afraid in general of the doctor. I think that avoiding doctors and kind of the scientific-based medicine that we have nowadays I think is just kind of a grave mistake because like you said, you could get one bad response or one bad interaction from one doctor and then just kind of screw the whole system.
Reality is that it’s not a one-size-fits-all and trying to find the right doctor to help you especially with issues that are neurological in nature, it's definitely a challenge and it requires a lot of patience and it requires a lot of almost kind of self-talk and self-evaluation because you have to be able to explain your condition in many different ways just because somebody understands that when you explain it one way doesn’t mean another person is going to understand it. I think a lot of people don’t understand how to advocate for themselves like that and kind of build that communication bridge with their providers.
[0:19:25.6] BP: I like that. I really like explaining it differently, I have never thought of that before because I’ve seen all different kinds of healthcare providers from alternative medicine to the prior and I’ve seen kind of neurologist like medical doctors. I have seen people who do have certificates, people that don’t – that just help people with concussions as well, which can be a little nerve-wracking because there is no basis for their education so there is some of that out there too.
Lots of concussion clinics popping up like all across North America I’ve been seeing and there is no credentials needed for those, so a little nerve-wracking for people to be claiming to help something that we don’t actually know that much about.
[0:20:08.3] ER: One of my biggest like I guess annoyances is when I see people who are a part of like multilevel marketing companies or essentially what I refer to as pyramid schemes. But they may be selling a product that has given someone good outcomes. But for the most part, these people aren’t doctors that are doing direct sales that’s why they’re doing direct sales. But they may try to sell you something or you’ll get the, “Hey, hun..” Facebook message from one of them trying to say, “Okay, well, I work for this company. I have my own business. I am selling this product and I think it would really help you” when in reality that person doesn’t know that much about your condition.
They don’t know that much about the product that they’re selling and a lot of the times, it can kind of lead to a negative outcome. Someone can get hurt by using these products.
[0:21:03.9] BP: Yeah, I know. I think it’s great advice to just be careful of those. There is lots of supplements popping up across the board that have guaranteed healing powers and that is really important to be careful before you consider taking a lot of those.
[0:21:18.2] ER: It is not just that like natural medicines or supplements are bad because here is the States the supplement industry is not regulated as much as the actual drug industry is but with supplements, you can find things that will help you. I just feel that people sometimes think that it is going to be a cure-all and it is going to just magically fix everything and I think that’s where it can be kind of dangerous because you know CBD may have helped somebody else but CBD might not help you, whereas magnesium supplements may help somebody but magnesium may not help you and vice-versa.
[0:21:53.8] BP: For sure, like I’m on a couple of supplements, some of them help a lot but they definitely don’t I won’t say they cure everything but they definitely aid me in feeling better every day.
And something that you had just mentioned a few minutes ago was finding the right doctor and getting it right, which goes both like a mental health aspect of therapist and also medical doctors. Well, do you have any advice about finding that right doctor? It is way harder than it sounds because people are like, “Oh, just try a different doctor.” Well, where? How do I find that next doctor?
[0:22:27.3] ER: Yeah and so I have to fully understand too that I am speaking from a place of privilege. I am a white woman in the United States where I have a full-time job that provides me access to healthcare at a pretty reasonable price and whereas other people may be you know, in countries that provide them with universal healthcare or may be in positions where they’re not necessarily as fearful of the healthcare system like many minorities in America are, I think that it is just learning how to trust the system and how to advocate for yourself because at the end of the day, unfortunately no one is going to advocate as you as well as you can advocate for yourself.
I think learning as much as you can about the doctors that you go to, if you know people who have certain physicians that they’ve talked to or that they’ve worked with that have really helped them and sometimes those people will work for you and sometimes it just takes finding somebody else in that same office that could help you. As much as I like to say it’s about patience and you have to, you know, maybe you’ll try three or four doctors until you find the right one, again, that is coming from the privilege that I have of being able to try three or four doctors before finding the right one.
Whereas there are many people who are less financially secure, who are in a minority or an ethnic group that may be very skeptical of healthcare especially in America and they may not be able to really give it that time and that opportunity, I think the best thing to do is if you ever go see a new doctor, pay attention to how they treat you and how they pay attention to you and listen to you. Because you’ll find doctors who are constantly just staring at their computers and not really listening to what you’re saying. It is almost like they’re Googling or trying to find like you know, what’s wrong with you immediately or trying to find that cure immediately.
Whereas, for example my neurologist, who I am very comfortable talking about, she’s wonderful. She’s drawn little diagrams for me to show me like neurological receptors like just little doodles to show me how these drugs work in my brain, and how my headaches work even. It is about finding somebody who understands your way of learning and your way of speaking and your way of healing.
[0:25:01.9] BP: Yeah, that’s all great advice and super important to realize that not everyone has equal opportunities for all of this but it is good to try if you can. I know I’ve tried lots of different specialists and some we click like right away and others, they talk more about themselves or and success stories but wouldn’t actually listen to me talk about my situation, which I found is really hard or you have doctors like you said, they just don’t really pay attention and then you find that doctor that really does.
It is important to keep searching if you can to hopefully get the cure that you really need and with that, is there anything else you would like to add before ending today’s episode?
[0:25:44.6] ER: I just think again, with migraines and headaches and any kind of trauma that’s in the neurological sense. I think that just making sure that you get to know yourself with it, understand that you know before the trauma and after the trauma are two separate things and I think learning to cope with that can be difficult. It took me like almost 20 years to cope with the fact that this head trauma that I had when I was a small child is affecting me and for the rest of my life and unfortunately, there is nothing I can do.
I don’t have a time machine. I really wish I did but if I could go back in time and you know, not have had these few head injuries happen, I would but I can’t do that, so I have to try to grow with it as best I can and learn about myself as I go.
[0:26:35.6] BP: Yeah, that’s great. Thank you, Elizabeth, so much for joining us on this special episode of the Post Concussion Podcast.
[0:26:42.7] ER: Thank you.
[END OF INTERVIEW]
[0:26:45.7] BP: Has your life been affected by concussions? Join our podcast by getting in touch. Thank you so much for listening to The Post Concussion Podcast and be sure to help us educate the world about the reality of concussion by giving us a share and to learn more, don’t forget to subscribe.
[END]
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