The Power of Self Advocacy in Healthcare with Kiera Chan

Have you ever wondered about the resilience of the human spirit in the face of chronic illness? Brace yourself as we delve into the captivating story of Kiera Chan, a steadfast advocate for disability rights and women's health who lives with adrenal insufficiency and vascular eagle syndrome. At age 20, Kiera started a health journey that would transform her world. With daily adrenal crises and a relentless pursuit for answers, her courage has been tested repeatedly - but she continues to thrive.

Kiera's life is a testament to the importance of self-advocacy in healthcare. She opens up about her experiences, from feeling minimized by healthcare professionals to the arduous task of finding the right treatment. We explore the overlooked aspects of chronic illness, including its impact on mental health and the significance of having a supportive network. Her story offers hope, inspiration, and practical advice for anyone navigating a similar path, showcasing the need for healthcare reform and patient-centric care.

Then, we venture into her daily routine, offering a glimpse into the role medical devices play in her life. From her cortisol infusion pump to her DEXCOM G6, these tools are crucial in maintaining her health. But it's not just about survival; Kiera’s journey is about redefining what living with a chronic illness means. It's about raising awareness, sharing stories, and inspiring change. So, join us as she provides an intimate, enlightening perspective on life with adrenal insufficiency - a conversation that challenges, informs, and inspires.

https://www.instagram.com/chronically_kiera/

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Chapters

• 0:00 Adrenal Insufficiency and Vascular Eagle Syndrome
• 12:45 Advocating for Disability Rights and Women's Health
• 18:22 Dependence on Medical Devices and Tools
• 23:28 Living With Chronic Illness
• 33:52 Navigating Healthcare Challenges as a Patient

Transcript

Jen: 0:20

Hi, my Spoonie sisters. I'm your host, Gracefully Jen, and I am so thrilled and honored to bring to you a new Spoonie sister. This is Chronically Kiera, otherwise known as Kiera Chan. Thank you and welcome to the show.

Kiera: 0:37

Hi, thank you for having me.

Jen: 0:39

I'm so excited to have you here and, for listeners, we were just kind of chatting and getting to know each other beforehand. But, oh my gosh, okay, can you start out by telling us a little bit about your diagnosis story?

Kiera: 0:54

Yes, so I am 24 years old right now, and so when I was 20 years old, I was actually diagnosed with adrenal insufficiency. I actually kept going to doctors over and over again because I kept getting sinus infection after ear infection, after infection, and I told them, like I never get sick, and they would just tell me, oh, it's just allergies or you know, it's just a cold, whatever. But yeah, I was diagnosed with adrenal insufficiency and they immediately started me on hydrocortisone pills and I actually didn't get proper adrenal testing. So I don't know, like, whether I started out with primary or secondary adrenal insufficiency, because I just started on steroids right away and I didn't know because I was young and I didn't know that I needed to ask for the proper testing. But then I was doing well on a very low dose, and then I went on prednisone pills still a low dose and at this time I was a full-time college student, working part-time job, doing many activities like orchestra. I went to the gym every day, I was very active, I was a runner, I was extremely healthy, never had any kind of sickness before. And then I started my masters in 2019, and everything was going okay.

Kiera: 2:12

But then the summer of 2020, right when the pandemic started, I started going into adrenal crisis every day day after day. Every night I would wake up at 3 am and I'd be rushed to the ER and it was just a nightmare experience and I didn't know what was happening. I would go to different endocrinologists every week and they would put me on higher doses. They would do testing. They couldn't figure out what was wrong. I eventually developed the inability to even go upright without passing out and having this feeling that my head was going to explode. I couldn't eat at all. I was extremely dehydrated and then they couldn't get me any fluids because my veins had all just tripled up from the dehydration. So I was diagnosed with celiacs, gastroparesis and mast cell activation syndrome and all those things caused malabsorption of pills which were my steroids. So I couldn't absorb the steroids, which was causing me to go into adrenal crisis. So I started on doing injections and I was doing like five to ten injections of steroids a day. I had wake up in the middle of the night to inject injections. I was put on dexamethasone, which is a very long-acting steroid, so that I wouldn't keep going into crisis. But the problem with this I didn't know at the time. It is contra indicated for people with EDS, so Ehlers-Danlos syndrome, which I have, and so it makes your connective tissues extremely weak and susceptible to, I guess, trauma.

Kiera: 4:00

And so I actually flew. This was my first plane ride. That summer I flew to a different state to be put on a cortisol infusion pump so I could get a continuous infusion of steroids instead of getting like ten injections a day, and so pretty much like how diabetics get insulin through an infusion pump, I would be getting solucortif through an infusion pump. But the plane ride it caused a CSF leak because of the change in altitude and pressure and I was already experiencing high intracranial pressure from going into crisis repeatedly and I was susceptible, apparently, to the CSF leak because of being on dexamethasone. So I flew back immediately home and my doctors they knew what was going on because my symptoms were extreme I was throwing up, I could barely see, my eyesight was going from the CSF leak and they scheduled an emergency spinal blood patch but it didn't help and I think it was because I had both a sinus and spinal leak but no one could find them. Anyways, I was in extreme pain because of kind of a botched blood patch, so I had extreme nerve pain, and so I just was bedbound for around six to seven months. I had to withdraw from school because I lost my eyesight. I soon had a central line placed and then, six months later, I had a port a port that cast placed, but after six months of link flat, I slowly recovered and I started doing a lot better on being on the cortisol infusion pump, and so at this point I could walk again. I went back to school. I graduated with my master's in public health. I actually started being able to run again and go to school full-time, working all this stuff.

Kiera: 6:07

I had a year of stable health, but then, almost exactly a year later this was July of 2022, it kind of happened all over again. I had, I was on the pump and I was having some inflammatory issues I'm assuming it's some kind of mast cell issue and I couldn't absorb my steroids, even through the infusion pump, and even with emergency injections. I went into adrenal crisis and everything happened all over again. I had the high intracranial pressure, couldn't go upright without passing out, couldn't eat at all for five or six months. I lost a lot of weight.

Kiera: 6:49

This time it was different, though, because I had gotten into doctors from the previous time, and so the doctor who I'd gotten into for my previous CSF leak, he actually diagnosed me with vascular eagle syndrome, and so that is, a long bone in your neck called the styloid is pressing on your jugular vein, and so every time I would go upright, it would cut off the blood supply and I pass out, and your jugular veins are what drains the CSF fluid, and so, without draining properly, I got CSF leaks, and so I had an angiovenogram done and they found that my left jugular vein was completely closed and my right was partially partially closed.

Kiera: 7:38

And yeah, so I had to wait a while for surgery, but eventually they did a styloidectomy to remove the bone. There were many inflamed lymph nodes that were wrapped around my vagus nerve and that was causing me to not be able to eat and pass out a lot, and so I had those removed. And then, a month later after that surgery, because the pressure had gone down, it revealed a bunch of CSF leaks in my spine, and so I had to get those fixed, and that's kind of where I am right now. But I have had three blood patches in five months and the third one eventually worked, and I recently had a stent placed in my jugular vein to see if that will open up to the vein so it can relieve the pressure.

Jen: 8:54

Wow, that's a lot. That is a lot to go through at that age. Yes, and, and you know, trying to work and going to school, and you had these big dreams. How did that? How does that affect your mental health?

Kiera: 9:14

I mean it was hard, but I my degree and my career is actually already in public health. I already knew this is what I wanted to study and go into, and so that definitely helped a lot, because it kind of reiterated that this was my passion and that I wanted to help other patients like me and kind of prevent this needless suffering that I kept seeing. I think it'd be one thing if I myself just experienced this, but I see this everywhere I go. When I tell people that I study public health, then they start telling me their diagnosis story and their treatment stories and I just hear so many things that patients shouldn't have to go through.

Jen: 9:56

Absolutely, and and it's hard to watch from a distance as you're seeing this happening with other people because really, ultimately, we want to help. We want to help people not feel that way. So did you feel like you had a good support system? You know, whether it be at home with your family or your friends.

Kiera: 10:17

Yeah, I definitely had a good support system. It was very lucky because I was already living with my family to go to school at the time. We all moved in together because my sister was going to school and I was going to school, so we wanted to save money by living together, and so it was actually the best time in my life to get sick. I don't I don't have kids, you know. I don't have to support anyone else, so that's really good Did.

Jen: 10:50

did your friends treat you any differently, or were they pretty understanding with what was going on, or even concerned?

Kiera: 10:58

I think it's hard for a lot of people to understand, especially when someone so young gets so sick. So I think that's the biggest issue that I come across. I can definitely tell that now that I am using a wheelchair full time and it's more obvious that I'm disabled, I do get treated differently because I am newly disabled. I sent my whole life not being disabled and being treated a certain way and then becoming suddenly disabled. It's like interactions are completely different.

Jen: 11:38

Do you, do you feel like you get a lot of pity from people?

Kiera: 11:43

Sometimes I think it's funny because people think like they tell me like I'm so sorry you're in a wheelchair. But I think I'm not sorry because actually when I'm in a wheelchair it means I'm doing really well, it means I'm not bed bound, it means I can actually be independent and go out and do things. So for me, being in a wheelchair is like wow, congratulations, like this is a success. But I guess a lot of people haven't seen me before when I was like in so much pain or when I couldn't go upright at all.

Jen: 12:16

So yeah, I think it's hard when people can't see what's going on from the day to day and so, unless they're seeing you before you need to have, you know, a life light or something critical like that is happening. It's hard for them to imagine they're now seeing the after in the wheelchair and so to them it's just like, oh wow, poor you. But they don't understand that that's actually progress because they weren't seeing what was going on before.

Kiera: 12:44

Yeah, definitely. I used to not post pictures at all of myself sick or in a wheelchair. I would find clothes that would cover up my port or my medical devices. I tried to cover everything up and I didn't tell anyone that I was sick or like battling these issues, Because I just thought, OK, I'm going to get better soon and I just felt like embarrassed and I felt like ashamed. But then I saw that because of this it just perpetuates the stigma and you know, we don't see the background of what people are going through and we don't see, you know, disability in the media or in public. I realized I had never seen someone before or met someone in a wheelchair before, and so that's when I started to start advocating for disability rights and I started to post more pictures and videos of myself and a lot of people would comment like wow, I never thought of it like that, Because I would show even just simple tasks Like this is how I cook when I'm in a wheelchair, you know.

Jen: 13:56

And I think that's important stuff for people to see.

Jen: 13:58

You know, it's hard for me because when I was first having my problems which are different than yours, but I still had issues and so there were times where, just going to the zoo with my family, they decided I was better off in a wheelchair because I was struggling to walk and I was complaining, I was limping and in pain. So they would push me around in a wheelchair and my kids they thought it was actually kind of fun and my son would try to find like little ramps and push me up and then let go and watch me go down, and it just turned into this like fun thing for them. But it was before we started recording and sharing that kind of stuff, and so I feel like I have this whole other life that people never even got to see. I have one photo of me in a wheelchair and that's it, and so I think I really look up to people like you that are, you know, strong and passionate about sharing that stuff, because I think it's so important and I wish that more of that would have taken the time to record that. So I applaud you and I think it's amazing.

Jen: 15:07

So now that you're advocating. What does that look like?

Kiera: 15:11

Well, I have my Instagram, chronically cura, where I advocate for health equity and patient-centered care. I talk about my research, and so that's just my Instagram. But also within my career, I am trying to do more research on patient-centered care, and I decided to get a PhD in medical sociology so that I can do my own research and look at the things I want to look at within the health care system Things like medical gas lighting, for example and so I'll be starting this next month.

Jen: 15:53

That's really exciting. So do you work with any organizations or do you just do this all out of your own passion?

Kiera: 16:01

I have worked previously. For example, I have a publication on premenstrual dysphoric disorder and I worked with IAPMD the International Association for Premenstrual Disorders and so that was one of my first publications and so I'll be definitely doing a lot more like that, but it's a really great project that I did with them. 32 women actually participated in the study and they told their stories of what they went through in the health care system to get a diagnosis and treatment of this very hard to diagnose condition. Women's health condition.

Jen: 16:44

OK, so is that also related to the YouTube clip that you have attached to your Instagram?

Kiera: 16:50

Oh, that YouTube clip. I did a TEDx talk when I was 19 on menstrual health, equity and period poverty. So the issues with girls not being able to get period products, especially in low income countries, and not being able to go to school, and the organization that I worked with for that is Days for Girls and they create menstrual products for girls in low income countries. And what's cool about these menstrual products is they are cloth and they are designed in a way that you can just clean them and it looks like a piece of cloth hanging up to dry, so you don't have to be embarrassed or ashamed. You can hang them up with your other clothes and people don't have to know that it's a pad.

Jen: 17:36

That's awesome. Yeah, that's really cool. I had to do that when you're 19. I think that's really incredible. I definitely wasn't doing stuff like that when I was 19. Ok, so what is your treatment care plan? Look like. I mean, I feel like you kind of told us that. Is there anything that you've not mentioned?

Kiera: 17:58

Well, I'm definitely still working on my treatment plan. So I actually have complete pituitary failure because of the issues that I've experienced. My doctors think it's because of the high intercranial pressure has caused my pituitary to fail. So I now have to replace all those pituitary hormones and I'm still working on it. But I love my cortisol infusion pump because it's kept me alive.

Kiera: 18:28

And I also have a DEXCOM G6, which monitors my blood glucose and has an alarm so it can alert me before I'm having a hypoglycemic episode. And I use this as a proxy for my cortisol because cortisol and blood sugar are tied together. So when my blood sugar drops I know my cortisol is also dropping. Because there's no actual way to continuously monitor my cortisol and like you'd have to go into the blood lab and get your blood drawn, so I can't do that, so I use my DEXCOM G6, which is extremely helpful. And another helpful thing is the port that I have to get IV saline. I get that daily because my body doesn't produce 88 hormone anti-diuretic hormone so I can't maintain any of the fluids in my body. So very helpful.

Jen: 19:29

Oh wow, that's incredible. And so, ok, I had a question, my mind just went blank, so now I'm going to move on to another question, and if that one comes back, I'll let you know. So what do you think your Spoonish Toolkit looks like? What are the things that you feel like we have to take with you everywhere you go?

Kiera: 19:52

I am very dependent on ice, no matter what. I just have a need for ice. So I have these ice hats migraine ice hats that I wear towels, that cool when you weapon and so I bring those with me wherever I go. I love my Apple Watch because it tracks my heart rate. It has fall detection. I do like pass out and fall a lot. It connects to all my medical devices, like my Dexcom G6. I love ginger candies for nausea.

Jen: 20:32

Oh my gosh. Yes, do you have a favorite flavor?

Kiera: 20:36

No, I do not, but actually so my family's Chinese. I asked for like some ginger, and my grandma apparently keeps these sugared pieces of ginger in the freezer and I never thought of doing that before, but it's actually like a really cool trick.

Jen: 20:56

It is, and you know I keep telling people about these because it's incredible. I love to buy bags of ginger chews and I get these ones that are mango flavored. I also love the orange, but we went to Hawaii back in March and it was so exciting to see all I saw a wall of flavors. I was so excited. And I don't know, it's something I geek out on, so when other people mention it, I get really excited. Okay, so that's something I'm preparing with you. Is there anything else?

Kiera: 21:29

I drink Kate Farms nutritional replacement shakes and I think a lot of people use them like if they have like a G tube or something, but I just drink them like as is and since I tend to have malabsorption of nutrients nutrients and I lose a lot of weight these really help keep my weight up. Sorry if you do that, but yeah, these nutritional shakes are hypoallergenic and so they're for anyone who has allergies or like muscle issues. They're organic. The only sugar they have is like agave, I think, so I think they would be helpful for anyone who's like struggling with their weight.

Jen: 22:21

Okay, that's definitely good information. Okay, so I think I remember my question. So if we have listeners that are not familiar with a port, do you want to kind of explain what that's like? Is it permanently attached to you? Do you have to change it out? Can you explain that?

Kiera: 22:39

Yeah, so there is a, an actual surgery where they place the port and it's slightly underneath your skin so you can definitely see it, especially if you're like thin, like me. So if I like press on the skin, you can see like the entire outline of the port. But it's made of a material that's kind of like plastic, I guess, or rubber, I'm not really sure, but essentially it has a little tube that connects to your heart and so when you get medication you know it travels directly through your veins into your heart or fluids. But what it's completely like underneath the skin, nothing is showing. And what I do is I access the port or have like a nurse access it for me and they put a needle that has a tube, I guess, into the port in the middle of it and that way I can get like saline injections or whatever.

Kiera: 23:47

But when I de-access the port then I don't have any needle, I don't have anything sticking out of me, so it's like less risk of infection, whereas like a pick line or a central line, those are like always in, no matter what, and then you just change the dressing. You always have like something sticking out of you pretty much. But a lot of people with cancer have ports placed so they can get chemo treatments, and that's what people usually associate with ports is they think of cancer treatment, because the cancer treatment is very harmful to your veins. So you need a port placed and it can stay in for like years too, like it can stay in permanently if you need it to.

Jen: 24:32

Yeah, and you know I have a friend that has pots and she had to have one put in and you know she was getting weekly infusions in her home, and so I could see where having something like that would be so beneficial, because you're lowering the risk of an infection. It's probably a heck of a lot easier to do, easier on your veins, for sure. Okay, was it uncomfortable to get used to?

Kiera: 25:00

The actual procedure itself is pretty painful because I don't know they tell you when you have the procedure for a port. They're like, oh, it's nothing, like just take an ibuprofen or something. But actually I was like in a lot of pain like just move my arm, because it's in the right side of my chest. So if I would have moved my right arm then it would like be pulling on those muscles. So it was definitely painful for the first week and I think like going in the car, the seatbelt like rubs against the port. So some people like get like a little pillow, like a pork pillow or something like that. But I'm definitely used to. Right now it's really nice because I can just have the port de-accessed and then that means I can go in the pool or take a shower and then when it's access I can't get it wet, okay, so what kind of tips and encouragement would you give to people going with similar things?

Kiera: 26:06

I would say share your story, like on this podcast. Other stories have helped me find my doctors, my diagnoses, my treatments and just all these answers that I would never have found without the help of other people, whether I found help on support groups or through word of mouth or other people who are like, hey, I have a similar condition as you and just seeing what they've done in their treatment journey Because, especially with people with rare diseases, complex illnesses or chronic health conditions, I think doctors are somewhat clueless when it comes to just like all these conditions combined. They might be knowledgeable about one condition, but knowing how things interact, things like that, they are kind of clueless, and so knowing other people who have similar stories really helps a lot, and that's definitely been the most helpful for me throughout my entire journey. So just raise awareness, share your story, don't keep quiet about what you're going through.

Jen: 27:17

Absolutely, I 100% agree with you. So how do you maintain a positive outlook despite your challenges?

Kiera: 27:26

I use my struggles as kind of motivation for my career, and so that's why I love my research so much is. I'm just constantly motivated by not only my own experience but other people's stories, and I do a lot of qualitative research. So I interview people and do research to find out what their experience is, and so listening to their stories in the healthcare system it really helps to fuel me and feel my passion, and so my involvement in public health, my advocacy, volunteering and patient-centered research it all has become part of that passion.

Jen: 28:38

I think that's important for people to realize, because I think the more that you dive into the community, the more that it is going to help you have a positive outlook Because you have something to offer other people and I don't know. I just think it's so important I can't stress that enough to other people is. You still have so much to offer and I think it's wonderful that you're doing that and you're being a great support system to other people.

Kiera: 29:09

Yeah, I would definitely encourage people to try to find what they can do and what they're passionate about and adapt it in a way. So, for example, I found a job that I could do work from home and I found bosses that were very understanding so I could just work from home and have a flexible schedule, and I think that's important because I have seen there's not that many disabled people out there in research or academia or in the spaces that I am going into, and so I didn't have a role model or someone to ask questions to. And so right now I'm trying to apply for my PhD programs and go into these PhD programs as a disabled person and I've literally been told oh, we don't know how to support you, we've never had someone like you before and I'm like someone like me, like someone in a wheelchair. You're like yeah, so that's why I'm trying to share my story, so people see that it is possible and they should have that encouragement.

Jen: 30:28

Yeah, and I'm just floored by that because, honestly, so what if you haven't had someone like me before? Find a way to make it work. It's really not that hard, it's not that complicated. There's ways to make it work, but you are doing it. You are doing the things and you are going to be that role model that people need. I hope so. You're doing it. That's awesome, so okay. So inspiration who or what would lift your spirits on a difficult day?

Kiera: 31:04

Like I said, my research and advocacy is what helps lift me and I think it's great when other people reach out and they're like oh, I have a similar story or you know, thank you so much for sharing. This is what I needed to hear today, and so I want to know that our suffering and other patients suffering it's not for nothing. And that's what I tell people, like when I work with research with them. I tell them you know, you were diagnosed, it took you like 10 years to get diagnosed, but then people now they're getting I don't know like a few years to get diagnosed, and so other people then going through that struggle. It helps the future generation of patients.

Jen: 31:50

Absolutely, and it's wonderful to see the progress, even though it's probably not fast enough. I definitely would say that we're fast enough, but there's only so much we can do to make it faster. But to watch how it's improving over time, like you said, to help the future generations, that's wonderful, all right. So my next question would be can you recommend a few accounts, articles, blogs, any kind of resources that you find helpful to you, that you'd want to share with somebody?

Kiera: 32:25

I think the most helpful thing is to look up the foundation for whatever condition you have if you are diagnosed, and almost all of them have these things called provider locators and people recommend providers and providers within your location or your state. For example, the International Association for Premenstrual Disorders If you have PMDD, they have one, so you can look up providers and people who have gone to those providers will recommend them. And then the National Adrenal Disease Foundation for Adrenal Insufficiency they have one. The CSF League Foundation they have a provider list. So that is extremely helpful. I would also go on Facebook and find your support group for that condition and then ask about the doctors in your area or recommendations, because there might be someone knowledgeable and that can be like a second opinion or a second source, just getting multiple sources. I'm a researcher so you know I research and find different sources and I think a lot of people they don't realize that there's all these things, resources out there, even just reviews for the doctor online, looking those up.

Jen: 33:50

That's definitely so. Besides everything we've talked about, because I feel like we probably covered this, but I'm still going to ask you anyway what advice would you give to somebody in similar shoes like yours?

Kiera: 34:06

I would definitely try to find your community so you don't feel like you're alone and I wouldn't be afraid to share your story, because there's probably somewhere, someone somewhere out there who is having a similar story and it could help them. Like I said, I used to be afraid of sharing my story, but now I know that other people's stories have helped me, and so I hope that sharing my story will help others, especially people who have, like, rare diseases or complex conditions like me.

Jen: 34:44

It's really hard to just find a one-size-fits-all treatment plan, so yeah, yeah, absolutely, and you know our treatment plans are always changing and adapting and sometimes that's really hard. But you know, roll with the punches or for the best we can do. Is there anything that we haven't covered that you think would be important to share?

Kiera: 35:14

Yeah, I want people to know that you know when you're going to the doctor, when you're experiencing these things. You should know your body. Before I was diagnosed, when I was young and I'd never really been to the doctor, and so I just believed doctors when they told me something and when they're gaslighting me, and I used to think that doctors were the experts, so I believed them. And now I know that I've, you know, been gaslit before and I know when it's happening and I know that doctors are the experts of their fields. They're the experts of medicine, but they're not the experts of your body. You are the expert of your body, of your symptoms, and so if you're in pain, that is your body's way of telling you something is wrong. So you need to believe yourself and advocate for what you are feeling.

Kiera: 36:14

Even if a doctor is saying, hey, you shouldn't be feeling that, or that's impossible that you're feeling those symptoms, say, okay, yeah, I know I shouldn't be feeling this, but this is what I'm feeling, that's why I'm telling you, and so being able to advocate for yourself is very important, but it's a skill that has to be learned and it's something that we're not taught, especially as women, especially as anyone from a minority community, especially as someone who is disabled.

Kiera: 36:45

You know we're taught that we're a burden, that our needs are lower than others, that women should prioritize other people's needs over their own, and so when we are not silent and when we are advocating for ourselves, then you know we are told that we're complaining or we're whining, or you know that that accommodation is too much to make, and so it just perpetuates the stigma that we shouldn't be advocating for ourselves. And so recognizing that is really important as a patient, because unfortunately in our healthcare system, the patient has to advocate for themselves in order to get good quality care. The doctors they should be doing this for us, but a lot of times they aren't, and so unless you're not advocating for yourself, you are getting substandard care, and it's very unfortunate, and I wish our healthcare system was not like this, but especially for, you know, women in the healthcare system or chronic illness patients.

Jen: 37:51

It's very true so now that you've been through it for quite a few years now, do you feel like, okay, now you've experienced gaslighting, how do you handle that? Now that you're stronger? What do you do in that situation?

Kiera: 38:09

yeah, I actually try to use my instagram page to teach people how to deal with situations like these, so I definitely have a lot more videos like this in detail. But essentially what you do is you call them out. You say, hey, you are minimizing my pain right now. You know you should be doing that. Just be blunt and call them out and I'm sure the doctor will be very surprised. They'll be like wow, a patient has never talked to me like this before.

Kiera: 38:38

You can bring someone else with you, like a caregiver or friend or family member, so they can kind of corroborate your story. They can say, yeah, this person I've never seen them cry before, so they're definitely in a lot of pain like you really need to believe in. You can bring in evidence, like maybe bring up a timeline like this is when I was going to school full-time and working full-time, my symptoms look like this, and then now my symptoms look like this and I can't even get out of bed, you know. Bringing up that evidence, but also just like agreeing with them, like, yeah, you're right, I shouldn't be in pain, but I am, you know, and that's why I'm telling you. So those are just a few tips.

Jen: 39:26

Yeah, and I think to go along with that too. You know, once you say that, you can say so how are you going to help me? And if you can't help me, who can you send me to that can help me?

Kiera: 39:37

I think definitely putting over responsibility on the doctor is important, because often they will try to shrug off that responsibility and, just you know, send it off to someone else or whatever. It's not my problem. But you need to ensure that that doctor knows that, hey, I'm your patient, like I'm your responsibility. Now, this is what I'm here for. Like I'm not paying you for nothing.

Jen: 40:02

So yeah, absolutely, and if it's out of your specialty in your wheelhouse, please direct me to who I can go to Exactly. Okay, so I have one last question, and I don't know if this is going to apply to you or if you've heard of it. I feel like, since you love research, you probably have or you'll go research it next. Okay, so are you familiar with step therapy?

Kiera: 40:29

Step therapy no, I have not.

Jen: 40:32

Okay, well, I might just change your life now. Okay, so I wasn't sure if this was something that you actually had to deal with. So step therapy it's when patients are required to try a lower cost prescription before they can move on to the next, and so, like with my condition, biologics are a big step to help with auto inflammatory, autoimmune arthritis, and so a lot of times with that step therapy especially with the insurance is they're going to say okay, well, have you tried this first? And so that's the first step, and they will not let you move to the next one until you've tried that one, even if you're doctor yeah, that's definitely true.

Kiera: 41:17

Yeah, I mean I couldn't start on my cortisol and fusion pump right away. I obviously start on pills first, then injections, and then I was able to go on the pump. But it took a long time for me to go through that and I had to find a very specific doctor to prescribe the pump for me. And I have probably tried every single steroid on the market. I've tried every single pump that's been on the market, even the ones that have been discontinued, just because I've had to pay out of pocket. And so, yeah, definitely that's a huge issue for patients.

Jen: 41:57

Yeah, and it's super frustrating because, especially when a doctor says, okay, this is not even a good option for you, but yet your insurance is coming back and saying no, no, no, I want you to follow the protocol Like you need to start here. That's not okay, especially when your doctor themselves says this is not gonna work, this is not a good option. You need and deserve better.

Kiera: 42:18

Yeah. So what I tell patients is, when they are experiencing like negative side effects and their doctors or their insurance companies still want them to continue on this to see if it'll work, is just look up like some really adverse side effects of the medication and tell the doctor like hey look, I don't know, I was vomiting nonstop, or like you know something like that, and tell them that they were having some kind of you know reaction to this medication and that they can't take it and that these side effects aren't going away, and then the doctor will be required to try out a different medication.

Jen: 42:57

That's a really good tip. That's a really good tip. Okay, so before I forget, where can people find and follow you?

Kiera: 43:06

Yes, you can find me on Instagram. It's at chronically underscore, Kira K-I-E-R-A and yeah.

Jen: 43:16

Okay, and definitely reach out to her, because I bet you she's got some great advice for you besides what you're hearing right now, and especially if you're struggling with similar stuff. You know, talk to someone like Kira that understands and gets it.

Kiera: 43:33

Yes, thank you so much for having me.

Jen: 43:36

Oh, this has been a pleasure. Thank you so much. I feel honored that you wanted to come on here and share your story with us, and I appreciate it so much. And listeners, until next time. Don't forget your spoon.