My Spoonie Sisters
Welcome to My Spoonie Sisters! If you're wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges.
Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you're here to learn, connect, or feel less alone, you’ll find a supportive space filled with understanding, laughter, and strength. Let’s journey through chronic illness together!
Tune in and join the sisterhood!
All guests featured or mentioned in this podcast will be listed for your convenience. Don't forget to rate and subscribe to My Spoonie Sisters and follow @MySpoonieSisters on Instagram for updates on new episodes and more. If you have a story to share or want to be featured on My Spoonie Sisters, please email MySpoonieSisters@gmail.com. We eagerly look forward to speaking and hearing from all our Spoonies!
Disclaimer: While we are not doctors or healthcare Practitioners, we want to assure you that this podcast is a credible source of information. It's based on our guests' personal experiences and the strategies we've found effective for ourselves. However, everyone's body is unique, and what works for one person may not work for another. If you have any health-related questions, it's always best to consult your Primary Doctor or Rheumatologist.
Remember, our goal at My Spoonie Sisters is to connect people and provide them with the support and tools they need to live better lives.
My Spoonie Sisters
When Diagnosis Becomes Your Doorway, Not Your Destiny
What happens when doctors dismiss your symptoms for years, even as you're coughing up blood? For Amy, this medical gaslighting journey finally ended with a diagnosis of pulmonary arterial hypertension in March 2023, followed by immediate hospitalization and life-altering treatments.
Amy's story isn't just about receiving difficult diagnoses – including a rare heart defect, genetic mutation, and eventually breast cancer. It's about her revolutionary decision to reject the limitations others tried to place on her life. When her doctor automatically assumed she would need to quit her beloved career as a hairstylist and apply for disability, Amy pushed back with a simple question: "Why?" This moment transformed her approach to healthcare forever.
Throughout our conversation, Amy shares powerful insights about navigating the healthcare system as your own best advocate. "Your doctor is not your friend," she explains, encouraging listeners to approach medical appointments like interviews where you're assessing if this provider deserves to be on your healthcare team. Her practical suggestions – from asking doctors to document refusals in your chart to seeking second opinions without apology – provide a roadmap for anyone struggling to be heard.
The emotional impact of chronic illness resonates deeply throughout our discussion. Amy beautifully articulates the complex emotions behind diagnosis tears – not self-pity as many assume, but relief at finally being heard, grief for what's lost, and determination to create a meaningful life despite limitations. Her work with "Know Your Lemons" breast cancer awareness organization and her goals to lower mammogram screening ages show how advocacy can transform personal pain into powerful purpose.
Ready to find your voice in a healthcare system that too often silences patients? Listen now and discover why, as Amy reminds us, "Nobody knows your body better than you."
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Welcome back to my Spoonie Sisters. Today I've got the beautiful co-host, andy Byers the one, the only. Also today on the podcast, we're welcoming an incredible advocate who turned her pain into purpose. This is Amy. After years of medical gaslighting and struggling to find her voice, amy stepped into the world of advocacy following her pulmonary arterial hypertension. This was a diagnosis in March of 2023. Since then, she's faced additional diagnoses, including an atrial septal defect, a rare genetic mutation and even a battle with breast cancer, all while raising her son as a full-time single mom and part-time hairstylist. Through it all, amy has been determined not only to spread awareness but, about chronic illness, also to help others find their voice in a system that too often silences them. Today, she joins us to share her journey, the power of community and why she refuses to let her diagnoses define her future. Let's welcome Amy to the show. Hello ladies, hello, hello. It is so nice to have you both here today. I'm excited to talk to Amy.
Speaker 2:Neat Thank you for having me Welcome to the pod. We sometimes go rogue, but it's a fun kind of rogue. We've given the kind of stuffy background. Can you tell our listeners more about you from you? Sure, tell us about yourself.
Speaker 3:So me personally, diagnosis aside a full-time mother. I'm recently going through a divorce, so that has been challenging, but in my spare time I enjoy baking, I enjoy reading and spending time with my son. I was diagnosed with pulmonary arterial hypertension back in March of 2023. After battling symptoms the shortness of breath, heart palpitations, the fatigue, chest pains and the edema, so the leg swelling I had suffered with that for about two years before I finally got my diagnosis and it was definitely life-altering. I was diagnosed on the 22nd and admitted right into ICU on the 23rd. I didn't really have time to absorb the information when it happened to me.
Speaker 3:I was diagnosed, my pH specialist explained to me what pulmonary arterial hypertension is, which, for those who don't know, it's the stiffening or narrowing of the arteries in your lungs which causes your heart, or the right side of your heart, to kind of overwork and if it goes untreated, it can cause congestive heart failure. Thankfully, I do not have congestive heart failure. I have right ventricular failure, so the right ventricle in my heart is extremely enlarged and overworked. He explained all of that to me and then proceeded to tell me that I needed to start IV medication as soon as possible, which is why he admitted me into ICU the next day.
Speaker 3:I was in the hospital for 14 days. I was there for four extra days because they were battling my health insurance, trying to get my medication covered so that I could be discharged home. When I was sent home, I think that's when in my chest and this big brick pump that I had to carry around with me everywhere I had to mix my own medications, and at that time it was like I could feel sorry for myself, or I can take everything that I just went through and turn it into something positive. So that's when I decided to start my Instagram and my TikTok to kind of spread awareness for what I had just gone through.
Speaker 1:What was the turning point that made you realize you needed to speak up for yourself and for others?
Speaker 3:It was probably three months into my diagnosis. I was suffering from severe contact dermatitis on my skin from all the adhesives, because with a central line you have to keep it covered with a dressing and you have to clean it every week and I was getting pretty much blisters, almost like a chemical burn, from the adhesives on my skin. I was going back and forth with the doctor extremely frustrated. It got to the point where nothing would stick to my skin because it was so blistered, I was in so much pain and it was just uncomfortable. Finally my doctor agreed to pull the central line and put me on sub-Q medication. It's the equivalent to the IV medication I was on, but it's subcutaneous and it was a much smaller pump and it's very similar to an insulin pump. It would have a site that I would have to put on and then hook up the machine Again, the little pump. It was 24-7, but I could move my site, so I would change my site every like four weeks or so, so it kind of limited the reactions to my skin. It was one of the nurses in the hospital when they were switching me said to me you're his only patient that's on this sub-Q and they were all curious about it. They made me stop to think there are so many other medications out there. Why wasn't this brought up to me?
Speaker 3:I was suffering with depression because it was so difficult to shower with a central line and this big pump that I couldn't detach from. I was getting depressed from just not being able to shower or how concerned I was getting dressed. Okay, I want to make sure I can hide my central line where I'm going to put this pump. It was a lot and it was a completely like a complete change to my everyday living. At that point I realized it wasn't just a conversation that I had with my doctor about what I needed in my life. I really stopped and was like I know there's other medications out there. Why? Why didn't we have this conversation? And that's when I decided that I was going to talk to my doctor about the different treatments out there, and quality of life is extremely important. I think a lot of doctors forget that when it comes to their patients. That was pretty much the eye-opening moment for me.
Speaker 2:I just I want to pause for a second talk about your heart, because it's scary, right. Because it's scary right, I have heart problems, so I wanted to sit and talk to you. How did you process and cope with this thing is responsible for keeping me alive and now my job is to focus on it. How did you cope with the pieces of independence? Asoses came and you had to perhaps maybe navigate care in a way that was not always you focused, but should have been.
Speaker 3:I'm going to be honest with you. It took a little while. It didn't really hit me until shortly after I was diagnosed with the actual atrial septal defect, which was in February of 2024. I had gone almost a year without having the atrial septal diagnosis when I got that diagnosis and the genetic mutation linked to it. That's when I realized that there was no going back. My life had this new normal.
Speaker 3:When I was diagnosed, the nurse that was set up to do my home training with my medications and everything said to me oh, there's a new drug that's in the works, it's showing amazing results, it's reversing some of the damage to people's hearts and it's going to be great. And it's one of those drugs. Can't wait for it to be approved so that you can be on it. And there was a lot of hope. When I got the diagnosis with the heart defect, I realized this is a genetic mutation. This is me. There's no going back.
Speaker 3:I think that's the moment where I realized I'm never going to go back full time to work. I'm going to be on this medication for the rest of my life. It's a progressive disease which I knew in the back of my mind when I was diagnosed. I think at that moment where pretty much that hope was stripped away, that medication was never tested on heart defect patients Statistically. I don't know what kind of risks would be for a patient like me.
Speaker 3:It was one of those things where my doctor was like not quick to put you on it. I think that moment where I realized everything's completely different, moment where I realized everything's completely different, that's another clicking point where I was like, okay, I'm going to turn something positive and start really advocating. I try not to think about the mortality rates, especially since pulmonary hypertension and heart defects have come a long way over the years. I know if we were having this conversation 10 years ago my prognosis would be like two to five years. But because medical advances and all the medicines that are out there, people are living a lot longer with pulmonary hypertension.
Speaker 2:So you are a hairstylist, you mentioned.
Speaker 3:Yes, it's a second career. I had always, always wanted to be a hairdresser. I was raised and told I had to go to college. Hairdressers don't make any money and so that's what I did. I went to college. I ended up dropping out after a year and found my way into medical billing for eight years, 19,. I came up with the opportunity to go back to school. So I was like I'm going to do what I've always wanted to do and I'm going to go to beauty school and wanted to do, and I'm going to go to beauty school. And I did.
Speaker 3:Ended up in the middle of beauty school, maybe two months shy of graduation, when COVID hit and everything got shut down and it put a huge delay on my graduation. I mean, I had quit my job. I had mainly supported on my husband at the time and my parents for supplement income because I wasn't working so I could go to school. When everything got shut down. It was pretty crazy. I eventually was able to go back and I graduated and finally got my dream job in the salon that I'm working at. Not even a year into, it was when I was diagnosed with the PAH. I think that was the other reason why I was so stubborn and didn't want to realize my life's different, because I worked so hard to become the hairstylist that I've always wanted to be.
Speaker 2:Yeah, Would you say that navigating that major mental health, how you advocate stronger, how you advocate for you and how you advocate for others, because we process so much while going through diagnosis there's layers to that going through diagnosis journey. Do you think that going through it gave you better tools to navigate conflict, like in the internal conflict of? I might have to give this up, but I can also still do these things. How did it change your perspective?
Speaker 3:I'm a very stubborn person. When I was diagnosed my doctor pretty much said to me oh, you're not going to go to work, you're going to need to apply for disability. That's just the way it is. I looked at him and I said why? He kind of looked at me like nobody ever questioned him before and I was like why can't I work? I work at a very higher end salon. I'm not booked back to back. I can relax between clients, like if a color's processing I can sit down. I work at an organic hair salon so there's no harsh chemicals, I don't have to do hair straightening treatments or perms and reduce my chemical exposure. So why can't I go back to work? He kind of said to me because again, I had the central line. He had said to me like oh well, you can accidentally cut your central line. I kind of looked at him. I think you're grasping for straws because it would take a lot for me to accidentally cut a central line. That's under my apron, under my clothes, and he kind of looked at me.
Speaker 1:Is he expecting you to trip and fall and cut yourself open with your scissors?
Speaker 3:I don't know what he? Was expecting.
Speaker 2:What kind of haircut are you giving that? You cut your central line.
Speaker 3:I have no idea. I think he was just really really trying to grasp for straw. We're pushing it here. So he was kind of like okay, we'll talk about it First. You need the first few months to get situated and then we can revisit it. So I was like okay, I like that answer a little bit better. After a few months of check-ins on the medication and everything, I said, okay, I'm ready to go back to work.
Speaker 3:And he kind of like and I said to him part of being ill is mental. And if somebody's sick and they're not mentally okay and in order for me to get better, I need to do things that I love. My job is one of them. If you tell me to go home and collect disability and sit in bed all day, I'm going to be depressed and I'm not going to get any better. And so at that point he was kind of like all right, we'll start it out slow. You can do a few hours behind the chair.
Speaker 3:I think we started off with like two days a week and then I was like okay, I'm feeling really good. So then we added another. So currently I'm four days a week behind the chair. I'm sorry I only work like 16 hours, but it puts me in a better mental headspace, yeah, um. So I think just being stubborn and not letting him pretty much just take my love, like everything I love, away, and I think that's really important. I think sometimes doctors forget, like I said, the quality of life and how strong healing mentally is.
Speaker 2:Yes, I love that.
Speaker 1:Absolutely agree. I think it's so terrible to find out we're diagnosed with things and then to take away everything that we love. That that leaves us in a hole of despair, and how are we ever going to come out of that If we either can't do the things we enjoy, that we were doing before, or we can't find other things that are joyful, cause I, you know there's a lot of people out there that, okay, let's say, are really super into fitness, and then they're diagnosed with something and that's taken away. Okay, so now they're grieving two losses, right? So you've fought really hard to keep doing hair. Are there other things that you've found also bring you joy?
Speaker 3:Yeah, my advocacy work. I enjoy posting my videos, the community that I found online, from not just fellow pulmonary hypertension patients but other chronic illness patients out there. It's amazing to get comments from people just saying thank you for posting your videos. It makes me feel less alone. That's why I love doing the advocacy work. There's one message that I received from somebody and I'll never forget it and it will stick with me.
Speaker 3:I had posted a video after I had switched to the subcutaneous pump about how I showered, how I covered my site so that I could detach from my pump, cover it, get into the shower and take a real shower, which I hadn't been able to do in almost four months. Prior to that, I had posted the video how I covered it up. I had somebody message me saying oh my God, thank you so much for your video. I had been struggling to take a shower and your video has helped me and it made me realize like that's it, that's all I wanted. Just one person, just to be able to reach out to and connect with one person, can make everything that I went through have a purpose.
Speaker 1:I think that's the perfect example of why all of us in advocacy do what we do. We're not doing it for ourselves, we're not doing it for the accolades. We are showing up and doing it to try to help someone and even if it's only one person out there, we want someone out there not to feel alone and to feel heard, understood, feel like they're getting answers, because it's one thing to get answers from a doctor, but it's another to get lived experiences from someone living the same life. That gets it.
Speaker 3:Yes, absolutely. Nobody knows your body better than you and sometimes doctors forget that. So again, that just brings back full circle quality of life and how important it is for a patient to have that conversation with a doctor, because that's not the doctor's, that's not their fourth thought. They're thinking about treatment and how to get you better, not necessarily thinking of how it's going to affect your quality of life.
Speaker 1:What made you decide to start sharing your story publicly? The?
Speaker 3:lack of knowledge around pulmonary arterial hypertension. It takes an average of 2.8 years for a patient from the onset of their symptoms to properly get diagnosed and, as I stated, it's a progressive disease, so the earlier it's caught and treatment started, the better prognosis you have in life. I had never heard of it until I was diagnosed with it, so I wanted to get my story out there so that I can help other people who've been struggling with maybe the same symptoms as me get answers. I first hindsight's 2020. I look back and I have a video 2019 where I'm like video recording my son riding his bike and I'm standing there with the camera and you can hear me breathing in the background of the video and I'm not even doing anything but standing there. I had in December of 2021, I had a moment where I had almost passed out and I went to the emergency room and I complained of a prolonged cough, the heart palpitations, the chest pain, feeling of dizziness, and they had noted the leg edema and pretty much just told me we think you have some viral infection like respiratory infection. Just go home, get plenty of rest and drink liquids. And I said okay again, didn't question it and I've kind of pushed them away on the back burner and just ignored them.
Speaker 3:In October of 2022, right before my diagnosis I started coughing up blood. Okay, it's scary. I've watched enough medical shows to know that that's something serious. I went to the emergency room and I was sitting in the waiting area for a couple hours. I had another episode of coughing up blood while I'm waiting and they kind of felt like they weren't believing me. It's like what was going on. So they did the blood work. They did a CT scan and an EKG. The doctor came over to me and said we ruled out pneumonia and it's not a pulmonary embolism, so we're going to send you home. I looked at him and I said okay, but where's the blood coming from? Like I'm coughing up blood. Where's it coming from? He looked at me and goes I don't know. It was all set to discharge me. Wait a minute.
Speaker 1:Here's the thing Our holes in our bodies are not meant to have blood. Well, there's only one hole that's meant to have blood, but we're not meant to have blood coming out of our ears, our eyes, our mouth. It's just not normal.
Speaker 3:No, he sent me home. I called my PCP because it continued for like three days after that I was having these episodes. I called my primary care doctor and they got me an urgent care with a pulmonologist an urgent visit. He was like I see some in your lungs and the CT scan it looks like you might have some low-grade pneumonia. I'm going to give you an antibiotic. I said, okay, I'm thinking, yes, finally, at least he's addressing the fact that I'm having this symptom and is trying to fix it. I took the antibiotics and I stopped coughing up blood. I was like, okay, I'm going to go about my day. That was just very weird.
Speaker 3:And it happened again in February so February 2024, again started coughing up blood. I was with my now ex-husband. We were driving and I told him I said you have to pull over. And he pulled over and I started coughing and he called 911 to get an ambulance to come get me, because we also weren't familiar with the area where the closest hospital was. I'm thinking, okay, maybe if I get an ambulance, like somebody's going to take me seriously. And they brought me to a different emergency room. Who's like, oh well, they couldn't find anything back in October, like, why do you think we can find something? So I called that same pulmonologist again. That said I had pneumonia and I said it's happening again. And so he's like, okay, I'm going to put in for an echocardiogram. I said, okay, great, I had that done.
Speaker 3:He calls me up the next day and says very briefly, nonchalantly, says well, you have pulmonary hypertension, I'm going to put in a referral for a right heart cath and I want you to see this specialist afterwards. And he gave me the doctor's name. I said, okay. So again, there was no urgency addressed to me. I had never heard of it. It didn't think like, oh, let me Google it. So they called me to schedule the right heart cath and I'm thinking like, okay, well, I need to rearrange some of my clients. So can we push it out a week so I can have like, so I can take care of my life, not thinking like my health was more important.
Speaker 3:When I finally got the right heart cath done, I had the right heart cath scheduled. I spoke to the secretary who said that I had my right. I told her I had my right heart scheduled on the 21st. I was told to see the specialist after my right heart cath and she said, yep, not a problem, let me get your information and I'll call you back. I said okay. So she calls me back and says, okay, he wants to see you on 20. Again I was like, oh, that soon. I'm thinking, oh, I got lucky. I felt like they must have had a cancellation. She's like yep, and I said okay. So I had my right heart cath on the 12th. I saw the specialist on the 22nd and he looked at me and he goes. I saw all your scans from October and your EKG that they had done back in December of 2021. I knew that you had pulmonary heart retention and how severe it was before I even saw your right heart cath and before I even met you.
Speaker 1:Yeah, that's a big deal right there. Did you feel seen in that moment?
Speaker 3:finally, yes, that's kind of what rose colored glasses because I was finally being heard and getting answers that I didn't stop to question, like when he said I'm admitting you to the ICU, we're starting you on this pump and this is how things are going to go. I never stopped to question what other treatments are there, or even the question of how long do I have to live, like that thought didn't cross my mind. He just stressed how serious it was. After that appointment I definitely went to my car and I cried, but it was that sigh of relief. I think a lot of people who struggle to get a diagnosis all have that same realization. It's the sigh of relief of finally get a diagnosis and being heard. Then you have to face the fact that this is life. You have to face the actual diagnosis.
Speaker 1:I think something for listeners to understand too is when you receive a diagnosis it doesn't matter what the diagnosis is there's always tears involved. It's not for attention, it's tears of finally feeling heard and seen. It's tears of grief, it's tears of joy for finally having that answer. I mean, there's so many different reasons why there are tears. It's not always what people think it's about.
Speaker 2:You know that's so true because a majority of the world would like to assume that the tears are for pity, and it's not. We're just processing the layers of emotion as they come Good, bad, ugly, indifferent. But it is not necessarily for any of the negative reasons why people associate sad and tears Like are we sad? Yes, do we have some sad moments? Yes, and rightfully so. But us outwardly expressing that sad or that emotion is no different than the healthier, able, more able body I no longer use the phrase healthy, able body, the healthier, more abled body person than our situation, because they're carrying something and maybe there's something hasn't manifested or maybe they are navigating the hard part differently. But it bothers me to no end, to the all, the way to the depths of my core, when I hear people go they want pity, nah, I don't, because I'm doing some pretty phenomenal things in this body. That's like ha ha, I want to sit you down real quick, maybe two, three more times and let us have our moment to grieve.
Speaker 1:It's okay. Who wouldn't want to have that moment to take in the information and maybe cry it out for a few minutes? That's normal.
Speaker 2:I consider that to be very healthy you can still do a lot of phenomenal things on the moments that you have on this earth with, without the diagnosis, alongside the diagnosis, making it be specifically yours and for your reasons. But our cans become cans when we start getting diagnosis and when they start adding on all of the things that we once thought we couldn't do or achieve. Become our cans. I will. I am, I'm currently doing, and I just wish we lived more in the moment before diagnosis than waiting until after diagnosis for us to go.
Speaker 2:But I could still do these things or no, I'm going to do it now, but I am glad that you show up for you, amy. I'm glad that you're like. You know what it's a hot hell. No, you're not about to tell me I can't do this. Give me one logical reason why I really actually can't do this and why you want me to sit sad and isolated. I think they remove the people. They want to protect us so much that they remove the compassion component of our care, and that is people interaction. To isolate us is not to heal us, because it only breaks down a different part of our body, which would be our minds, absolutely.
Speaker 1:Amy, what advice would you give to someone struggling to advocate for themselves within the medical system?
Speaker 3:To stop and look at your appointment, as your doctor is not your friend. I think a lot of people look at their medical industry and the people in the healthcare system as they're up like lair to figures. That's kind of the mentality that I had growing up, like my doctor knows a lot more than I do. They're an authoritative figure and that's their job is to tell me what's wrong and how to treat it, whatever the case, whether it's a common cold or a chronic illness. But people need to stop thinking that way and the best way to go into an appointment is like you're interviewing a doctor Make sure that you ask questions. Don't be afraid to ask questions. Don't be afraid to ask for tests. Don't be afraid to tell the doctor like hey, I googled my symptoms and I think that it could possibly be this because of XYZ. Don't be afraid to speak up. And if you get a lot of backlash from your doctors about like a test, like oh, I don't want to, I don't want to test for whatever their reason being, the best advice that I've heard is to turn to your doctor and say, okay, can you please note that in my chart? Like why you don't want to give the test because 98% of the time they'll stop and end up ordering the test because they don't want that to go in their chart, because if something comes down the line like that's a cause for them to be sued. So most of the time they'll end up ordering the test. Unless it's some extremely invasive test, they'll try and order a less invasive, which I'm all for. But then not questioning blood work.
Speaker 3:The most common thing that people hear from their medical professionals is oh, your blood work looks fine, and they just want to stop there. They don't want to further investigate. And that's when you have to say, okay, but my symptoms are still here. We need to further investigate this because obviously not every disease, not every chronic illness can be found in blood work, and pulmonary arterial hypertension is one of those. So for years of hearing your blood work looks fine, your chest x-ray looks fine, your CT looks fine. There's more. We could be doing more, especially with the fact that it took them almost two years to finally order an echocardiogram, which is one of the least invasive tests out there. It's literally an ultrasound of your heart, and so that. And then the last one is if you're not getting what you need from that doctor, look for another one, because you will find a doctor who's going to listen to you. It just may take some time. Those are the advices that I give to people.
Speaker 2:Can you tell me a little bit more, or tell us about Lemonista?
Speaker 3:I was on top of my pulmonary arterial hypertension diagnosis and sharing my story.
Speaker 3:I was diagnosed with breast cancer on September 13th of 2024. So this was six months ago. I found Know your Lemons is a nonprofit organization and their main mission is to spread awareness about women's breast health. I had come across them from another. What they call their advocates are Lemonistas.
Speaker 3:I met another Lemonista at the Healthy Voices Conference last year. She's the one that introduced me to Know your Lemons and the 12 signs of breast cancer, because I didn't know them. I had actually made a video about the 12 signs of breast cancer that caught Know your Lemons attention, and so they reached out to me and was like hey, we loved your video, we would love if you became a Lemonista for us. I was like sure, all about it. So Know your Lemons is a nonprofit organization. Their main goal is all about women's health.
Speaker 3:They have a free app that can check your risk factors for breast cancer. They will show you how to do a proper self breast exam. They can set reminders for you to do the self check, because you're supposed to be doing it every month. One of the great things about the app is it's available in over 34 languages, so it's completely accessible to everybody. I didn't feel a lump until August. I had that mentality of like I'm going through so much, I couldn't possibly have cancer on top of it. That was like first thought that went through my mind.
Speaker 2:That's real.
Speaker 3:So I waited. I had an OBGYN appointment scheduled for like a week, a week and a half out. So I was like I'll just wait, I'll bring it up to my OBGYN, and that's what I did. I had my appointment on a Wednesday and I brought it up to her and she was yeah, this is kind of concerning. I'm going to put in the referral for the breast cancer center and set you up with either. They'll either do a mammogram or an ultrasound, depending on what their thoughts are. I said, okay, great.
Speaker 3:I got the phone call on Thursday from the breast cancer center. I was like, okay, we'd like to get them in on Monday and that way you don't have to wait too long. I said, okay, that's fine. Again, I had no urgent need to get this taken care of. I went in on that Monday for my appointment. They did a mammogram, followed by an ultrasound, and the doctor came into the room and said to me I'm not going to lie, it's very concerning, but we are not going to know anything unless we do a biopsy. It could still be nothing. I want to schedule the biopsy. I would ideally do the biopsy today. However, you're allergic to lidocaine. I need to order an alternative numbing agent to do your biopsy. So I want you to come back tomorrow. I said, okay, I went in that Tuesday for the biopsy.
Speaker 3:I got the phone call that Friday that I had breast cancer and it's very surreal. I've heard it since it happened to me. A lot of people refer to that moment of you're never going to forget it, but at the same time you're going to forget it. I can tell you where I was when I got the phone call. I can tell you I cried as soon as she said the words, all that stuff. But I can't exactly tell you what she said to me. I got maybe bits and pieces of what she was telling me in that moment, but it was very surreal and very life-changing.
Speaker 3:I was diagnosed with invasive ductal carcinoma, which is also called IDC, which is the most common type of breast cancer. Basically, it just means that my breast cancer started in my milk duct and it had spread outside of the origin. I was triple positive. I was positive for the estrogen and the progesterone receptors, as well as the HER2 protein, which I had to look it up because I had never heard of it. But the HER2 protein it's found in the surface of the cells and that's what contributes to cell growth and division of your cells. So everybody's body produces this HER2 protein and when somebody with breast cancer is diagnosed as positive whether it's for the hormone or this HER2 protein it basically means that the cancer is feeding off of the estrogen that my body was producing, off of the progesterone that my body was producing, as well as the progesterone pill that I was taking as a birth control supplement, and the HER2 protein. So that all comes into play when being diagnosed and figuring out treatment for breast cancer I had a hysterectomy when I was 26.
Speaker 1:I only had one ovary because I lost the first one at eight months old. Long story there. They only did the hysterectomy at 26. It was when I was 34 years old that they finally took my ovary and I had to start estrogen afterwards. Since then they constantly are talking about when they should take my estrogen away. I can't help but wonder if part of that is because they are worried about things like that with people, but they don't tell you that.
Speaker 1:So then you have to figure it out on your own or you have to figure it out by talking to people and going they're worried about that.
Speaker 2:So my thought was my ears perked up because you were at Healthy Voices and I want to talk about that. Can you tell me about your Healthy Voices experience? What was that like?
Speaker 3:It was amazing. It was my first year going and it was life altering I guess is the best way. I met so many other passionate health advocates out there from all kinds of chronic illnesses. I met people that were legally blind. I met other cancer survivors, whether it was colon cancer or prostate cancer or breast cancer. There was even some people there who had gone through leukemia and lymphoma. And to hear the work that they do within their advocacy journeys, it's amazing. I felt extremely out of place, imposter syndrome, because here I am thinking I'm sharing my story, I'm doing great things, and then there's people who've started nonprofit organizations or who have submitted bills to their local representatives to get change in the White House. Do you know what I mean? Like it's just, yeah, it's crazy how much more you can do in the advocacy realm. That I did not know until I went to Healthy Voices. But it is so much fun and the whole thing is sponsored by Johnson Johnson. I met a lot of employees from Johnson Johnson and heard so many other people's stories.
Speaker 3:When I applied, it was prior to my breast cancer diagnosis. When I was accepted, it was prior to my breast cancer diagnosis. So when I got that diagnosis, knowing that in a couple of accepted it was prior to my breast cancer diagnosis. So when I got that diagnosis knowing that in a couple of weeks I was going to be going to this Healthy Voices conference and I was going to be able to talk to other women who have already gone through this, it was definitely what I needed in that time in my life. And a lot of the women that I got to talk to I don't think they'll ever realize how much that they helped me Because, like I said, it was everything was fresh at that moment. It was right after my diagnosis, it was before all my tests, all my scans, all my treatment. It's definitely I definitely needed it and I reapplied. So I'm hoping I can go back again this year.
Speaker 2:That's a great segue into my next question, again this year. That's a great segue into my next question, looking ahead. What are some of your biggest advocacy goals for 2025?
Speaker 3:Yep. So one of my big ones is I want to become an actual educator through Know your Lemons, where it's a program that they pretty much set you all up. That way you can really teach other women about self-breast exams, the 12 signs that they get. They pretty much set you all up. That way you can really teach other women about self breast exams, the 12 signs that they need to look out for. And my goal is to get into the local colleges around here, share my story and teach women about breast health, because they don't do that.
Speaker 3:Early detection saves lives. That is one of the things that you will hear all over. Know your Lemons is a huge advocate for, because the earlier you can diagnose breast cancer, the likelihood of the outcome. So if you're diagnosed between stage zero and stage one, you have a 98% survival rate of breast cancer. So that's what I want to go out there and teach these young women, because women younger and younger are being diagnosed with breast cancer. I'm only 35. And it's something crazy like 16% of women are being diagnosed under the age of 50. I guess I feel like it's one of those things that they should be teaching in high school. They go over, you know body changes in middle school? I think Not anymore. Well, my son's kind of going through it. My son's in sixth grade and they kind of brushed up on it.
Speaker 2:So what they tell boys and what they tell girls is way different. So the boys get a little bit about how their body works, but when I tell you that for the little girls, they have removed it. They talk about having a period and that's just about it. They don't talk about how the body works. They don't really talk about how the body is developing. They don't talk about cancers or all of those things they talk about. You could get pregnant right now and what they're telling the boys is how to put on condoms.
Speaker 2:The health aspect of the health component doesn't exist, and even more so now because it's super taboo and God forbid you tell my kids something that I didn't tell my kid in my house. But we need to actually have the conversation right. And so, because we've lost so much control over what is so many people have an opinion over what is deemed educational and what is deemed extreme. The educational components of health and wellness have been removed out of a lot of the education spaces. Because how dare you want to know how your body works? Wait for you to get to college or Google it at home is what is literally what they're met with now. I can't tell you, I can't answer any follow up questions. So I've subbed some health classes at high schools and middle schools and the thing is we can't answer the question. Ooh well, I know you have the question. Go home and ask mom and dad.
Speaker 3:Wow, yeah, that's crazy, Wow, I can't say. My son hasn't come home and asked me any questions yet but, like I said, he's still at the beginning of it. But there is a huge opportunity that's being missed out where these young women can be taught properly how to check themselves and learn the early signs of breast cancer. And it's like I said, early detection saves lives and yeah, so that's one of the big goals that I have of this year in my advocacy work is doing that. Another one is I'd like to look in and again why I want to go to Healthy Voices again is look into how I can get a bill written up to get the mammogram age lowered, Because right now it's 40. So a lot of the women that I met at the Healthy Voices conference who are breast cancer advocates are under the age of 40.
Speaker 2:I got my diagnosis at 24.
Speaker 3:Yeah, see, and I thought I was young at 35. So we need to lower it, and so that's another one that I'm definitely going to be looking into.
Speaker 2:Big things. I'm excited. I'm excited to follow your journey. I know you're going to do some amazing things.
Speaker 1:Thank you and hopefully we can see you there at Healthy Voices. That would be amazing.
Speaker 2:Yes, it's going to be a spoony meetup.
Speaker 1:Yeah, where can people connect with you and follow your advocacy work?
Speaker 3:They can find me on both Instagram and TikTok and my handle is amysfight and it's spelt PH for pulmonary hypertension.
Speaker 2:It's punny and I like it. It's punny and I like it a lot.
Speaker 1:Thank you, exactly. I love a good pun. They make me so happy. Yes, if you could leave our listeners with one message about resilience, self and self-advocacy what would it be?
Speaker 3:Listen to yourself. I know it's probably the most cliche one out there, but, like I said, nobody knows your body better than you. So follow your instincts, follow your gut and don't give up. I could not agree more.
Speaker 2:I could also not agree more. So I guess, on that note, that was a mic drop, amy. On that note, don't forget your spoon.
