10 - Amanda Finley - Covid-19 Long-Haulers

Episode 10 of the Long Covid Podcast is a conversation with Amanda Finley from the USA. Amanda caught Covid right at the start of the pandemic before developing Long Covid and since then has been a real force of nature helping those with Long Covid.

We talk about her initial illness, how it progressed and how things in the USA are very different to my experiences in the UK. Amanda has crossed paths with and helped so many people, despite being ill and dealing with many of her own struggles, and it's really inspiring and humbling to hear her speak.

Amanda was an absolute joy to speak to, so I hope you enjoy listening as much as I did.

~ Covid-19 LongHaulers Facebook Support group: https://www.facebook.com/groups/COVIDLongHaulers 

Twitter @Covid19LongHaulers 

~ Patient led research through Body Politic – Hannah Davis, Elisa Perego, Lisa McCorkell https://www.wearebodypolitic.com/ 
Follow on Twitter: @patientled @itsbodypolitic @ahandvanish @elisaperego78 @LisaAMcCorkell 

~ Long Covid Documentary https://www.youtube.com/watch?v=Hfp_jPMPCBE produced & filmed by Alexey Brazhnikov through RT 

~ Ziyad Al-Aly (50% of Covid infections develop LC study) https://www.nature.com/articles/s41586-021-03553-9 

Twitter @Zalaly  

~ Melissa Lynch – Long Covid Kids www.longcovidkids.org 

~ Ed Yong https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/ 

Twitter @edyong209 

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For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Welcome to the long COVID podcast with me. Jackie Baxter, I am really excited to bring you today's episode. Please do check out the links in the show notes where you can find the podcast, website, social media and support group, as well as a link to buy me a coffee if you are able, you should not rely on any medical information contained in this podcast and related materials in making medical health related or other decisions, please do consult a doctor or other health professional. I love to hear from you, if you've got any suggestions or feedback or just want to say hey, then please do get in touch. I really hope you enjoy this episode. So here we go.

Jackie Baxter  
Welcome to the podcast. I'm really, really excited today this podcast is going international, and I've got Amanda from COVID 19 long haulers discussion group on Facebook here. We actually met on Twitter. We did so welcome. This is really

Amanda Finley  
cool. Thank you so much. This is wonderful. I'm so glad you're doing this. Let's start off. Can

Jackie Baxter  
you introduce yourself a little bit? Who are you? What do you do and or what did you do pre COVID,

Amanda Finley  
I have no idea what I'm doing. Now, I tell people that all the time, like, you look at me like I think I know what I'm doing, and I don't know, but before all of this, I had a really rich life. I'm so happy with the things that I've gotten to do, and that makes it easier to focus on what I'm doing. Now, I've wanted to be an archeologist since I was eight years old. I was in this program in grade school where they took us out. I was in like, third, fourth, fifth grade, they took us out and we did an actual archeological dig. So we were out there. We had to frame out the units we were digging in. We had to take meticulous notes, do soil sampling. It was more professional than any dig I've ever been on in my adult life, and when we were done, we had to publish on it, and I still have that book with all of our narratives in it. It just It means everything to me. So cool. But of course, like any person who wants to follow their dream, I did something else for 10 years. I went to school for music. I was in the drum line again. I don't know what I was doing, because vocalists have no sense of rhythm, but sure, I can hit that thing with a mallet. It's just like a piano you hit right? It is not, not. But I sang opera for 10 years with the Saint Louis Symphony Orchestra and with Union Avenue opera. But in 2005 I went to Thailand and Cambodia for a month, and I fell in love with it. Rode a bicycle all around the temples of Angkor. When I got back, I said, This is it. This is what I love. I went back to school for Anthropology and archeology. I also studied some medical anthropology, which really come in handy. The past 18 or more than 18 months now, the apocalypse, whatever. Really, I've been doing archeology for about the past 14 years. And then March 6 hit a week before my son had it was February 29 the last day I was sort of out in the world. It was a beautiful day. I used to work a lot with the homeless in downtown Kansas City, and I had this new friend who wanted to do something with me. So we made 50 bags of toiletries, food items. Socks are really big, baby wipes. We just drove all around Kansas City passing out these bags. It was beautiful. We had the windows down just finding all of all of our friends on the streets. But my son was in the back seat. He was very quiet, and I thought, well, this is unusual. A seven year old usually complains a lot more than this. And when we got home, I asked him, buddy, you feel okay, why don't we stay home tomorrow? He had a temperature of 101.3 he just he stayed in bed, which is very unusual. He had a cough every now and then, but I didn't think anything of it until a week later, when it hit me, and I thought, oh my god, I think this is what this is. My physician, even though I didn't have insurance, he would still see me. I would just have to pay cash. He was out of the office that day, and I realized I have asthma. I need to do something about this best so I called ahead to this clinic, and I told them, I've got a problem here, and I don't think I should just walk in. No, no, just walk in. No, I don't think I should just walk in. Long story short, they weren't going to do anything unless I had a positive chest X ray. And of course, it was not positive. Was ground glass opacities. And when I got home from that appointment, I closed the door to my apartment, and I did not open it for four months because I didn't I didn't know how long I was going to be contagious. I knew I could not get anything else on top of it. It wouldn't matter what it was. But I also have not been able to do any archeology since this love of my life is just I can barely walk up a hill. Without feeling like I just want to pass out. I can't imagine walking up a hill with all of that equipment, a total station, the transit unit for mapping, shovels, screens, Oh, dear God, but that's okay. I've gotten to do these things that I love, and I'm fine with that. Maybe I'll get back to it someday. But we we have really important work to do right now, and I'm very focused on that, and I'm happy with that. I've got these wonderful memories I can reflect back on, singing at Carnegie, hugging Itzhak Perlman backstage high five. He's a great hugger. Oh, that's awesome. And I've got this wonderful circle, very broad circle, of friends, and all these different worlds. So I'm fine saying this is a chapter of my life that I lived, and I'm proud of it. But right now, we have people in very serious need. Let's help them. Yeah,

Jackie Baxter  
that's amazing that you are able to be so positive. It's actually, it's refreshing and incredibly inspiring, actually, that after all of that, I mean, it sounds a sort of a familiar story. I got a very similar time to you. I was early March, and at this point, certainly over here, we were very naive about it. I mean, we know now that there'd been cases well before March, but I think the first documented case, the first actually positive tested case in Scotland was first week of March, or something like that. But we now know that it had been here since January, February, because people have since had tests and things to tell that. And it sounds similar, you know, your son getting into February and again, that lack of any sort of support, yeah, you know? Oh, well, just go deal with it yourself. We have bigger problems to deal with. You're

Unknown Speaker  
gonna have a bigger problem.

Jackie Baxter  
Yeah, it's that feeling of abandonment. Is just, it's kind of, I was talking to somebody about this the other day. It's going to be with you for a long time. It's trauma. People are overlooking that. Well, in

Speaker 1  
that first wave, in particular, of the almost 14,000 people in our group alone, and there are hundreds of groups out there, we're far from being the largest of those 14,000 people. 1/3 of us were sick in March 2020, that first wave. Oh, my goodness. And we're seeing this universally all over the world. People were sick during that time period, and we have no validation, no quote proof, because there were no tests,

Jackie Baxter  
yeah, and we don't count in statistics either. I think that is part of the problem, because there was no testing. How do they know that we exist? I mean, they're making absolutely no effort to actually try and count it. But it is also quite a difficult thing to do with no testing. So the long COVID problem is a much bigger, you know, the numbers are so much bigger than anybody thinks, and it's that first wave, and the people

Speaker 1  
from that wave seem to be sickest. They seem to be the most ill. The people who have been struggling the hardest, the longest in the United States. In order to access a post COVID Care Clinic, you have to have a positive test. If they have federal funding, you have to have a positive test. So we've got these people who have been ill for a year and a half. They can't see anybody for it. It's it's disgusting. That's

Jackie Baxter  
horrendous. What are they supposed to do? Online, Facebook groups,

Unknown Speaker  
that's horrible. That's horrible.

Jackie Baxter  
It is horrible. And you say those people that have been ill that long, I mean, you know, you get the employment issue as well. You know, certainly over here, you'll get maybe a bit of sick pay, but by the time you get to 18 months, nobody's sick pay that long

Speaker 1  
well, and in the United States, we don't have paid family we have a thing called FMLA family medical leave, blah, blah, blah, because I worked on medicine for 25 years as well. My dad is a hospital administrator who's also in the Navy, so conscription, where they like break the bottle over your head and you wake up. But I was typing medical reports and filing insurance. He volunteered me to help when they couldn't find help. We don't have the social support network in the United States that many other countries do. So a lot of people are struggling financially in the worst ways, many of us are going homeless. You see a lot of people because they either don't qualify for government assistance, like through Medicaid, some states, like the state of Texas, if you are an adult male, the only way you can get on Medicaid is if you are first on disability. And it takes a very long time to get on disability, six to 12 months on your first try. If you're lucky, it's almost always rejected the first time. So it's a mess.

Jackie Baxter  
And these are ill people as well, aren't they? I mean, if you're really unwell, it's hard to fill in forms. If you're so brain fogged that you can't, and

Speaker 1  
most people don't even know where to start. It's so complex, it is. It's

Jackie Baxter  
scary. I mean, I guess that's where the support groups come in. So when did you start up the Facebook group and how did it happen? Well,

Speaker 1  
I because I have asthma and I also have alopecia, as I'd lost all of my hair after I had my son eight years ago, and it never grew back. So knowing the healthcare system, I knew exactly where to go. What to do. And I told the doctors, okay, before you send me off to this endocrinologist, I need you to also run this test, that one, that one, that one, okay, yes, sure. So that way, it wasn't like, I'm gonna go in to see this doctor and then come back in two weeks for results. No, just run it right away. We never found anything. I went through two healthcare systems, saw every ologist we could think of, we never found answers. So when I wasn't getting better after this, what I thought was just a pneumonia in March 2020 I didn't think anything of it. I thought, Well, I'm just going to be medically strange again and never have any answers. Cool, cool. But then I found out about two other people, and I thought, huh, maybe I'm not alone. Let's start a Facebook group. We'll just be miserable together. We'll find 50 people, and we'll never have any answers, yes, and I found a few more than 50. It's horrifying. It is just horrifying to think how many people have been affected by this. But on June 23 I had this kind of a sharp nodding pain in my chest that radiated down my arm, and again, I didn't have insurance, so I wasn't sure what to do. I had a friend come over, and I just said, Hey, I'm going to leave the door unlocked if I'm on the floor, then call an ambulance. But I went on Facebook and I told my friends I don't know what's going on. This is what I'm experiencing, and if something does happen to me, just never stopped telling my son how much I love him. That pain went on for a couple of days. It was very scary. And three days after that, I finally decided, okay, let's just start this group. Because if I'm going through this, someone else might be as well. You know, I picked up a little bit of momentum at first, and then about three or four weeks in, someone from the UK came in and said, I saw you on this morning. And I was like, what, I have not worn pants in four months. I was not on any TV. And it was like this flood of people from the UK, and it just sort of went from there and now with 1000s and 1000s of people in the group comparing stories, and it's just taken on a life of its own. It's both beautiful and horrific at the same time. Yeah,

Jackie Baxter  
and I think certainly for me, I eventually started getting better, and then stopped getting better and started getting worse again. And I think up until that point, I just thought, well, I've just had a really bad reaction to this, and, you know, I'll be fine. And I think, like you said, we didn't realize how many other people were affected. You start to hear the odd story, but the news weren't picking it up because there were so many other people dying. They didn't care about anyone that wasn't dead, which sounds like a horrible thing to say, but they didn't, you know, all they've ever reported is the death toll, which is a huge thing, but it's not the only thing. And then suddenly these support groups cut popping up, and you think, oh, whoa. There's like 10,000 other people like me. This is horrendous, but it does mean that you can bounce symptoms off each other, and even if there are no solutions, just some support from people that understand

Speaker 1  
one thing, we started right away, because we didn't know what was going on. A lot of the groups, we were just sort of fumbling around at first like, what do we do with this? We don't know what's going on. One thing we did do we started a symptom list, and we weren't sure about correlation, especially not causation. But we just said, Okay, if you've got a symptom, write it down on this list. Put it on there, because most likely you're not alone. And I still remember one of my moderators. She was a friend from before here in Kansas City. She said, My teeth are chipping. And Emily always has interesting things in her life. I was like, Emily, I love you. Put it on there. 300 other people said, Yeah, me too. And I realized, Oh, my God, okay, what else is on this list? What should I be looking for? You know, it's not anything scientific or just put it on the list. Take note of everything. Take meticulous note of everything. And that has carried over into all the things we've done. Because if we're not taking meticulous note of everything that's going on, we could be missing a very vital key in this massive puzzle. Every piece counts,

Jackie Baxter  
and I think we are the people that know the best. Aren't we? We're the ones that are going through it. No one has more answers than we do, exactly, which is a scary, scary thing, when you think about

Speaker 1  
it, you're coming to me for answers. Are you? What are you sure about this? Since when was

Jackie Baxter  
I a medical expert? But I think we are the only experts really on our condition. In some ways, there were people trying to research and trying to help, but actually, they need us as much as we need them. I think

Speaker 1  
three people who have done the best at this outstanding over at patient led research through body politic, Hannah Davis, high five. Hannah. My headphones. I wear them because Hannah has some similar ones. And I want to be like Hannah, Elisa Perrigo and Lisa McCorkle. They've just been outstanding with patient led research. And I truly hope that with all this funding in the United States through the NIH $1.15 billion if we are going to do solid research, they need to be talking. With patient led research. If we are going to make the most out of this, go to them first. Yeah, they need to look at your symptom list. My symptom list is, wow, what's going on here? Oh, my God, that's 300 pages long. But one of the things that I'm scared about with all this funding, and it's a big chunk of funding, one of the things that I'm scared about is that we have these larger medical research institutions who already have a development department with a very solid grant writing department, but they're funding research that maybe is tangential to what they should be doing in terms of long COVID Listen to the patients first before you just go and write these grants that you know you're going to get because this is your crack team of grant writers. Don't look at the research that you're doing right now. Look at the patient led research first, because otherwise that money, it might not ever help any of us. And it's really hard, especially for the people in the first wave, to look at this and know, hopefully we can contribute to this, knowing we might not ever benefit from it, a lot of what we're doing, we know it's not for us. We've been given this machete and Okay, find your path through the jungle. We hope we're doing the best thing and making it easier for those who come behind. It's all about

Jackie Baxter  
advocating for those that can exactly I'm lucky that I am not as debilitated as some people. I mean, I still am not able to work and I still can't really exercise. I was very fit before this. I know I'm not. It's massively impacted my life, but I don't suffer from brain fog in the same way that a lot of people do. I can have a conversation with somebody. I'm not bed bound most of the time, so I can do things that other people can't. So I don't see myself as lucky most of the time, but in some ways, I am compared to some others. So I feel like I should be trying to do something. I feel that.

Speaker 1  
I feel that well until this summer, we're not sure 100% but we think I had Delta, who would have been a third round with COVID. You may have heard about this little place called Missouri in the news with Delta, the southwestern corner to Missouri. That's where I grew up. They were hit so hard this summer, and of course, it's a conservative stronghold down there. It's not that they didn't see my post. They just thought, Oh no, you know why. It's not going to happen to me. And then it happened to them. Delta was devastating. It just It tore like wildfire through my hometown, and it got to the point where everybody knew someone, more than one person, quite a few more than one person on a ventilator. Everybody knows several people who have died at least, and that was when they started lining up for the vaccine. They were the first municipality in the state to reach 50% fully Vaxxed. It was horrific watching this happen and to welcome the people who made it through into the support groups. Get in here. I know you need it. You're welcome in here. It does not matter what you thought, what you said, what you believed before. You're welcome in here.

Jackie Baxter  
That's terrifying, isn't it? And it's the same story. It won't affect you. Oh, I'll be fine. And it's always that story, until suddenly it is and I don't know, it's frustrating, because you look at these people and you just think you saw this coming, but at the same time, you know how they feel. You know exactly. You don't want to say I told you so, because you think I went through that. You know, I've been through. I've felt all the things you're feeling,

Speaker 1  
yeah, and you don't have to say I told you, so it's cruel, but they often say it for you, you told me and I didn't listen.

Jackie Baxter  
They know, yeah, yeah. You just wish that you could get your message through before it got to that. And I think that's why all this campaigning and stuff is so important. It is I can stop one other person from ending up like me, then it was worth it. Exactly. We'll be right back. I'm interrupting myself for a second to tell you about long COVID breathing. The Fabulous Vicky Jones and I have teamed up to bring you long COVID breathing. We are both passionate about sharing our expertise and experience of the breath and how incredibly helpful that can be with long COVID, we've worked together to develop a course that is specifically tailored to those with long COVID. It's a six week course with 12 sessions, all delivered online. The community feel and learning that we're all sharing is such a joy to find out more information and to sign up for our courses, workshops and other shorter sessions, please check out the link below long covidbreathing.com or email long covidbreathing@gmail.com to start your breathing journey with us,

Speaker 1  
we made a documentary at the end of The year through RT Alexei brezhnikoff is just one of the most beautiful humans I've ever had the chance to work with. And that that was released. It's on YouTube. It's released in January. When that happened, I started getting this flood of what I thought were spam messages from Cuba. Why is Cuba in my inbox? This is silly. Yeah, and I speak a little bit of Spanish, but I just didn't have the time to read the messages and translate. But one person sent a picture, and it was a picture of me on his TV. And I thought, oh, I should maybe pay attention. So I called in one of my group members, who is a native Spanish speaker, and I said, Milton, help me out here. And then they started coming in from Peru, Venezuela, Colombia and then Northern Africa. All over the world, there are these pockets all over the world we take for granted the media access that we have, and every message said the same thing. I thought I was going crazy. I thought I was alone. It's the sickest I've ever been. I actually have one in Liberia that we regularly send groceries to him. There's a service that we can use. And people all over the world are struggling like this. Just because you don't hear about it from that country, that does not mean it's not happening. There as little access as we have to resources. So we think they have nothing. They really have nothing. South Africa in particular, every person I know from South Africa says I'm the only one I know who's ever had COVID. And there are so many long haulers in South Africa, yeah, and

Jackie Baxter  
then suddenly they connect with other people. And it doesn't make you any better, but it does make you feel less alone, I guess, doesn't it? Yeah, yeah. I think the statistics were something like one in six adults that has COVID goes on to get long COVID. And if you think about the infection rates at the moment, and you're thinking, you know, in a couple of months time, but yeah, you know, in other countries as well, yeah, just because they may not be counting it in the same way, those people are still there, yeah,

Speaker 1  
and they're not even counting it in a lot of places. To be fair, a lot of places are struggling with other areas that are more systemic. It's just so low on the radar and the counts that I've seen, and in terms of percentages statistics, it varies so wildly. But there is a very astute researcher in St Louis. I actually used to work at this facility, Washington University in St Louis, Ziad al Ali, a prescient study back in January, it was released in nature stating that about half of people who develop COVID will wind up as a long hauler or have these ongoing symptoms. He was one of the first to really step back from the headlines and whatever other research was going on. He said, No, let's actually look at this. When this study came out, everyone said, Whoa, that's kind of big. He's a person to watch. He's active on Twitter, which is how we connected.

Jackie Baxter  
I'll put links to one of these things in the show notes so people can access things like your YouTube video that you were talking about and some of

Speaker 1  
the other things. Yeah, I'll send you links as well so that you don't have to go searching for it. There'll be

Jackie Baxter  
a lot of things that people will be like, Oh, I'll go look at that. Who doesn't know how to spell Zia dot Ollie? Well, yes, exactly.

Speaker 1  
He's a wonderful human I appreciate all of his work so much. I guess

Jackie Baxter  
it's like we were saying earlier. You know, whatever the statistics are, the numbers are going to be higher because there are so many people that haven't been counted and

Speaker 1  
people who don't even know what they're going through. I had someone who joined last week. He saw the documentary and realized that he's been sick for over a year, and he saw that he was like, oh my god, I thought it was alone, but he's here in the United States. He had no idea, and unfortunately, he was going to go out and end his life one day in the last week or two, at the last minute, he ended up calling a crisis line, and the person who answered it was also a long caller, so he's still here. We talk every day, but that just if you're listening to this, obviously you probably already know you're a long hauler. But if we can reach just one person. It's worth it. It is absolutely worth it. Yes,

Jackie Baxter  
definitely, yeah. We've certainly noticed it over here. How on earth do people not realize how debilitating long COVID is? And actually, it's because the narrative from the start has said that unless you're really old or unless you already have something wrong with you, then you're gonna be fine. And even now, they're still saying that, and it's like, how, how there are so many people like me and worse off than me and younger than me. You know, I was 30 when I caught this. I was incredibly fit and completely healthy, and here I am, 19 months later, and I still can't work. And there are so many people that are worse than me and children as well. Don't get me started. Yeah,

Speaker 1  
you should consider talking with Melissa Lynch at long COVID kids. She's another person who came to me. I don't trust anyone, but I need to talk. Okay, come over here. Now we talk almost every day. But, yeah, it's, it's just devastating to think how many people don't know yet what they're going through. They for whatever reason?

Jackie Baxter  
Yeah, the media just needs to pick up on it more. It's also political. Everything is political, isn't it?

Speaker 1  
Oh my gosh, it is. It's not a binary outcome. It's not life or death. There's this liminal area between these i. Had someone ask me, Well, did you die? And I said, Well, not yet. And they kind of took a step back. We don't know. A lot of us feel like we're ticking time bombs. We don't know how long the fuse is. We have lost a few people months into this, like Jake and Jake just breaks my heart every interview I've done since he died on September 4. I don't care if I break down and just start crying, my head off, you. Keep that in there. Keep it raw, because this is exactly what it does.

Jackie Baxter  
Yes, yeah, yeah. People need to know Jake had

Speaker 1  
no prior medical history, sick in his life. He was only 40, but a lot of us in the United States, we think that we had this great economy going into this. People had jobs, and if you have a job, you have insurance and paid time off. How many millions of us were working in the gig economy, where you're not a regular employee, you don't have benefits? If you don't work, you don't eat, you don't get paid, and that's a lot of what I was doing. Archeology is a great job. It's not regular. It's not like you just show up with your shovel. Okay, let's dig some holes today. It's project by project. So staying home that long, I knew I would probably lose my home, and I did, but my neighbor downstairs was elderly, had COPD, and after going out to this clinic and exposing I don't know how many people, I was not going to give this to him, not for any reason. I really relied a lot on my friends during that time, they would come over and take out my trash, a woman who could not be more politically opposite for me, she came by every Monday with three boxes of really good groceries. She thought it was just all, you know, overblown and hyped up, but she still brought me groceries, and I really appreciate that so much.

Jackie Baxter  
Think this whole pandemic has brought out the worst in a lot of people, but it's also brought out the best in a lot of people as well. We hear more about the worst, so we always think, oh, everything's awful. And I think we have to remember that for every anti Vax who's just saying the whole thing is made up, there is a person who will bring you groceries and who will take out your rubbish. And

Speaker 1  
I wish we would see the unity that we saw in that first wave. I wish that we're still here. That's what we really need right now. And unfortunately, the numbers, the caseload, the spread that we're seeing now is far worse than anything we saw in that first wave. But people, they've got pandemic fatigue, which is, I don't know, as far as far as symptoms go, that is at the bottom of the list. I can't speak for any other country, but in the United States, we have people who've just said, Oh, I'm vaccinated. I'm just going to do whatever now. And this is what gets me the most. If you get COVID, your chances are fairly good. Of course, your kids might get it, your grandmother might get it, your friends. But what happens is that transmission carries forward, and it will kill someone you have never heard of, you'll never meet, and I'm not okay with that. You can't control you've really you have so little control over whether you get it because no one is watching out for you, the best you can do is to avoid spreading it. That's what gets me the most we all know what we should be doing to reduce the spread we all know and to wax religious a little bit here. I'm not a very churchy person, but there is a verse in the New Testament that really sticks out to me. Everybody knows the story afterward, but Luke 1029 says, And he, seeking to justify himself, asked Christ, who is my neighbor? That really sticks out, because the man knew the answer. He just didn't like it. And I think that's really what's holding true right now. We all know the answer. You don't need to wait for the CDC or for who to release guidelines. We all know what to do, but we're just so done with this pandemic that we don't want to do it anymore. That's heartbreaking. I mean, if you could save just one person, it's worth it,

Jackie Baxter  
yeah, exactly. It could be your grandmother, or your friend's grandmother, someone

Speaker 1  
you will never hear about, that that one life is worth it.

Jackie Baxter  
Yeah, you're right. Everybody's just fed up of it. It's been gone in forever. It feels like forever. But the same time, it's not over. Just because you want to go to a music festival. Yeah, I'd love to go to a music festival, but I'm not going to. I couldn't stand for that long, no,

Speaker 1  
wind up in bed for the next week with a massive headache. No? So,

Jackie Baxter  
yeah, we don't love to go back to normal, but there was a time and a place, and it's not now. Yeah, still in the middle of a pandemic, it's not over. Yeah,

Speaker 1  
we see what we want to see, and I realize it's a coping mechanism for a lot of people, because it is a time of uncertainty, very high stress, fear. When we face a monster in the dark, it's far different from facing a monster in the light. If we can face that monster in the light in a unified fashion together. I. Yeah, it's much easier to conquer, yeah, and everybody

Jackie Baxter  
just needs to do their bit. Wear your mask. When you go to the shops, it's not hard. And

Speaker 1  
that's another thing. We need to change the masking guidance that we have, because there are still people running around with the paper masks, the surgical masks. I love my cloth masks. I have a fantastic collection. One of our members is in Indianapolis. She makes the most beautiful things, but particularly with Delta and some of the other variants, we need to be focusing on having a mask that has a good seal on it and good filtration, and 95 whatever it takes make sure it has a good seal, because if there's any gap around your nose or mouth, that's a point of entry, and I throw one of my pretty masks on top of it, because, hey, you can access or raise anything. Can't you Well, without any hair to dress up, I have math so amazing. So

Jackie Baxter  
do you have any sort of mitigations, any guidance, or is it literally back to normal? Oh,

Speaker 1  
it is back to normal here. I'm sure the mayor of Kansas City, Quentin Lucas, is so sick of me coming after him. We've talked before on DMS through Twitter, that kind of surprised me. I'm very big on issues of homelessness, which is, hey, good for right now, because I'm homeless, but I was sort of on this case earlier this year. We had a very harsh winter. It's the worst I've ever seen. But there were two very large homeless camps in Kansas City that decided, we're done with this, and they unionized. One of the camps was parked right there in front of City Hall, and he came down from that ivory tower one day and sat at the literal picnic table with them and said, What can we do? So Kansas City housed 500 of the homeless and hotels for six months, and then after that, they had no plan, so it was more of a posturing thing. What's he going to do? I'm just one person Sure. I'm going to tag you. I'm going to respond to you. And he actually did. He sent me a DM one day, and I was like, Oh, cool. Okay, that gives me a little bit of hope. Here. Follow it up with more action. Tell the mayor, I said, blah, blah, blah. And he responded, this is Quinton Lucas. And I was like, Oh, well, just FYI. I campaigned for your opponent during the primaries. But give me some hope here. I'm sure he's very sick of me tagging him. Like, Hey, I know you're outside. Where's your mask? Where is your mask? You're around this group of kids right now. Where is your mask? Well, it's outside. That's nice. Where's mask? It doesn't matter. I know you are following this guideline, but you're kind of looking for that out anyway. You can't like that loophole. Lead by example. That's all I'm asking. Lead by example, because what people see when you do, this is what they're going to go out and do. Lead by example, you know the right thing to do.

Jackie Baxter  
I think a lot of the problem is that the authority figures that people follow, they have a lot of influence. So like you say, somebody not wearing a mask when they should, or suggesting that you'll be safe because of whatever it's given off the wrong message. And people in that position need to take that responsibility seriously.

Speaker 1  
And the nickname for my state, Missouri, is the show me state. You can tell me something. That's fine. I believe it. I see show me

Jackie Baxter  
just out of curiosity, and what is there for long COVID, say you go to your doctor. What happens?

Speaker 1  
Well, I did not have insurance until the end of November. I'm finally on Medicaid. I had COVID in March and again in October. So I went for two rounds of COVID with no insurance. And the second time I had it, we had a wave that was hitting and it Kansas City pretty hard. They were diverting ambulances from ers, and I would sit there. I didn't have pneumonia the second time, but I would sit there watching my oxygen saturations, and they say, oh, 95% or better. If it's below 95 go to the ER, and it would dip down into the 80s. And then, hey, 77 Oh, my God, 62 and I took pictures of all of this, knowing no one's ever going to believe me, but there wasn't anything I could do. Like, what am I going to do? Go to the ER, they're going to send me home. They're going to say, we can't we've got people over here dying. They're going to go on event we're trying to find beds, go home that. And if you go into an ER, I thought, oh my gosh, what else am I going to pick up while I'm in here? I can't do that, so I just stayed home and, you know, crossed my fingers, I hope I wake up in the morning. I was finally on Medicaid at the end of November, just in time for my first ER visit. Things had sort of quieted down, and I had tachycardia all day, one day, just sitting on the bed, like not doing anything. What's going on? Unfortunately, it was a Friday, so I called my doc, and he said, just go to the ER. And I said, No, what are you crazy? Just go to the ER. I said, Fine, but I got really lucky. The nurse who was assigned to me, she said, Oh, my daughter was in your son's kindergarten class. And I was like, Oh yeah, your daughter, she's great. And because of that, she took me. Very meticulous notes. She believed me. She had never heard of long COVID, but she believed me. And because of that, the doctor, when he came in, he said, I I believe what you're telling me, and I see this, but we're not seeing anything on imaging. I said, No, I understand that. I wasn't expecting you to see anything the acknowledgement, but they believed me. That was big. Yeah, so have you basically

Jackie Baxter  
just been left to do it yourself ever since? Really much

Speaker 1  
I did start seeing cardiology, and I went in to see the cardiologist, and he did do a two week culture monitor, where they put the little thing on your chest, and it monitors everything. Anytime there's an event, there was an app on the cell phone they sent with it, and I just tap in and say, This is what I'm experiencing. And there were plenty of events that picked up, but it wasn't anything that they could do something with. So he said, Well, just try to keep your anxiety levels low. And I said, Excuse, you stop right there. Don't ever tell a long holler, anxiety. I don't care what your context is, don't I was very polite in my email, and they came back with a longer email. Oh no, that's not what we meant. And I thought, blah, blah, blah, yeah, right. So they did an echocardiogram, and there were several things that were they didn't really stick out to me as concerning, but I've seen them on the echocardiograms of almost every other lung hauler. So I asked him, Please, can you take this and mind you, I have done medical transcription for 25 years. I've seen a few echocardiogram reports except type them in other radiology reports. What happens is they'll list these findings in one part of the report, but they don't put them down and the impression the part that everybody reads all they say at the bottom is normal. And I told my No, you need to take that and note it down here. Well, it's not really. I am not concerned about it for me personally, I know there's nothing you can do. It will probably resolve over time. You need to put it down here. And I wasn't getting anywhere with him. I never said, You're fired. Go away. I just went to one of his colleagues. It's a very large practice, because I've known this guy for 10 years. His wife and I are very close. And I said, Hey, who in your practice is the most meticulous note taker? I need that person, and that office actually called me right away and said, When can we see you? I said, Hey. Oh, now quite that fast, but that doctor came on and said, How can I help you? And I explained to him, I'm not concerned about this right now, but this is what you need to know. Number one, this is happening to a disproportionate number of long haulers. Number two, I just want you to put it down here, slap an ICD 10 code on it, so that way it's noted and look for this and more of us, because this is important. And he said, Okay, that's all I needed. Because

Jackie Baxter  
sometimes it's the little things that they get picked up, and enough people, someone will go, oh, and that is important. Yeah, it's an

Speaker 1  
inflammatory process in the heart. I had some it's common to see minor regurgitation and some heart valves during normal times. We are not living in normal times, and I've seen varying degrees of this regurgitation where some of the leaflets and some of the valves are also inflamed. And then it becomes a little more serious. But even then, they're being written off as normal. This is not okay,

Jackie Baxter  
I think as well, normal is quite a big area. Yeah. You know, someone says, Oh yeah, you know, your blood test is normal, but it might be at very bottom edge of normal, which would be useful to know, or

Speaker 1  
are there things that are actually outside of that normal range? Well, it's just barely outside. Hey, you know what still noted anyway? This is important.

Jackie Baxter  
Yeah, exactly. The more you know, the more you can maybe do something to help or find something. Exactly. We'll be right back. Hey, there. I'm just jumping in for a second to see if you're enjoying this episode. If you're finding it useful, maybe you would consider sharing it somewhere, a friend, a group, or even on your Twitter feed. If everyone was able to share just once, we'd be able to get this information out to even more people who really, really need it. So please consider sharing somewhere if you possibly can. I hope you enjoy the episode, and thank you so much.

Speaker 1  
Every piece matters, even if it seems like a minor piece. Well, if you put the puzzle together and you're missing that minor piece, your puzzle isn't done.

Jackie Baxter  
Yeah, but then a lot of people actually aren't able to notice those things and understand because they don't have medical knowledge or because they're too ill. The medical professionals should be doing that,

Speaker 1  
and I certainly am not going to knock any medical profession right now, because, oh my gosh, we have people in the medical profession in the United States, they're leaving in droves. I. I have a lifelong sleep disorder. I thought it was normal growing up to just not sleep or maybe get a few hours at night. Blah, blah, blah. I remember, I love astronomy, but I remember lying awake at night when I was eight, being so terrified by the thought of infinity, like, if you could just drop forever. Oh my gosh, I didn't find out until later. Oh, people actually really do sleep how does that happen? And I finally, after years of searching, I finally came across a wonderful sleep med physician who left the practice over the summer, because most sleep med physicians are pulmonologists, and now I'm stuck with this guy who told me last month. Well, it's intractable. There's nothing we can do. Just learn to live with not sleeping. So that was very

Jackie Baxter  
helpful. That sounds kind of counterproductive.

Speaker 1  
Yeah, yeah. So I'm on the search. If you are listening to this and want to take on the impossible case, please call me. You never know.

Jackie Baxter  
So looking forward, I mean things, are not looking good at the moment. We're heading into winter. Case numbers are massive. Are you expecting more restrictions to come in? What do you think should happen? Well, optimistic

Speaker 1  
me says, please. Realistic me says, Good luck with that. The one thing struck me the other day, thank God, Delta hit over the summer, because if it had hit over the winter, over the holidays, oh my god, I just can't even imagine it was bad enough over the summer. And we don't know exactly what variants are going to come forward next. I think if I could get people to realize just one thing, one thing, if I could get one message across, if you think you have symptoms, if you were exposed, if anything, 14 days is not a big ask. Stay home, even if your test is negative, stay home. 14 days is a tiny, a tiny thing you can do, because even

Jackie Baxter  
if you just have symptoms of a cold, it's not COVID, still, don't give a cold to all these people who are already ill or already at risk, exactly.

Speaker 1  
Thank you. Yes. And as we go into the colder season where we have, you know, the heating systems kick on, and of course, a lot of these are airborne. Just stay home. Don't do this to one other

Jackie Baxter  
person. And if you have to go out, put your mask on a good mask.

Speaker 1  
Don't just stick that cloth thing. Make sure there's a good seal. Nobody wants your germs. Thank you. We all, we all have germs. Keep them to yourselves. I mean, it

Jackie Baxter  
makes you think, why were we not wearing masks if we were ill before? Well,

Speaker 1  
other parts of the world were we just thought, that's weird. Why would you do that? Well, now we know, yeah, I'll just get that

Jackie Baxter  
cold. But actually, yeah, if you have a cold, you shouldn't be going out in public, but if you have to, then be considerate. And maybe this has taught us something.

Speaker 1  
I hope so. And of course, there and again, in the United States, we just don't have the social supports. A lot of people have to go to work. They have to, otherwise they wind up without food. They wind up without shelter. Believe me, I understand that. Been camping in the woods for a while. Now I understand it, but do your best not to spread anything.

Jackie Baxter  
Yeah, a lot of the problem is people feel they have to work. When I

Speaker 1  
feel that, I really feel that. And if worse comes to worse, just realize, even if there isn't a government supported network to help you, it is okay to reach out for help. Tell your friends, if you go to church, tell your church. You would be amazed what people will do to support you through this. People will, they will. Some people are going to be jerks about it, and that's okay. Ignore that. There are people

Jackie Baxter  
who will help. I think people don't like asking for help. I don't, you know, I like to do things myself. I'm, I'm a bit of a control freak.

Unknown Speaker  
Oh, you sound truly American.

Jackie Baxter  
I've learned that there are so many things now that I can't do for myself. I have to rely on my partner to do all of the housework, most of the cooking, you know, and that's with me not working. I don't like it, but I've kind of had to get used to it and yeah, don't feel bad about asking for help. Reach out for support as well, even

Speaker 1  
when you feel helpless and hopeless. Someone said something the other day that really stuck with me. He said, each of us has a tool in our hands, no matter how bed ridden you are, no matter what. And at the time, he said that I had this in my hand. And I said, You are exactly right. This is the best tool. This cell phone is the best tool I could think of. It's amazing what you can do. I did an interview with Ohio Public Radio that was over zoom. Think the world of this journalist. He is so solid, but he. Asked me, How are you doing this? I said, Jeff, you see me sitting here in bed? He said, Oh,

Jackie Baxter  
okay, fair enough. Yeah, there are things that we can all do exactly.

Speaker 1  
It may seem like just a Facebook post or just a Twitter post, but as you're scrolling, you'll see people who need you. There's something you can do, even if it's just emotional support, to be like, Hey, I see you. That may be exactly what they need.

Jackie Baxter  
I know what you're going through. I had those feelings too. This is what I did. Yeah,

Speaker 1  
we, all of us, has some kind of tool. No matter how low at the bottom we feel, there's always at least one tool we can use.

Jackie Baxter  
And the power of support, like support groups, yes, so, so important. Yeah, there's this power in numbers, yeah, and campaigning, too. I dabble

Speaker 1  
in it a little bit, but, and that's that's another thing with all these disparate groups, everyone has sort of found their niche, and it feels like this year is the year we have taken this and run with it. And it's just amazing to see Ed Young. Did I think one of the best articles on long COVID So far last month. And I think the world of him as a journalist, he's he got a Pulitzer last year for his COVID coverage, well deserved, but he somehow wound up in my DMs. And I was at first I wanted to say, How'd you find me? I shove other people in front of cameras. What do you want? We talked just about the socio economic issues of long COVID that impact. We didn't talk research or diagnoses or treatments. This is the one thing no one's talking about. And I just, I really appreciate all the work he's done in all of the journalists, even if it's just a story to fit a certain headline, each story matters, because if we had no coverage of this, no one would know. It would just be us screaming by ourselves. It's

Jackie Baxter  
been so nice to talk to you and to get a slightly different perspective on it as well. Oh, thank you so much, Jackie. I know all about how things are over here in Scotland and in the UK. I mean, England is different in some ways, but it's a totally different setup for you. Yeah,

Speaker 1  
hi. We're the dumpster fire across the pond. Nice to see

Jackie Baxter  
you. Oh, well, you'll be able to see ours as well. We're burning away over here. Yay.

Speaker 1  
Oh, I do. My TV actually has Sky News as part of one of the channels that I pull up. So yeah, I see what's going on over there.

Jackie Baxter  
Yep, still burning away. Oh, thank you so much. And all those things that we've talked about, I'll put links in the show notes. Thank you so much to all of my guests and to you for listening. I hope you've enjoyed it, or at least found it useful. The Long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to please go to buy me a coffee.com. Forward slash long COVID pod to help me cover the costs of hosting the podcast. Please look out for the next episode of the long COVID podcast. It's available on all the usual podcast hosting things, and you get in touch. I'd love to hear from

Unknown Speaker  
you.

Transcribed by https://otter.ai