Becoming Your Own Disease Detective

What happens when a medical professional becomes the patient? Melissa Marquis—a nurse with over 25 years of experience in emergency preparedness—shares her remarkable journey from healthcare provider to autoimmune patient after being diagnosed with limited cutaneous systemic sclerosis following a frustrating 10-year search for answers.

Drawing from both her clinical expertise and lived experience, Melissa offers a unique dual perspective that bridges the gap between medical knowledge and the reality of living with chronic illness. Her story resonates with anyone who has felt dismissed by healthcare providers or struggled to connect seemingly unrelated symptoms into a coherent diagnosis. Despite facing significant health challenges affecting her heart, GI tract, and other systems, Melissa demonstrates how determination and self-advocacy can lead to both answers and purpose.

The conversation explores practical daily management strategies—from heat therapy to Epsom salt baths—that help Melissa navigate her symptoms. She shares insights from her book "Invisible: A Nurse-Turned Patient's Resource to Living Well with Autoimmune Disease," which emerged from her desire to create the comprehensive resource she wished she'd had during her own diagnostic journey. The book combines medical education with practical tools for living well, making complex information accessible to patients at any stage of their journey.

Beyond medical advice, this episode delivers a powerful message about finding meaning amid suffering. As Melissa beautifully states, "I've found purpose in my pain, and I encourage others to find theirs as well." Her approach emphasizes becoming your own "disease detective"—understanding your condition deeply while remaining open to both conventional and complementary approaches that might bring relief. This balanced perspective, coupled with her emphasis on humor, connection, and self-advocacy, offers a blueprint for thriving despite chronic health challenges.

• Melissa: https://www.instagram.com/mmarquis78?igsh=MXFwYzlyZ2t3dnVqbg==
• Book: https://covenantbooks.com/books/?book=invisible

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Chapters

• 0:18 Introduction to Melissa Marquis
• 3:08 Early Nursing Career Lessons
• 13:36 10-Year Diagnostic Journey
• 19:43 The Book for Autoimmune Warriors
• 26:44 Advocacy and Daily Management Tools
• 40:28 Finding Purpose in Pain
• 50:42 Advice for Healthcare Providers

Transcript

Speaker 1: 0:10

Welcome back to my Spoonie Sisters. And today's guest is Melissa Marquis, a nurse with over 25 years of experience and emergency preparedness. Diagnosed with limited cutaneous systemic sclerosis and that's a mouthful. After a 10-year journey to answers, melissa now uses her unique perspective as both a healthcare professional and patient to empower others. She's also an author of a powerful resource for the autoimmune community, blending education, real patient stories and tools for self-advocacy. Despite her own challenges with multi-system disease affecting her heart and her GI tract, melissa continues to inspire by showing how we can adapt, advocate and live fully. Well, hello, it's nice to see you, melissa.

Speaker 2: 0:57

How are you? Oh my gosh, this is wonderful. Thank you so much, Jenny, for having me. Really appreciate the opportunity to share just a little bit about my journey and a little bit about the book and how it can help people. So appreciate it.

Speaker 1: 1:10

Thank you so much. And today we are joined with a wonderful volunteer co-host today, Hi Steve.

Speaker 3: 1:16

Hey Jen, how are you Looking awesome?

Speaker 1: 1:18

Thank you. You too, I'm surrounded by greatness today with you both. I wanted to do an icebreaker. This is one of my fun favorite things to do lately, melissa. What's one small joy in your daily routine that always makes you smile, even on those tough days? I?

Speaker 2: 1:34

think, and I was looking at them yesterday and I just happened to have a one of those sort of divine moments I felt, where I was having a bad week and not feeling good and you know, you get in these slumps every once in a while and you kind of feel down in the dumps and like woe is me type of an attitude a little bit, and I try not to get like that, but every once in a while you kind of feel down in the dumps and like woe is me type of an attitude a little bit, and I try not to get like that, but every once in a while it just hits you.

Speaker 2: 1:57

So I had to go out to the store and there was an individual that was definitely in need of help. He wasn't asking for it, but you can very clearly tell that he needed help. So I purchased a few things at the store for him and I brought it over. And just the sheer astonishment on his face of this simple act of kindness, it just turned my whole day around. It was that instant little things, those little moments of happiness and making somebody's day feel a little bit better.

Speaker 1: 2:28

Absolutely, and those little things have such a huge impact.

Speaker 3: 2:32

I think they go beyond just general philanthropy. When you have a ton of money, it's the small acts where you connect to that person eye to eye. That's when it goes deep into your soul and maybe it does the same thing for them.

Speaker 1: 2:45

Yeah, I agree. Now, melissa, your professional background. It's extraordinary. Can you take us back to your early days as a nurse and share how that work prepared you for navigating your own autoimmune journey?

Speaker 2: 2:59

I've been a nurse for now 26 years. I'm actually no longer practicing in a clinical setting. I changed my career actually right around the same time that I started to get sick. But I still took a lot of lessons from my career working as an inpatient nurse, I think, at least in my experience. I worked in a busy trauma like a trauma center level one trauma center. I worked on a pulmonary medical floor taking care of a lot of very sick patients. I saw a lot of heartache, obviously a lot of sickness and probably a little bit too much death.

Speaker 2: 3:33

Early on in my formative years I was just out of high school and obviously I went to nursing school. So just, you know I was early twenties. You know, here I am, you know, taking care of patients, you know, who are really, really sick. I really had, you know, a nice childhood. You know I didn't. I didn't really experience anything like what I was throwing myself into as an early 20-something, you know, recent college grad and everything. So I think every patient that I interacted with taught me something important.

Speaker 2: 4:03

And early on I connected very closely with a group of patients that had cystic fibrosis and if you don't know anything about the disease, it is a chronic lifelong disease. It is generally, almost always fatal. Unfortunately, there is no cure for it. Although they're getting closer and closer these days, there's been a lot of new advances, which is wonderful. I think it was probably due to my own age at the time and the age that they were as coming in, because life expectancy at that time was still in the 30s, so they were also quite young.

Speaker 2: 4:35

I connected really well with them so I got to see very early how young adults deal with this type of chronic lifelong illness, life-threatening and life-altering. Many of them chose not to get married or couldn't get married, couldn't have children, you know, didn't know what kind of career or if they could have a career Like. There's just a lot of things impacting that. I was fortunate in that. I think, looking back now, having had some made some really good connections with those types of individuals where they taught me as much as I taught them, if not more, that really made an impact. Yeah, watching patients deal with what's happening within their lives and then sort of also watching how the families are reacting to the news and what does that support system look like and how is that going to affect, positively or negatively, the patient's outcomes. Those are, I think, probably the key pieces that I took away from it.

Speaker 2: 5:33

I was also fortunate, very early early in my career I was probably a brand new nurse and maybe I might have still just been a CNA at the time, I don't recall now, but it was a very long time ago took care of a patient that had scleroderma and she was in her early 30s, married with two kids, two small children. She was at the end of her life. I took care of her for four hours and that was it. For whatever reason, she has always stuck with me Just to see somebody so young with a disease I had never heard of at that point, and how they as a family unit, how they were managing it. It always just stuck with me. Now that I have the same disease, it's like you know, she's always on my mind.

Speaker 3: 6:14

Let me ask you this because I worked in the medical field as well. I was in the clinic for maybe 10 years, then I was in sales for another 10, 15 years Worked at Children's Hospital here in Oklahoma. We saw every exception to every medical rule that will ever walk through a door. Seriously, it's the only Children's hospital in Oklahoma, so they all got funneled there ended up being a level one trauma center, like you were at. So do you feel like you harbor any PTSD from that time? Because I know I do from some of the stuff that I dealt with.

Speaker 2: 6:43

I don't know if I would classify it as PTSD. Certainly there are patients that I'll never forget and stories that I'll never forget. Maybe it's just my personality, but I always like to think I'm an optimist and I look at whatever situation I'm in and try to find the positive out of that, although as I get older I'm much more of a pessimist, but I still try to find the positives even still. But I guess I tend to think of those instances and you know the interactions that I had with these patients that there was something for me to learn out of it, either then or now. Certainly there's cases that have broken my heart. I wish had never happened, but that's not for me to change the outcomes.

Speaker 3: 7:27

Right, well, I mean to improve the outcome of their ability to survive, of course, but yeah, Steve, you took the words right out of my mouth and asked the question. There goes the wind out of your sail.

Speaker 1: 7:41

It's like you read my mind, because all I could think of is like how in the world could you deal with this emotionally?

Speaker 2: 7:46

I can tell you a quick story. On a couple of occasions I said I worked very closely with the CF population and one of my favorite things to do for them was to talk about end of life issues with them. Maybe I'm an old soul, I don't know, but I have never been uncomfortable with the topic, even in my 20s. And again, I had no experience with it, so I don't know how I was comfortable with it. It had to have been just a gift that I was just blessed with. But I would take them outside, especially close towards the end of their life.

Speaker 2: 8:19

If they were really struggling, I'd pick them up, I'd put them in a wheelchair, I'd take some blankets with us, their oxygen, and I'd take them outside if it was a nice warm day, and would go lay in the grass outside, kind of away from all the noise and everything, just looking up at the sky and letting them open up and sort of just I left it totally up to them.

Speaker 2: 8:40

Let them try to, you know, be the dictator of what we were going to talk about, if they wanted to talk at all. It was inevitable. As soon as they look up at the sky and they look at the clouds, that's exactly where their mind goes. What's up there, what's next, gives them the opportunity to share their feelings, how they're feeling and how scared they are, or are they scared, or what are their beliefs, and those kinds of things. So maybe that made it easier for me to be able to connect with them on that level. Obviously, I didn't do it for every patient that I ever took care of, and even all the CF patients, but there was a small number that I did that with and it was obviously had a profound impact on me as well.

Speaker 3: 9:19

Even still, I'm getting those same questions from my mom right now, who's 88. She's got dementia and only recently she forgot how my sister and I were related. So she's gotten to that point, that stage, and she's starting to talk about the afterlife, like what happens. I've always been deeply spiritual religion, religious, if you will and I started, as Pentecostal did, baptist Church of Christ. Now I'm Lutheran. I mean, I sampled pretty much everything except the extremes. And I just keep telling her you know what, when it comes number one, you're never going to know. Right, it's just going to happen.

Speaker 3: 9:56

And I've been knocked out on multiple occasions where I should have died, could have died, but didn't. And it's just. I mean, you know, it's a snap of the fingers and you're where you're going to be. So I tell them the only thing that I worry about personally is burning to death and drowning. Anything else I say. Bringing on bleeding to death is just a slow going to sleep right. Freezing to death, same thing. But the other two extremes you're fighting, you know. So my only two caveats to dying. Everything else I can handle, not to get all dark and gloomy.

Speaker 2: 10:31

I know that's an interesting turn to take, but yeah, yeah. I mean, everybody has these thoughts, you know, and I think at some point in our life we have to acknowledge them. It's?

Speaker 3: 10:41

a circle of life.

Speaker 1: 10:42

They're real thoughts, they're real fears. Well, absolutely, I think it's important that we think about it and we talk about it before we have to actually be in this situation. My parents they gifted me one year for my birthday, Executorship for Dummies the book. Okay, Thank you.

Speaker 2: 11:01

Congratulations.

Speaker 1: 11:04

I bet it's coming helpful, though I'm still looking forward to this in my future. And then they were talking about you know they help with an orphanage in Haiti, and so talking about that and wanting to know if I wanted to take that on, and I nicely said you know, this is way out of my wheelhouse and I think you need to look further for someone better, like it would be awesome to see your work continue, but I'm not the one. Yeah, but yeah, we need to. We need to think about all the steps leading up. You do.

Speaker 2: 11:31

You've got to be able to face your own mortality and what comes with that.

Speaker 3: 11:37

I had a conversation with my son the other day about funerals. I don't know how it came up. They were talking about my mom and I said, yeah, I've. I said I've got a list of the people that I want as my pallbearers. He goes well, that's really morbid, dad, and I said no, it's not because these are the people that I want to carry me to my last rest versus somebody else that thinks this person should be that person, right, and so it's just that preparedness and it's not morbid as much as it's just like I want to ease that decision that you're going to have to make by making that decision for you Exactly.

Speaker 1: 12:10

It's really important. We're all in that age group. We need to be talking to our parents, our siblings, figure out who needs what, who's expecting what of us, and we need to figure out what we want and need. Yeah for sure, you experienced a nearly 10-year diagnostic, if you will, before getting your first diagnosis. What kept you going during that time of uncertainty and, of course, frustration?

Speaker 2: 13:04

Yeah, so, as you said, almost 10 years to get the diagnosis of undifferentiated connective tissue disease. So it was very much a diagnosis of exclusion and, really, I felt, one that many providers don't agree with or don't recognize, and I still kind of hold true to that, based on just interactions that I've had with people. I knew, though, as happy as I was to finally get some answers, I knew that wasn't going to be the end of my journey or the end of my diagnosis list, and in fact it's grown quite substantially since then. But after getting that initial diagnosis, I continued to fight because, like I said, I knew that that was not it. I knew almost from day one.

Speaker 2: 13:50

First symptoms I developed was Raynaud's, which is very common in patients that have scleroderma Only more than 90 to 95% of patients have it and if you don't know what it is, it's basically a vascular abnormality of your hands primarily, can affect your feet and parts of your face as well. In response to cold or stress, you lose circulation, so they get very cold, painful, they turn colors, and so that was, like my first, one of my first symptoms, and so I knew what it was, I knew what it could lead to and, again, having had taken care of that one patient in my early days, it clued me in pretty quickly, and so I just kept searching for answers and I kept searching for doctors that would listen to me and believe me. And I had, you know, several other symptoms at that point, just really kind of random. It didn't make sense to me because I couldn't connect them. You know, and I think a lot of patients feel that way with autoimmune disease. You know, one day it's your joints hurt, then the next day you've got fatigue, and then the next day it's some random thing that's swollen, you know, and it's just what is this? This doesn't make sense. And then your GI tract is all messed up and it's like where are we going? What's happening? So I was really persistent, I wouldn't take no for an answer, and so I kept searching for different doctors and around a couple of years into that initial diagnosis, I started to have some worsening symptoms where it was affecting my internal organs, primarily my GI tract, and so I thought, okay, well, I need to tell the doctor like we need to investigate this, because this is out of character for me. And so we started looking more into scleroderma-specific studies and testing and it ultimately ended up leading me down to Yale, which is where I go now They've got a new scleroderma program for the state there and pretty quickly into.

Speaker 2: 15:47

You know, really, from my first visit there the doctor agreed that I had all the signs of the limited systemic sclerosis. It used to be called CREST, which is an acronym, and my only challenge then was I had been testing basically negative for all the basically rheumatologic lab values that typically are positive in patients with scleroderma and were always negative. So I always had a negative ANA, which is highly unlikely. 95 to 99% of patients have a positive ANA and for 12 years I never did almost 13 years and so I was extremely rare in that. So they were really kind of reluctant. But I think you know, going back to your question, I feel like what kept me going was my tenacity and trusting my gut and knowing this, I'm not settling for an I don't know answer, or here we'll just throw this random diagnosis at you, and maybe you'll just throw this random diagnosis at you and maybe you'll just kind of be quiet and go away, cause that's kind of what I felt, like you know was happening, and so I just kept fighting and I I wouldn't take no.

Speaker 3: 16:50

So yeah, Good for you. I mean, you have to be your own advocate out here, because nobody's got your back and they want to get you through, to get to the next patient. To get to the next patient. I mean, it's a matter of numbers to them.

Speaker 2: 17:02

Yeah, unfortunately.

Speaker 3: 17:05

Yeah, and I mean that's what I mean when you talked about it being one thing, then another, then another. I didn't know until I went back to see my neurologist that and he was looking at my like, underneath I have this light skin area and he goes, yeah, vitiligo. And I was like what's that? And he goes that's the Michael Jackson, the discoloration, right, you lose pigmentation. And he goes that's pretty common. I said how is that common? He goes. Well, when you have one autoimmune disease arachnoiditis you're prone to all these other things that are just going to fall like dominoes. And I was like, oh great, you know. I mean, not only did I get a horrible diagnosis to begin with, I get the bonus wheel and I get to spin every day and what's it going to land on? Right, crazy.

Speaker 1: 17:47

Yeah, that's a really good point. And so, Melissa, this, I mean this started a long time ago, but how many diagnoses have you had since then?

Speaker 2: 18:01

The two official rheumatologic, so the undifferentiated. I still carry that diagnosis in the scleroderma. My current doctor tells me that it's more like an overlap disease With scleroderma. It is common, like many other autoimmune diseases, to have multiple autoimmune disease. It's just because your body keeps attacking itself. It doesn't know when to turn itself off. It thinks that your cells are foreign. It's just going to keep going until you can suppress that. So I have symptoms of Sjogren's, I've got symptoms of Ehlers-Danlos, but I don't meet criteria for any of them just yet. I did test positive recently for an early Sjogren's panel, one of their tests, which I think it was a new test that came up. So I'm not sure you know, and I've asked her several times and she's like well, you know what's another diagnosis? At this point we already know that you're symptomatic, so it doesn't, our treatment's not going to change based on just adding another title to your list. So I understand that and it's you know. It is what it is. But so at this point those are my rheumatologic.

Speaker 2: 18:58

I've got several other significant problems related to the scleroderma. So it is a systemic disease. So it causes, as I said, a lot of internal damage as well. So I have severe GI disease, slow motility, GERD reflux. My esophagus doesn't contract well so swallowing is difficult. I have recurrent small intestine bacterial overgrowth, which is extremely problematic for me. It's recurrent, I can't get rid of it ever, and so it's a nightmare to deal with. I've had pancreatitis 13 times, including this week, In the last two years, no known cause. I have new cardiac disease related to the scleroderma, so we're still trying to nail that down, and I have some evidence of pulmonary involvement, but we're not sure if it's related to the scleroderma or if it's just something else. That was kind of an incidental finding. I tend to have a lot of those incidental findings the more I get scanned. Yeah, so, yeah, that's the short list.

Speaker 3: 19:58

I got to jump in here for a point of levity. As I'm listening to this, I'm thinking what if there was a dating game for chronic illness? People right, and you're talking about all this stuff like, oh, I only have this, and then here comes this laundry list of other stuff. It's just like man, you know.

Speaker 2: 20:11

Right, swipe right if you have this.

Speaker 1: 20:13

Yeah, I don't know if it's an actual app, but I know it's an Instagram and I know it's an account that I'm familiar with, because they were not diagnosed. They were up for an award at the same time that I was last year and I think they might have won an award too.

Speaker 3: 20:27

I don't remember.

Speaker 1: 20:29

But if I could think of the name, I wonder if I still have it on here. I don't remember the name of the app or the program, or whatever it is.

Speaker 3: 20:37

I do know there's like a disabled dating app so you can go on there and you're wheelchair bound, you're a walker, me I'm forearm crutches and a couple of AFOs. But man, I mean, what kind of advertisement are we putting together? You know, I know, how do you advertise all these things? It's like ugh.

Speaker 2: 20:59

It's sad but it's funny. You have to find humor in all of this, because otherwise you just go down some really dark rabbit holes.

Speaker 3: 21:06

Yeah, and that's how Jen and I connect, through humor. I mean, despite all the stuff, man, if you can find a reason to laugh, you can find a reason to go on and inspire other people that are in a worse situation by comparison.

Speaker 2: 21:20

I was just on Etsy I was looking for some scleroderma awareness t-shirts. So I'm organizing a walk in a couple of months and so I was looking for some cute t-shirts. And you know some of these shirts, they're hysterical, you know. It's like kind of like they're memes but placed on shirts and they're just, you know, kind of like trading cards of autoimmune disease. You know that kind of a thing.

Speaker 1: 22:04

Well, I don't sell t-shirts, but if you ever need to design, I will happily make you a design. It's one of my favorite things to do for people. I do sell stickers on my Etsy shop and magnets, but t-shirts no. But it's so much fun just to design them.

Speaker 2: 22:25

And so.

Speaker 1: 22:26

I love making things for people and being like, okay, run with this, make this into something. I want to see it be something cool, so that is awesome. I'll definitely keep that in mind, thank you. Have you done any genetic testing or the sequencing?

Speaker 2: 22:32

Yeah, I did do that a few years ago, which is so my doctor was. All of my doctors actually have been fascinated by my hands. I have very long fingers and toes, so there's a part of Ehlers-Danlos, there's a subset of a Hypermobility. Yeah, there's a subset or a variant of that disease that causes something called Marfan syndrome, which affects individuals that are very, very tall, like seven feet tall, like super tall I'm not. I have short stature, so it's ironic that I would have very long fingers and toes. But so she wanted to rule that out because she was concerned I've had some cardiac findings and different things. So I did do the blood work and I'm negative for it, all other than the short stature gene that they found, which I was not at all surprised by.

Speaker 1: 23:19

So, yeah, I do recommend looking into sequencingcom. They are amazing and I just got my sequencing back not long ago and I'm getting new reports constantly and it's super fascinating. Yeah, and it's actually lined up with some of the things that we've thought and wondered about that I wasn't tested for before. Oh, interesting. Okay, my daughter. They think she has some kind of mixed tissue, connective tissue. Okay, my daughter.

Speaker 1: 23:45

They think she has some kind of mixed, mixed tissue, tissue, yep, and I'm a carrier for ellers danlos. I'm also a carrier for lupus, but I don't have them. But I do have ra and I am a carrier for ra as well, and there's a few other things that I'm a carrier for and I'm like oh yay, sorry daughter. Yeah, I know that's so. She's got kind kind of some autoimmune soup going into her DNA and I feel really bad about that.

Speaker 3: 24:04

Yeah, it used to be. My biggest worry was going bald. I worried about that genetic trait being passed on, going bald. Now it's like, oh no, there's so much worse.

Speaker 1: 24:14

Yeah, can we just go back to when we were young and those were the kind of things we worried about, right? So, melissa, you said you were short statured. How tall are you?

Speaker 2: 24:25

I'm actually 5'4", so I'm the taller one in my family. My sister is about. She says 4'11". She's actually a little shorter than that, but she stretches it a little bit. And I do have some other family members on my dad's side of the family that are not I wouldn't classify them, as you know, dwarfism or you know whatever the more politically correct term is these days. But they definitely are, you know, in that like four, four, nine and up. You know height range.

Speaker 3: 24:56

I think you can be considered disabled at that height, I believe because of short stature.

Speaker 2: 25:03

Yeah, well, it does. It impacts things for sure.

Speaker 1: 25:05

Yeah, you know just driving, how high can they consider it?

Speaker 3: 25:08

I think, it's below five feet, if I'm not mistaken.

Speaker 1: 25:11

I was going to say I'm 5'2 on a good day.

Speaker 3: 25:15

I can hump over a couple of inches.

Speaker 2: 25:16

When your back is nice and straight, that day, when you're not having pain, Well, I'm technically like 5'1 and three quarters.

Speaker 1: 25:23

See, that's my sister. Yeah, she's. Yeah, it's that three quarter mark. So I always argue with my husband and I'm like, okay, fine, I'm 5'2 on a good day If I really stretch it out Exactly. All right. So you have this book, I do. What inspired you to take on the huge project of writing a book for the autoimmune community?

Speaker 2: 25:43

I think there was a lot of things that went into it, but first and foremost it was the length of time it took to get an answer for me and to get doctors to believe me. I know the medical field, I know how to navigate healthcare, I know how to advocate for myself and ask the questions and communicate well with my practitioners, and yet I still couldn't get an answer. And that was incredibly frustrating for me and I thought shoot, how do patients do this that don't have that background, don't know how to advocate or are not strong in it, because they're shy or they're afraid to ask questions or come across as questioning the doctor, because a lot of patients fear that, especially people that are older. And so it just amazed me also that, as I'm going through this diagnosis workup stage, as I said, my symptoms were kind of wide ranging and all over the place. You know, I couldn't, I couldn't find a connection point to them. And so how do you Google your symptoms and try to find a medical answer for something that say okay, I've got joint pain, I've got some nodules growing on my skin, I've got Raynaud's, I've got fatigue, like here's, eight different things that are very different, very random and oh, by the way, they can all be attributed to other illnesses. It's like you cannot nail that down or narrow it down, and so that was just exceedingly frustrating for me.

Speaker 2: 27:13

And again, I know how to research, I know where to look for answers, and I still couldn't find a single resource to use, and so I thought, okay. So I didn't really come up with the idea for the book until really just about two years ago, and it was again another one of those kind of divine intervention moments for me where I had a few years before that day that I decided to take on this adventure, I was listening to another podcast with a couple of authors and they were talking about the process of writing a book and I thought, well, that's kind of interesting. I wonder, I like to write, maybe I could do that someday. And I thought, well, shoot, I don't know what I would write about. I don't really have an interesting life, kind of boring. I think we all say that we all say that we probably do.

Speaker 2: 27:56

Not necessarily true, though I know. Yeah, exactly. So I'm like, all right, well, we'll shelf that idea, maybe in the future when something, some bright idea, comes to me. Well, fast forward about three years or so. I had just finished reading my Bible in the morning and I was just kind of praying and just kind of meditating a little bit, and I had this sense about me of you do have something important to say. And instantly, within 30 seconds, I had the name of the book already identified. I knew exactly what I was going to title it, and then, in about a half an hour's time, I had the entire structure outlined, every chapter, and so I just I knew, okay, this is absolutely not for me. There's no way I could have created this in such a short time period.

Speaker 2: 28:40

And so I wanted to be able to provide a resource filled with both clinical information, education, common labs, types of testing, all the different pieces that go into the sort of workup and treatment phases of an autoimmune disease, and then I really wanted to focus more on the living with it aspect. What does your day-to-day life look like Now that you've been diagnosed? You've got some answers maybe not all of them, but some. Where do you go from here and really wanted to be able to provide tangible resources and things, tips and tricks and hacks whatever term you want to use all the things that I have learned just in my own life on what has worked and what hasn't worked for me for different types of symptoms, and so I wanted to be able to kind of put that out there for people, because that was one of the things that I really struggled with is identifying what is a flare. What does that mean? When somebody says I'm flaring or I'm in a flare, or this flare won't go away, what does that actually mean? So, like providing that medical education but then follow it up with these tangible tips on. Here are some strategies that you might be able to utilize, either individually or in tandem with one another, on managing those symptoms and alleviating some of those symptoms. You know you might not be able to stop the flare, but you can at least help to reduce some of it and learn how to identify what triggers set them off in the first place.

Speaker 2: 30:09

Exactly so like there's very little resources, at the time when I was researching, I had a really hard time finding things, and maybe because I was a little bit more focused on just looking at the medical sites for that information because it just didn't exist. There's nobody talking about that on the medical sites. Obviously, there's a lot of blogs and there's a lot of podcasts that do share that information, and at the time I really hadn't gone down that road yet. I was looking more for true, you know, hardcore medical info and couldn't find it. And then so, once I started to kind of put that together, I'd come across a number of different podcasts and bloggers, authors that really have helped to shape how I view my own illness, and I've incorporated a lot of their strategies into my own and really kind of identifying personally what works for me and again, what doesn't, and recognizing that what might not work for you at one point don't throw it away entirely, because there may become a time where that same strategy might work two years down the line, five years down the line, and so just, you know, keeping an open mind, being experimental with things and really kind of seeing what works for you.

Speaker 2: 31:24

What is the title of your book? Called Invisible A Nurse-Turned Patient's Resource to Living Well with Autoimmune Disease.

Speaker 1: 31:30

The mouthful and where is the best or easiest place for people to find it?

Speaker 2: 31:36

Amazon Barnes Noble. You can just Google the name or just, since it's a long name, you can just Google Invisible and then my name. So, melissa Markey, you'll come up. There's a press release that gives more details about the book and some of the contents within it, and then there's a link to my website through the publisher, and on that website there's additional links to Amazon, barnes Noble, apple.

Speaker 1: 32:03

So it's both in an ebook as well as, and if people want to buy a signed copy from you, are they able to do that?

Speaker 2: 32:10

Yeah, they can email me directly. So it's my full name, so it's melissaforperiod and then marqueeatmailcom, so it's a nice, easy email address. So I'll go ahead and set you up with the QR code that you can scan to purchase the book and then I will sign it and then ship it out to you. Wonderful, because I know a lot of people like to do that. Yes, absolutely so. I like to be able to give a little personalized message for folks and let them know that they for me, that they're not invisible. I see the heartaches that they've gone through and the pain and the frustration and just feeling sick on top of all of that. So many autoimmune diseases are so isolating and invisible and each of us, we all have something, and yet by looking at us, I wouldn't be able to tell, and I hear that all the time from people Well, you look great.

Speaker 3: 33:01

Yeah, oh, I hate that I hate that, thank you. I mean, I love to look great, but you know what You're scratching barely scratching the surface, but go a little bit deeper. And I got some. You know I got some stories yeah. I know If you could see more than just our heads. I mean that might tell a lot. Right there you can see the compression socks, you can see all the things. I think we need a button, a happy face button, straight face and then an angry red.

Speaker 3: 33:29

Yes, you know what I mean. This is your mood ring, if you will, for people that have autoimmune diseases.

Speaker 2: 33:36

I use it all the time in my text messages. People ask me how I'm feeling, so I just give them one of my most often used one is the green face one, or the crying one, or yeah, the one I use.

Speaker 1: 33:48

I don't know how to best describe it. I call it the melting face. It's that one that looks like it's melting into the ground. I don't know why, but that is my favorite emoji. What is yours, Steve?

Speaker 3: 34:05

Mine's always like the laughing or the squint with the tongue out. You know, like ha ha, I lean towards humor all day long, you know. I mean I've been on the forums and one of the reasons that Sarah and I started our podcast we have a podcast, by the way, which we must get you on as well, called Arachnoiditis Unfiltered, and we started it because when you go into the forums that are private, people are in there. I mean they're looking for answers, right, and they get bombarded with all this information. We decided to open up our lives, much like you, and share the daily stuff that people go through that other people don't talk about, kind of turn the curtains back on it, and you know it's really focused on positive.

Speaker 3: 34:43

And the thing that kills me the most are people that say how can you laugh when you have this disease? And to which I reply because I choose to laugh, right, I mean I can go in the forums is like a boat anchor. I mean it's like Debbie Downer 24-7. I want to help everybody in there but I can't, and just to feel the misery is so overwhelming.

Speaker 2: 35:03

It is. It's very weighted, for sure. There was a period of time where I was desperate for answers. I joined one of these Facebook groups for the undifferentiated connective tissue disease and, like you said, steve, it's like everybody in there. They all have questions, they all have complaints, they're all searching for answers, like me and I got.

Speaker 2: 35:24

It was such a weird kind of dichotomy. It felt like, you know, we're all there trying to get answers and share each other's stories and find out what helped you, maybe it'll help me. But at the same time it was so defeating and negative and I was but yet I was drawn to it. I couldn't stop looking at it. You know, I'd search, I'd throw in keywords, you know I was just I couldn't let go of it. And then, all of a sudden, just like dawned on me one day. I'm like I'm feeling way too much of this, like I feel their pain, like I hurt because they hurt, like I was like I have to step back, I've got to turn this off. So I like just stayed, you know, in the group, but I just turned off the, the notifications and everything. I was like I can't keep doing this.

Speaker 1: 36:07

that's exactly why I started the community that I started and the podcast and even the support group, and I'm still in one of the facebook groups. It's the zero, zero negative uh ra. I'm still in that of the Facebook groups, the Zero Negative RA. I'm still in that one because it's a smaller group, so it's more that I can handle. I also silent the notifications when I need to, but there's a lot of misinformation that I see going through there, and so I've taken it upon myself to be like well, I do too, and so I'm sending them things and I'm trying not to go down the rabbit hole that they're in, but also trying to educate them and redirect them and be careful not to point to like oh go follow my podcast or oh go buy my book or anything like that. I don't do any of that, but I try to just correct it and redirect them to maybe some useful tools. Yeah, I'm much the same.

Speaker 3: 37:05

I'm steering them all to my podcast. Come on over, I'll make you laugh, I promise.

Speaker 1: 37:10

Humor goes a long way it really does.

Speaker 1: 37:13

At the end of the day, would I rather lay in bed and just think about all the horrible things that I'm feeling and all the horrible things everyone else is feeling, or would I rather have something to laugh about? Why do people like TikTok and Reels and all the things so much? It's because they want to laugh. They want to watch the dumb cat, they want to watch people falling down. You know, I even follow a duck. I don't know why I find it humorous to watch this duck in cute little outfits floating down some water. We want stuff like that in our lives. Yes, we need levity, exactly, exactly, and, steve, you're really good at it.

Speaker 3: 37:50

Thank you, I try.

Speaker 1: 37:51

I was a class clown in high school, by the way.

Speaker 3: 37:53

I got in so much trouble for making the class laugh when the teacher had the back turned to the blackboard. Oh my gosh, this was back when you could get paddled, and I doubt there was a day where my butt wasn't blood red at the end of it. Trust me, I was such an ornery kid.

Speaker 1: 38:09

Well, especially growing up in Oklahoma, because my husband talks about all the time, because he also grew up there and he talks about getting hacks all the time, and sometimes it was because he looked at the clock and the teacher caught him and automatically thought oh, mr Weaver, what are you up to? You know why are you staring at the clock? And he. I was just checking the time, but he got axed that day. Side note, what I wanted to tell you both about is this year we are actually doing the Spoonie Awards, the Spoonie Awards, and we're having Lania's husband actually make us some awards we can mail to people, so you can get an actual spoon award in mail. Oh, that's great Cool. You might be nominated for the class clown.

Speaker 3: 38:51

I'll have to get a red nose or something.

Speaker 1: 38:53

So I want everyone to start thinking ahead. Think of people you want to nominate for all kinds of different things. We can make this fun, we can make this serious. We can do it all. So start thinking ahead. Who do you want to nominate for what?

Speaker 3: 39:04

Very cool, very cool, very cool. I like that, melissa?

Speaker 1: 39:08

Yes, what are some of those daily practices, mindsets or tools that you find have been most helpful for you as you've been navigating your autoimmune disease?

Speaker 2: 39:17

Well. So most of my more nagging symptoms are related to my gut, and so I constantly, even in the summer, everybody makes fun of me for this, but I don't care, it helps. But I have one of these large lumbar herbal packs that you can heat up in the microwave. It's got like lavender scent or whatever. You can add your own essential oils to it. What have you?

Speaker 2: 39:40

I live in that year round, 24, seven, basically. If I'm home it's on me, and so I usually put it on my stomach typically, because the heat helps to keep blood flow to the area. It helps with keeping my extremities warm, because it's your core and so that's where all the blood flow is, and so it's really amazing in the winter. And then I also have heat's a big thing for us with scleroderma, because the disease attacks your vascular system as well. So it really kind of constricts your vessels and so my feet get profoundly cold. You know those are just like ice blocks, you know, all the time and can cause some pretty serious issues. So I have heatable slippers also that I throw in the microwave. So I've got my two heat packs on me, a layer up in blankets, so I use those all the time. That's amazing.

Speaker 2: 40:30

You need one for your hands too. I have one, but I don't use it as often because I think my hands are more sensitive to the heat. So a lot of times what I'll end up doing is, just when I'm wearing the one on my abdomen, I'll just rest my hands on top of that or I'll tuck them inside of it so they're warm. But I have seen and I I've yet to try it, but I've seen things like heated keyboards or heated they can get gloves, like fingerless gloves that are heated as you're typing Cause, obviously, when I'm in my office, you know my hands. They all love the air conditioner in the summer and it's like, guys, I can't, I need my heat on, so it's challenging. And the heated steering wheel have you guys? Do you have one? I have one Game changer. Oh my God, I will never buy a car that doesn't have one. I have to. I use it year-round. And heated seats like oh my God, it's amazing.

Speaker 3: 41:25

I do love my heated seats, man. There's no need for a coat when you have heated seats If you can make it to the car quick enough, that is.

Speaker 1: 41:31

There you go. Yeah, we have the heated seats and the heated steering wheel and we love them. I just wish for my husband for the summertime when he's driving, I wish that he had a cooling steering wheel and a cooling seat, because he's got the opposite issue as me. I swear he's just, I don't know. He's like the energizer heater, I don't know I think guys just in general typically are.

Speaker 2: 41:53

Maybe it's just the more blood flow in your body.

Speaker 1: 41:55

Yeah, yeah.

Speaker 2: 41:57

So, yeah, I use those strategies most often. And then I think, in terms of, like, pain management, I've tried a number of different things. Medications, I've tried a number of different things and I haven't really found like really great benefit to them other than steroids. And I'm not going to promote it because steroids come with their own set of serious risks and they're not meant to be long-term things. But when I'm in a really severe flare that's, you know, like worst pain ever kind of a thing, or it's lasting for months at a time, I'll have to use those just to kind of break the cycle.

Speaker 2: 42:31

But unfortunately for me, recently I've identified that steroids are now causing the pancreatitis or can cause my pancreatitis. So I think I'm nixed on steroids now, for the time being anyway. But Epsom salt baths are the next best thing. Yes, yeah, just feeling like I just, and I don't even need to stay in the tub for all that long, it's like 10 or 15 minutes, just enough to get the magnesium into your body and then just the heat. And you know I'll do it at night before bed and it's really helpful. You know, I come out feeling like jello.

Speaker 3: 43:04

Yeah.

Speaker 2: 43:04

It's so relaxed.

Speaker 3: 43:11

Yeah, so relaxed. Yeah, I'm dangerous when I get out of the bathtub like that. I do have forearm crutches and man my feet. They've gone out from underneath me before.

Speaker 2: 43:15

No, yeah, that's a jellyfish. You got to be careful. Yeah, it is.

Speaker 3: 43:19

But yeah, the baths are awesome.

Speaker 1: 43:22

Do you use essential oils in your?

Speaker 2: 43:23

bath too, I do on occasion. Usually I have my Epsom salt baths that I have have lavender in it, and so they're already infused with it. But occasionally I'll put in some other things. Sometimes I'll put peppermint in if my stomach's feeling really bad. Sometimes I'll use tea tree oils, especially if I'm having some skin issues. So I'll play around sometimes with those. But have you guys ever heard of float therapies?

Speaker 3: 43:47

Yeah, is that the heavy salt water where you actually float?

Speaker 2: 43:51

Yeah, those are amazing, exactly yeah. So my physical therapist recently turned me on to them, so I've used them a couple of times. I actually and I don't know why, but I actually feel better at home in my Epsom salt bath than I do in the float pool, but it is really a neat experience. If you haven't done it, you know for your listeners. I think it's definitely one of those things. If you've got one near you, it's worth the money to at least give it a try and see how you feel, and maybe try to schedule it on a day where you are in a flare or you're having more pain than normal or more stiff or whatever. It's worth giving that a try.

Speaker 3: 44:27

I'd be splashing all over. I can't lay down when I'm in a flare. It's like so painful, so water would be everywhere, because I'm constantly, although. But you're.

Speaker 2: 44:36

You know you're just you're floating, so it's not like you're trying to hold yourself up, so it it actually causes more neck pain for me. I have a hard time finding a comfortable position for my head, so I kind of battle with that when I'm doing it. But I found, you know, doing it for a shorter time period I'm more comfortable. I can't sit anywhere for an hour or you know lay down for an hour anywhere. So but you just got to experiment, play with things and see what works, I think, for anyone that is willing to try it.

Speaker 1: 45:07

Definitely try it and see if it works for you. I loved it. I don't have one close to me, but the one time that I did try it back where I used to live, it was so relaxing and it forces you to float and it forces you to try to relax and close out all the noise around you. And luckily, I needed something. I needed something, so I was glad it had music as an option. You could either have complete silence or something. I needed something, so I was glad it had music as an option. You could either have complete silence or music. I needed the music. The silence weirded me out. Yeah, then you could see me in pitch black. Or it had different colors. I loved having the colored lights.

Speaker 3: 45:44

Put a little in you. Yes, I know.

Speaker 2: 45:48

Absolutely, sarah McLachlan. Yeah, you know. Yes, I know Absolutely.

Speaker 3: 45:50

Sarah McLachlan. Yeah, all those.

Speaker 1: 45:53

It'd be 80s music for me.

Speaker 3: 45:55

Yeah, oh yeah.

Speaker 1: 45:56

Rock or All of it, All of it. I just love all 80s, 80s and 90s. It's like if you come into my house, that's probably what I'm listening to most of the time that's on the playlist. Yep, yeah, Okay, so where are we at here? So I skipped a few of the questions because I feel like we kind of went over some of the stuff without even having to ask you. But what's one thing you wish every healthcare provider understood about patients with systemic autoimmune diseases?

Speaker 2: 46:26

That we know our bodies best. We know them way better than they do. They understand how the body is supposed to operate in a normal, healthy state and they obviously understand when it's in an unhealthy state, right when disease forms or starts. So they understand those elements, but on the day-to-day living with it, unless they have it, they have no idea what it's like. They can hear us complain about the symptoms and gives them a general understanding or general direction as to you know how we might be feeling. But so I think one of the things that I, I guess, really try to impress on my own doctors is you know exactly how I'm feeling, what I've tried to help make me feel better, what has or has not worked. You know, and I also want them to know, that it's okay if we do our own research and come to them with a possible solution, or maybe not solution, but a possible new treatment or something, a new alternative therapy or something to try, because, especially with alternative or complementary medicine things, a lot of doctors get put off by it, and you know, honestly, I was sort of in that camp for a long time. You know, I'm very Western medicine oriented, or had been up until getting sick, and much more so recently, when there's very little treatment for me, and so it's hard. It's trying to find things that help to alleviate some of my more troubling symptoms is difficult, and many of the meds that are available I don't tolerate or I can't take because of allergies or what have you.

Speaker 2: 47:57

So I try, and this is one of my advocacy tips for people is you've got to be kind of your own disease detective. You have to understand your disease in and out treatments, the testing, all of it and when those are not working for you, search outside of that. What else can you do? What other practices could you incorporate, whether it's mindfulness practices, there's over a hundred of them. So what other tips are out there that might help to reduce the severity of the symptom or the frequency of the symptoms? What are other alternative treatment options for you?

Speaker 2: 48:34

For example, I've found a number of different herbal antimicrobials that I can take in lieu of taking a prescribed pharmaceutical antibiotic, and they've found studies, research studies, that have actually proven that the herbs work better than the drug, and so I'm like well, I'm going to go with the herbs. The ground produced those, not some chemist, so just those types of things, but making sure that you're working with your doctor and communicating with them and sharing the information that you're finding, and I think most often if you're doing it in a way, in a collaborative manner, not just to say I don't agree with what you said, so I'm going to go find my own treatment, you know, it's, I think, all in how you approach that conversation with them. But I think that the doctors are much more willing to work with you and allow you to try certain things or are more agreeable to trying things and see if it works. And I've actually now heard some of my doctors encouraging other patients to use the treatments that I've found and given them research on. So that's kind of huge for me.

Speaker 1: 49:37

I'm definitely proud of you guys that do that. Yeah Well, thank you both for your time. And, melissa, your story is such a powerful reminder of strength that it takes to navigate. I hope there's a treatment out there that eventually does the trick for you. I hope they come up with something.

Speaker 2: 49:55

That would be nice, but if it doesn't, that's okay, because you know what? I've found purpose in my pain, and I just encourage others to find theirs as well. There's always something good that comes out of a bad situation.

Speaker 3: 50:08

And you have to look at it from that perspective. Something good that comes out of a bad situation. And you have to look at it from that perspective almost always, otherwise you're going to say why me Woe?

Speaker 1: 50:14

is me and poor me. That's really easy to do, and so, listeners, if you're hearing us right now, remember, find the humor, find the purpose, find the positivity and find your smile. And also listeners, remember, remember you are your best advocate. You deserve care that supports your whole self. If melissa's story resonated with you, check out her book for more tools, insights and encouragement to help you live life with a chronic illness. And, as always, keep showing up for yourself. You're doing amazing. We're in this together, and don't forget your spoon.