Everybody, welcome to the book leads impactful books for life and leadership.I'm your series host and leadership performance coach, Jon Jaramillo.
This podcast series is about getting to the books that have impacted the lives of the people in my network, people that I've known for a while, a long time, people that I've only met recently.
So these are all great leads that I'll be interviewing on these books.I want to get to the books that have brought the most value to their lives, their work, their business, whatever it may be, whether it is their book or somebody else's book.
And in the series, I cover three categories of book, one where they're sharing a book with me that I haven't read, another one where we're both covering the book that we've read, whether specifically for the series or before the series in our past lives, the third category where I have the author and or publisher on the series to discuss the book, to get their tone, their story, their background for you to see who they are, and then jumping into that book that they want to share.
And I have an author today.So my guest today is Melissa Marquis.And Melissa is a nurse, author, and emergency management specialist.She has decades of experience in both the nursing and emergency management public health fields.
Melissa also wears the hat of patient.Beginning in 2008, she began noticing seemingly random symptoms out of character for her.She quickly began her quest for answers.
Utilizing her medical experience and connections, she sought care with numerous specialists. For a number of years, her status was relatively unchanged and symptoms persisted and pain levels increased.
Frustration started to build at the lack of any diagnosis or answers to why and what was happening.
After almost 13 years, five rheumatologists and numerous tests and procedures later, it was confirmed her symptoms were largely related to systemic sclerosis or scleroderma.Melissa, how do you say that?I'm sorry.
And I nailed it right before we began recording.
Yes, it's a tongue twister even for me.
It always is, right?Since then, Melissa has been a passionate advocate for patients within the autoimmune disease community, specifically sclerodoma.Boom.
After recognizing the lack of information available for patients who undergo years of visits and tests with limited or no answers, Melissa curated a resource book to share her experiences and lessons learned in navigating this challenging spectrum of illnesses.
And I met Melissa in high school.After that, we lost touch, but with technology today, Facebook, LinkedIn, we were able to connect again.So you kind of see what is going on in someone else's life, whether it's personal, whether it's professional.
Melissa shares a lot about both of her worlds, a lot of emergency management, a lot of healthcare tips, things that are out there that are taking place in her universe, again, both professional and personal.
And then I started seeing that she was putting out a book and then it was published, it was out. And obviously with this series, I know Melissa's background.I know her specialty.
We got to talking back and forth and I asked her if she'd come out and discuss the book and then the personal journey that based on what she was sharing, I could see it was based on her journey, if she would share that here.So here she is.
And Melissa, thank you for joining me.
Thank you, John, for having me.I'm so grateful for the opportunity and glad that we've been able to reconnect after so many years.
I know.It seems like just yesterday we were in high school.
It does at times.Other times it's like forever ago.
Yeah, yeah.Time flies.I mean, it's a cliche, but it's incredible just how much happens in all these years and how quickly it goes by. Jumping to you now, the first question I always ask is, who are you today?
So I share what I see on social media, whether it's Facebook or LinkedIn.But to give the audience a better idea of who you are, who are you today?
Can you provide the ins and outs of your day-to-day, whether it's work or the work that you're doing on the book for the book?
Yeah, I mean, I can give you a little bit of background on me, my sort of professional journey, a little bit into the personal, the book journey as well.
So I guess, you know, at the base, my core, you know, everything that I've known since I was a little kid is that I'm a natural born caregiver, like a helper. a fixer.
I tend to gravitate towards those things, whether it's medical or it's some other issue that needs to be resolved.It's just something that I can sort of see that a lot of other people maybe might not see immediately.
And so what I've, it's sort of, like I said, what I've always wanted to do without even knowing it.And so it's, for me, it's just very innate.It's just like breathing to me, you know, it's just, has always been there.
I can remember, you know, as a child, I wanted to be a doctor, I wanted to find a cure for cancer.And that was my thing.And my friend of mine, one of my neighbors growing up, she wanted the same.
And so we used to play doctor all the time and come up with cures for cancer using our microscope set, you know, it was great.
And then, you know, as the years went by, I still maintained that passion, you know, wanting to go to medical school and getting into the healthcare field and really making a positive impact on my community.
And then life happened, you know, it's in high school, I ended up developing a blood clot in my leg.And I had applied to a couple of schools, my junior into senior year, and I didn't get into the schools that I wanted to.
And so it just kind of threw a curveball to me.And I was left in the hospital, as a senior in high school with limited options.Okay, what do I do now? I don't have, you know, there's not enough time to reapply to schools, blah, blah, blah.
And so I just kind of took a look around me and I saw healthcare from a different perspective.So I started more as a patient at that end and I thought, okay, well maybe there's a little bit more to this than just being a physician.
And so I decided to go into nursing school.I was able to enroll in a college right that next fall.
And so I started that portion of my career and it definitely showed me that there was more to the medical fields than what I saw at face value initially.
And so then I sort of thought, okay, well, I'll maybe transition, you know, from nursing and either develop or obtain my nurse practitioner license and, you know, kind of move up in the field a little bit in that regard.
And then again, sort of life happens.My father passed away very suddenly and unexpectedly and just really kind of threw me for a loop.You know, it, I didn't, I didn't see the signs at the time of what was going on.I wasn't here.
I couldn't see him in person.And so it just, I think it kind of messed with my head for a bit.And I thought, all right, well, work is crazy.The hospital is really busy.I don't know that I want to work in that field anymore.
What else could I do if I go back to school?What else could I do with that degree?
And so I really questioned a lot of what was happening and all of this was taking place You know within a couple of years after 9-eleven and so, you know, the world itself was changing there was a lot happening and I was really drawn to
getting more into that emergency management field, not even knowing what it was because it didn't even exist prior to 9-11.And so I got really interested in that and decided that that's what I wanted to get my master's degree in.
So I did go back to school, got my master's degree in a field called biosecurity and disaster preparedness.So big fancy words for basically emergency management. Um, so I have a little bit more of a focus on infectious disease and public health.
Um, and so now, um, you know, I've been working in this field now longer than I was working as a nurse in a hospital setting.So it's, um, it's a little different these last, you know, 16 or so years, but I love it.It's. It's different every day.
I still get to use my nursing degree and my medical knowledge.And then obviously with my health, I'm using that a lot more.I'm trying to figure out what's been going on with me and knowing how to advocate the best way I can for myself.
And so, yeah, I think that that's pretty much where I've been.
A lot of- So what does your work today look like in the day-to-day?
Well, so I work for basically two entities.I'm a full-time employee of a health district in Connecticut as their emergency response specialist.
And so I basically, I write plans, disaster emergency response plans for any kind of a hazard, whether it's terrorism, severe weather, like hurricanes, like unfortunately Florida has been dealing with in the South.
You know, so we're trying to basically look at all of the potentials, all the bad things that can happen and how do we as a health district prepare our own staff internally and as to how we would need to respond.
And so thinking again, like the pandemic, you know, we had to have plans in place for COVID for all that entire time.And so, um,
you know, we're constantly reviewing the plans, updating things based on what others are learning, other disasters that have occurred and sort of integrating them into our own fields.
And so recently I just started working with a local fire department that's also houses their office for emergency management.And so I'm kind of a liaison between the health department and now the fire department
And so I'm going to be creating a new medical resiliency program, mostly, you know, aiming to keep individuals who might have some medical needs at home safely during an emergency.
rather than trying to risk them maybe going to a shelter or trying to leave an area where they might fare better, you know, at home where they have their team or their supplies and medications and what have you, their family there.
to help support them.And so a lot of it is going to be geared towards keeping people safe at home and trying to respond to their issues.And hopefully they won't have to rely on calling 911 so often.
So that's a brand new program that doesn't exist and doesn't exist in much of the country.Not that I've found.So it's a pretty novel thing that we're going to be starting.
Never a dull moment for you, huh?
No, it's been a pretty busy couple of years here, just coming out of COVID. Yeah, and then my health just hasn't been good these last few years, not surprisingly, because of stress and other triggers.
And so, and then throwing writing a book on top of it.But I like to be busy.I don't like to sit around and just twiddle my thumbs.
Yeah, I get that.So, and you mentioning it, that the last couple years have been harder because of your health.
How do you make sure to kind of monitor what you're doing, how much you're doing, how much you're balancing, you know, your energy, your capacity with what is needed of you?How are you, how are you proactively staying ahead of that or trying to?
Yeah, no, that's a great question. A simple answer is it's difficult, it's challenging, it changes daily, and sometimes minute by minute, hour by hour.I like to say that my illness is predictably unpredictable.
And unfortunately, I think that's the nature of a lot of autoimmune diseases.And there's, there's quite a few, I mean, there's over 100 different autoimmune diseases that we know of right now.And it's just, it just keeps growing.
And so, you know, I've gotten to know uh, my symptoms over the years.
Um, and when they are, uh, pointing towards, uh, you know, going into, uh, an illness flare, you know, where I have increased level of symptoms or multiple symptoms at the same time.
Um, usually it's for me, it's a lot of, you know, I've got more fatigue, decreased energy.Um, I might have more issues with my, uh, GI tract. I might have more palpitations or arrhythmias.So there's a lot of different things that happen to me.
And sometimes all those symptoms happen at once.Other times they're one after another or only one at a time.So it really is pretty random in a sense. But I've noticed that stress is obviously a large trigger for me.
And so I do as much as I can to reduce that amount of stress.And so that might look like if it's a big issue, let's say I've got a new concerning diagnosis that just popped up, or I've got some new issues that are occurring health-wise that
could throw me sort of for a loop, I might want to talk to my therapist and just kind of talk things out a little bit more in detail, just to help me process through what's happening.
Because my illness is progressive, there's no cure, and it is currently the the only autoimmune disease, the highest, the sort of highest fatality rate of, you know, yeah, unfortunately of their patients.And so it, you know, it's a serious illness.
And so, and it's, again, it's a little bit unpredictable in how it's going to present.And so anyhow, you know, identifying what those triggers are going to be and putting
sort of actions in place leading up to that or as much as, you know, preventative as I can.So again, like I said, talking to my therapist or sometimes it might just be increasing my level of exercise if I can.
For me, I like to exercise as much as I can because it helps may feel better in a sense.I might not feel well at all while I'm exercising, but always after the fact, I feel much better.It's like an endorphin rush.
It's good that you are as prepared as you have been for your career, because it puts you in that management, that reactionary mindset, where I can only imagine that this is what it's like.
But it's incredible that at least you have that experience of managing emergencies.So as you go, you're just collecting data.OK, this time, this happened.So I did this.That seemed to help.Or I did this.That didn't happen.Or that didn't help.
So I can imagine that that provides some kind of foundation for you, strong foundation to be, just having had that mindset for so many years of managing something that just hits you in different ways, in different forms and different, you know, levels of, of, of force.
Yeah, I've definitely learned a lot over the years.And for so many years, it took a long time for me to get diagnosed.So for about 10 years, I had no definitive diagnosis.
So where were you in that story you just told us?Where were you in your career when this started happening?
I just left.So I left Hartford Hospital where I was working as a nurse in 2006.Went over to CCMC for a couple of years, so the Connecticut Children's Medical Center. And while I was there, I was back in school.I was working on my master's degree.
And so around 2008, I was almost done with my master's and wanted to get into the emergency management field just to make sure that I'm not leaving a career for a new career and absolutely hating it.
And so I kind of wanted to get a taste of it before I actually committed, right?And so I did that.And, you know, I learned that I loved it.
And so it was right at that change, at that point of change, between leaving my nursing career and starting a new career, that that is when I first started noticing symptoms developing.And so I'm not surprised at that because it was high stress.
You know, it was a it was very difficult for me to get to that point of saying, OK, well, I'm going to put this career on hold and move, move to something totally foreign to me, basically, and hope to God that I do OK with it, you know, and that I like it.
And it's not I'm making a big mistake and wasting a lot of money. So yeah, that's basically when I started noticing things was around 2008.
So then, and then so many visits, specialists.
Oh yeah.Yeah.For every, I saw a rheumatologist about every two months for about 10 years.And they'd do blood work, they'd do the whole range of different testing.And the best I got out of them was, hey, your fingers look kind of tight and shiny.
How long have they been like that? Well, yeah, your labs look okay.
So nothing really definitive, but we think that you have some level of autoimmunity, which means some sort of immune dysfunction, your body's attacking stuff, but we don't know why and we don't know what yet.
And so that was basically all I knew for 10 years.And you know, so During that time, I would track my symptoms.I'd track what I was doing when I had those symptoms.What was I eating?
Just to try to identify what were the triggers leading up to them because I don't always feel symptoms.On my good days, I feel normal.I have nothing going on.Other days, it's I'm like a train wreck.
I can go one day to the next and have a huge disparity between the two. Sometimes I don't even know what a trigger is.But it's like I said, it's taken me, I've been living with this now for 16 years since it started.
And so I've developed a pretty keen sense on what my triggers are going to be, when are symptoms going to develop, you know, and I can almost predict, you know, give me a week in advance, and I can pretty much predict how I'm going to feel the next week based off of what's going on in my life at that moment.
Oh, really?Yeah. So is it really, is this typically that hard to diagnose or is it different to diagnose across different people?I mean.
Yeah.So everybody's different.Obviously we have our own medical history that we're bringing to things.
We've got, you know, just everybody's unique and, um, within autoimmune diseases and particularly scleroderma related, every patient looks different.Um, while we have the same issues in the, it's attacking the body.
in the same general context, it's taking into factor our genes, our environmental exposures, whatever other medical history or anything else going on in our lives, stressors, things like that.It's taking that all collectively.
and it's being influenced within our body.And so it's presenting, for me, most of my symptoms present sometimes very differently or atypically that they would normally see.So I'll give you an example.
Like with scleroderma, many patients end up developing what's known as pulmonary fibrosis, which is basically scarring of the lungs and causing the lungs to just be very stiff.They can't expand.
you end up having a lot of problems and that's usually what leads to an early death, unfortunately.So recently I discovered that I have signs of some type of fibrosis, but it's not the typical type that's seen in scleroderma patients.
And so we're trying to figure, well, is this something completely unrelated or is it part of the scleroderma even though it's atypical?And so I tend to fall more on the rare side or the atypical side of things.So,
it's challenging, very challenging on that front.And so it's, yeah, it's difficult.
Yeah, it's like a moving target.
It is, for sure.And it's constantly, you know, it feels at times where it's like, okay, well, what shoe is going to drop next?You know, I went through last was the last year, I think I went through a period of
I have to have regular tests and evaluations done.And so I was going for one problem that I started to experience.And during the workup of that one problem, I got diagnosed with two other issues, substantial issues.And so I'm like, OK, now what?
What's next?And so it's just one of those things where you constantly feel like you're playing a game of whack-a-mole.
That's incredible, especially for someone who has just been guided towards helping others.And I remember how you were in high school, like you just always seemed like that person that was supporting others, helpful to others.
I mean, just one, especially, you know, we were kids and you just had this, this air about you of just supporting and helping others and looking out for others.
Oh, thank you.Yeah.It's, it's been difficult being on the other side of the bed.
Um, you know, as we say, so as a nurse, you, you know, you're taught all this stuff in school, you know, you know, you understand the basics behind the medical components and you understand how to interact with patients and help them manage and process through their own individual issues, help their family process through it.
But when it comes to you being on the other side of that bed, it's a whole different story.Yeah, it's, it's really difficult, you know, and I came to a point last year, when I had all those medical issues pop up at the same time.
It never actually dawned on me.So for at that time, for 15 years, I had been pushing and pushing and pushing to get a diagnosis.And I kept telling my doctors, I knew what was wrong with me from day one.And I couldn't get anybody to believe me.
And it took me 12, almost 13 years to finally get somebody to say, yes, we agree.That's likely what you have.But up until that point, it was all me pushing and seeking answers.
And then once I finally had the answers, once I finally had a doctor say, yeah, I believe you, like, this is this is what's going on with you.Once all these other systemic issues started coming up with me,
reality hit and it hit really hard and it was literally one day I was I had just come home from a medical appointment and I was, you know, a little bit anxious about what they were telling me.
And, you know, it just dawned on me like, oh my gosh, this is actually real.Like I, I always knew that I had the disease, but I didn't, I didn't prepare myself.
Yeah.I mean, cause you spent so much time trying to convince them.
Yeah, exactly.So I didn't prepare myself for actually what it was going to be like to live with it and to have to keep facing. you know, day after day, these new issues that are going to pop up.
And so it really kind of threw me for a loop for a little bit and had to kind of come to terms and reprocess through things yet again.
And, you know, I'm sure that as, as this illness progresses and as times goes on, I'm going to be faced with more of that.And so, you know, hopefully it'll be kind of come old hat for me and I can easily move through those,
stages of acceptance and what have you, but it's difficult being on the other side sometimes.
Yeah, there's just no way.
As much as you have your medical training, your professional training, you know how to deliver that bedside manner to somebody, as much as you know what that script, that cadence, that tone is for somebody else, I can't imagine it prepares you for hearing it back to you from somebody else.
Right.Yeah, it's, it's hard to describe what it actually feels like outside of just being, you know, difficult and challenging.And I don't know, it's almost a little bit of like an out of body experience, in a sense.
Yeah, it's probably the best way I can sort of describe that.
No, that's a good way to describe it.I get that just that disconnect of you always sharing it with somebody else, it coming back to you.
Melissa, when it comes to your nature, how you described, just like a natural caregiver, how much of that was, do you believe, your own innate personality?And how much of it was maybe things you saw modeled in your family or community?
Where do you think that came from?
I think a lot of it is just innate in who I am. I think within my family structure, I think I just kind of naturally took that role of fixer no matter what was happening.
This is actually something that I had talked to my therapist about years ago after my father died.And I don't know how or at what point it actually happened, but there was a point where I think my parents.
understood that that's sort of who I was, that I'm the strong one, I'm the fixer, I'm the one to sort of help to kind of carry things along maybe.
And I'm the youngest, I have a sister who's a little bit older and typically you'd think that the older child would sometimes bear a little bit more of that responsibility, right?And not usually placed on the younger one.
But for some reason, again, I don't know if it was, unintentionally kind of placed towards me or I just took it and ran with it.I don't know.I mean, I never considered it growing up and never even noticed it.Honestly, it's just who I was.
And so I think that that's just kind of carried me through to where I am now.
And, you know, just building off of just my professional experience, you know, I know what I have to offer and what I can provide individuals, you know, whatever the circumstances. If I don't know the answer, I can get your resources.
So that's what I gravitate towards.
Now, you've painted quite the picture from childhood to now, who you were then to now.How do you reconcile where you are now compared to who you were as a kid?You've kind of, again, painted that picture.
But I'm curious about the words you would specifically say, this is how I reconcile who I was a kid to now.It makes sense that this is what I'm doing.
Yes, it's kind of hard to just to really answer.I mean, I feel like I'm the same exact person as I was as a kid.I've always been somebody that, again, is looking at the bigger picture, you know, looking to see
you know, what's going on, and is there something that somebody needs help with?And it's just, as I said, it's just, it's part of who I am.You know, I can't separate that out from who I am and what I do, even to this day.
It's just, it's there, you know, it's as if I was breathing.And it sort of doesn't matter what the circumstance is.It's just, it's just me.
For this next question, I've heard a few while we've had this conversation so far, just whatever, 20 minutes in, 25 minutes in.But what do you consider your superpower?
I think probably being a good listener.I think it's two.I think it's being a good listener and, again, identifying what the need is and immediately stepping in to fill it. and that it's just emergencies don't bother me.
I'm quite comfortable around them.You know, most people get freaked out.They, you know, their fight or flight takes over and they just either freeze or they run away.They don't know what to do.I've always been the opposite.
And so it's, again, it's just sort of this innate process to jump right in or wherever it's needed and do kind of whatever it is.So I think that That right there is the superpower.
Luis, before jumping into the questions on your book, what does leadership mean to you?What does great leadership look like?
Leadership for me is, I think, having somebody, and it doesn't even have to be a defined leader.Anybody could be a leader.But I think it's just leading by example.
It's doing the hard things and showing others how to do it, and letting them ask questions along the way, or guiding them to ask the questions. Let's let's figure this thing out together.And, you know, we'll walk with you and then we'll support you.
And, you know, we're going to stand beside you.And I think it's also something that as leaders.You're not going to ask somebody to do something that you wouldn't do yourself. And so that's a big aspect for me.
I've always felt strongly about that and I never cared for any leaders that I saw that would try to delegate a task to somebody and think it was beneath them and wouldn't do it themselves.
I always sort of looked up to those leaders who would say, okay, well,
you know, seeing, watching, I don't know, watching somebody, you know, take care of something in the bath, like cleaning the bathroom, or something silly, like little would be sort of beneath them.Exactly.Yeah.Right.
So you just I think it's, it's a lot of that.And just, and you don't see that too often.
No, you know, you don't see people that are willing to roll up their sleeves and just set that example.
Right, again, I mean, I think, you know, within leadership, there's so many courses, there's lots of things that you can train yourself and educate yourself on, but that is a quality that is instilled in you as a child and you grow up with it.
It's not, yes, it can be taught, but I think that's more of an innate, you're born with this type of a quality or an attribute and it just, flourishes and it grows the more into your career you get.
Absolutely.Great response.Now, jumping into your book, Melissa, can you introduce it?
And then what was it that led up to, I mean, obviously we have a great idea what led up to it, but how it came to be where you really pulled the trigger on getting this book together?
Yeah, so basically about four or five years ago, I was listening to a podcast and it was by an author who I've never read her books, but I would listen to her podcast often.
And she would often bring in other individuals that were authors like herself.And so these two women were talking about an upcoming book that had just gotten released.
And they were sort of just talking about the writing process and how people can become writers. and sort of encouraging the next generation of writers.And I remember I was out for a run while I was listening to it.
I was like, huh, what would I write about?You know, if I had the desire to do that, which I don't know if I do, but if I wanted to, what would I write about?And I thought, well, I like the idea of writing.
I've always enjoyed the writing process for different things.And, you know, I write a lot of plans for work. similar in a sense.It's very technical, but it's similar.And so, you know, I was thinking, I was like, well, what could I write about?
And nothing came to mind.I thought, well, I have nothing important to share, nothing that anybody would want to read a book about or spend money to read about.
And so I was like, just kind of dismissed it for a while, but it was sort of always there and kind of in the back of my mind thinking, maybe, maybe one day, you know, I'll develop a bright idea.
And so, like I said, that was about four or five years ago.And it was at that time where my health really kind of started to take a downward turn.I was developing a lot more systemic problems to my illness.
And so, it just, as I moved through things and as I processed that sort of the process of processing a
complicated medical diagnosis and getting to the point where hopefully you can start to accept things and move through it, I started to recognize that, you know what, I've learned a lot along the way.
There's a lot that I can share with people who are going through something very similar.
And then the more I started to think about that and kind of ruminate on it, you know, it became really clear to me that I actually have something very important to say that's both very personal and also something that is unique.
You know, it's more than just telling my story of how I became sick and how am I living sort of this quote-unquote well-lived life while living with an autoimmune disease.
But it's, I think it's more to be able to share the resources that I've amassed over the years, both professionally and personally, and to help readers, help people that are either
newly diagnosed or undiagnosed and going through this process like I had those first 10 years where I know my body, I know something's wrong, but I can't get anybody to believe me.Or it's just not at a stage yet that it's visible.
And so this idea of autoimmune disease being invisible generally to the naked eye, I thought, well, that's intriguing.It kind of captured my attention in terms of, well, that'd be a really great name of a book.
And many autoimmune diseases, in fact, are invisible.Most of them are either systemic or don't have any external manifestations.
And so the more I, like I said, sort of the more I thought through things, I thought, all right, well, this is a really unique opportunity.
And I've had a lot of individuals that I've spoken with over the years where I've been able to share my personal and professional experiences in dealing with many of these symptoms.And with autoimmune disease, a lot of the symptoms tend to overlap.
And so there are similarities between illnesses and sort of the way that they're presented might look a little different based on what disease you have.
So I thought, well, you know, I can be sort of generic enough, but yet still impactful in terms of here's some tips that I've learned.Try these out.They might work.They might not.
But, you know, the only way you're going to know, excuse me, is to try and see how things play out. And so that's how it came about.
I mean, I was sitting now two years ago, just over like a month or two beyond two years, I was sitting in my living room.I just finished reading my Bible.I was just kind of praying and just having some quiet time.
And I just felt very clearly, you know, from the Lord saying like, I've given you something, some part of your story to share.You do have something to say.
And, you know, between those four years, four or five years of not thinking I have anything to say, I feel like my illness that God has allowed my illness for a number of different reasons.And most of it is to share my experience to help others.
Because again, helping is my nature.Fixing is my nature.And so if I can help others that are also walking through
something similar and help them to feel a little bit better or to at least feel visible that someone else can see what they're going through and understand, really understand.
I might not have the same disease as the next person, but I totally get it.I see all the pain, the heartache, the issues, all the symptoms, all the doctor's appointments and endless tests.I see it all.I feel it all, literally.And so,
I feel like as much as I can share all of that and also teach people about autoimmune disease, about how to be a good self-advocate, when to go talk to your doctor, what types of symptoms should you talk about, you know, just helping to prioritize things.
You know, I feel that that's very important and it's missing. You know, it's not something that is normally talked about outside of, you know, two friends having a conversation.Gee, I got a really bad headache.
You're not really gonna talk about all those nuances that might happen, right?And even when you go to the doctor, you're there for five minutes most of the time, depending on what's going on.
And so they're not telling you, well, here's what you should talk to me about, you know, X, Y, and Z. So I feel like this was a good space to sort of share all of that stuff in one sort of cohesive, comprehensive book.
in a way that is easy to understand, is digestible.You could sort of flip it open to any section that's important to you.You know, if you're wanting to learn about how to navigate the healthcare industry.Okay, well, I got several chapters on that.
So you can just kind of go through, pull out what's relevant to you at that time, or you can read it front to back, you know, all in one sitting.
So- Before we jump into an overview of the book, just kind of that path that you walk readers down.
Based on your prior medical experience, based on your experience in all those years where you couldn't get a diagnosis, based on any research you might have done to complement the book, is there anything you think could have been done differently to get your diagnosis earlier?
Yeah, I certainly have thought about this a lot over the years.And I think There might have been a couple of opportunities, you know, finding, it's really all about- I don't mean on your part.
I don't mean it as you didn't do enough at all.I mean it from, you know, generally speaking, was it the wrong people?Was it the wrong, you know, another specialist in that field would have been more attentive.
I'm just curious, like everything you've learned, if there was anything that could have been done to see it earlier.
Yeah, I really wish that in my case that there was.
I think for me, again, the way that my disease has presented itself, it's gone pretty slowly in some instances, and there are still attributes and manifestations that I don't experience or haven't presented with that are sort of the hallmark pieces to getting a diagnosis.
And so I'm a little, as I said, atypical with some of this.That being said, though, I think finding the right provider is critically important. Over the course of my journey with illness, I've seen probably five or six different rheumatologists.
For the first 10 years, I basically stayed with the same woman, the same physician all that time.
finally came to a point where it was like okay I've been seeing you every two months and we're not getting anywhere you're not really telling me you're not educating me on anything and I was so still sort of new to it all and because we hadn't really talked about a specific diagnosis there was nowhere for me to really research.
I didn't have a Aside from my own personal opinion on knowing or thinking that I had scleroderma, I never really looked at it as this is the illness to sort of hone in on and research.
And so I was just researching symptoms, which, like I said, most autoimmune disease symptoms are pretty common, they overlap with a lot of other illnesses, even just the common cold.And so sometimes it's really challenging to figure that out.
So you have to have an astute physician, one that's really well-trained, particularly finding, if you have an idea on what illness you've got, try to find a specialist that sub-specializes in that particular illness.
And so the last two doctors that I've seen were scleroderma specialists.So I went up to Boston for one.He completely dismissed me, gaslit me, total, you know, never going back to him again.
And then, you know, within two months, I got into my current doctor at Yale is a new scleroderma program.And almost from day one, she's like, yeah, I, you definitely have, you know, symptoms of this.
You know, it's, it's still a little bit early, you know, we'll watch it.We'll, we'll just kind of keep going over this.And, but ultimately she did agree.And so it's,
as I said, it's just, in my experience, it's been finding, making that connection, finding that right provider, that's going to help you to get the diagnosis you need.
But you have to be, you've got to be proactive, and you have to be observant of your own symptoms.And that's where that self advocacy role comes in.
Yeah, I think most of us lay people aren't good lay people in the medical field or any kind of lay people in advocacy, we're just, we go to the specialists. Who's at network?Who's a referral from a friend?
And then what they tell us, it's like, OK, you're the specialist.I'm the patient.You're the specialist.You should know these things.
But that's why I like that there's this resource out there, like your book, where you can bridge that gap between the layperson and somebody who's walked that path, like yourself.
If this is the way you're feeling and these are the kind of responses you're getting, You have the right to advocate for yourself.You have the right to get a second, third, fourth opinion.I think people typically will stick with.
If this is the doctor I've had for the longest time, or if this is the doctor that my friend has had for the longest time, they have my best interest in mind, at heart, I'll go with what they say.
And they don't consider, even though they're feeling a different way than what that person is diagnosing or not diagnosing, they will just stay loyal to that instead of, again, advocating for themselves.I think most of us are missing that piece of,
really seeking out, doing a thorough search, much like what you're outlining here.You have that right to.
Right.And we see that a lot in sort of the older generation where, you know, they hold physicians in such high esteem, which is great because they deserve that.They've gone to school for a very long time.
They're very well trained, but sort of stopped seeing them as people, as a human, you know.And so I think that they just tend to look to them and it's sort of, as you say, like, OK, well, this is what they're saying.
This is what they're recommending based on their experience and their knowledge.And so I'm just going to do what they say. Without question and is sometimes that can get you into trouble because if you're not paying attention and you're not doing
I don't know, it's just kind of- Your own due diligence of some kind.Exactly, right.Yeah, if you're not doing that, then chances are something might get missed and it's gonna potentially delay diagnosis and delay treatment.
And so you really do just have to be super aware of your own body and what's going on and not be afraid to speak up and ask for those second opinions if you're not getting anywhere. or ask for the third and fourth and fifth.
Doctors often appreciate that.They want somebody else.If there's somebody else out there that knows a little bit more about whatever that potential disease or issue is, why wouldn't you want another opinion on it?
Especially in somebody that's complicated, that has a lot of other medical issues that, when working together, complicate the issue.
So in that kind of idea, in that same vein of the lay person, me, how do you organize your book?How did you organize it to walk that person through that path, that message that you want to send to them?
How did you structure it in the best way that you know how to introduce it to them, to walk them through it, to lead them, kind of posing questions for themselves, advocating for themselves?What does that structure look like?
Yeah, so it's funny that you ask that.So that day that I mentioned that, you know, I was just kind of leaving my prayer session and really felt, hey, you do have something to share.Immediately, I had the title written out.
And then within 30 minutes, I had the entire structure of the book laid out.It was just, you know, almost instantaneous.And it surprised me.And I thought, well, wouldn't that be God to do something like that?
Like, you know, you often hear about authors, you know, having like, you know, this kind of, blank stage where they're just staring at a blank piece of paper and just totally mind going completely blank and not knowing what to write.
I had never experienced that.I had something to say on every page.But I think what I wanted to start out with is the basics.So understanding what is autoimmune disease to begin with and what's happening within the body that is, what's going on where
your cells go from attacking the foreign substances, infectious virus, different things like that, to then going and attacking itself.Because at its core, that's what autoimmune disease is.Your body is attacking itself.
And so it sees your own cells as foreign, where they're not supposed to be.And so
Again, based on your own family history, your health history, your genes, your environmental exposures, that's what all sort of dictates what illness and what disease you're going to ultimately end up with if you don't stop it immediately.
And unfortunately for me, 10 to 13 or so years later, not having the appropriate diagnosis led to maybe not receiving the best treatment for me, which then led my disease to progress.
So the further along an autoimmune disease progresses, the less likely you are to stop it entirely or slow it down enough to prevent, you know, further systemic issues or more damage to your body, depending on the disease itself.
And so I wanted to explain a little bit about the science in an easy to understand manner.And then I wanted to talk about the symptoms, the symptomatology that's common across several different types of autoimmune disease.
I talk a little bit about the different types, categorizing symptoms, such as more localized, external types of symptoms, or systemic symptoms.So internal, that's affecting multiple organs.
And then kind of transitioning out of that, we talk about, well, when do you go to the doctor?In which doctor do you see?Do you start with your primary care?Or do you go to urgent care or a hospital?
Or do you already have an idea that this might be an autoimmune disease, and you go to the doctor that specializes in autoimmune disease, which is a rheumatologist, typically?
So in my case, I started out going directly to rheumatology because that's what I knew.I knew what was going on and I knew that that's who was going to treat it.
I didn't want to waste more time going to my PCP and getting a referral when I didn't need one. And so I just self-referred, went directly there.And then that's just kind of how my course has progressed.
But for other people, that might not be the most appropriate way to go about it.So we just sort of talk through that in that chapter.And then I interviewed my current doctor, the scleroderma director at Yale.
And I wanted her to provide her own insights as a physician in terms of what is important
from a physician perspective, particularly for those new patients coming maybe for your first or second visit, where everything's so new, maybe you haven't even received a diagnosis or you just did and you're swirling with questions, what is it that the doctor wants the patient to come prepared with?
You know, so things like bring all your tests, all the visits, all the things that you've done so far since your symptoms started to give me, the doctor, the most and the best opportunity to see everything all at once and have a kind of a broader perspective as to what's been done and can kind of narrow the focus down from there.
She talked about being involved in research and the importance of research, particularly with autoimmune disease, because there is no cure currently for any autoimmune disease.
There may be periods of remission for individuals where the disease activity has slowed or stopped. and things are just kind of stable, but you still have the disease.It never goes away.And so she talks a bit about the value and the role of research.
And so we sort of just kind of discussed several of those key areas.And then after that, I talk about, you know,
different lab tests, different procedures, things that are, again, are going to be done based off of your symptoms and which disease they're looking at.
And then I really, after that part, I really kind of get more into the personal element, you know, where I share more of my story and going through all of the previous chapters, you know, here's where I'm at now.
These are all the things that I do on an annual basis perhaps, or, you know, but I talk a lot more about what is, how am I actually feeling at this stage, you know, where am I mentally with this whole process?
And I talk a lot about the role of mental health and how it impacts how you're actually physically feeling and how important it is to make sure that you're integrating all the right providers in your medical care, including mental health providers.
You know, we're seeing this so much after COVID, you know, sort of the post COVID effect. with mental health issues sort of just rampant.
And when you throw, you know, a chronic progressive illness on top of things, you know, it's you're bound to have more stress, more anxiety, maybe depression, you know, and just needing to talk through that.
So I definitely spend a lot of time focusing on that. I spend a good amount of time focusing on, again, being a good self-advocate and really fighting for what you deserve and what you need and how to go about doing it without
maybe pressing the wrong buttons with your providers and, you know, doing it in a, in a professional sort of manner, you know, you don't need to be combative with your doctors.
If you disagree, you can explain your case and say, well, you know, this is my body and this is how I've been feeling over X amount of time really think that we need to look a little deeper or in a different area?And can I get a referral?
Can we do this test?So just kind of walking through that with individuals and helping them to understand that being your advocate is the best thing you can do for yourself for the duration.Because at the end of the day, all we have is ourself.
And if you can't explain what you need to somebody, how is anybody else going to be able to explain it on your behalf? And then after that, I interviewed a couple of patients with different autoimmune diseases to talk about their journey.
You know, I used the same sort of five, I think it's five questions that I asked each one.And again, mostly to help the reader, the individual that's walking their own journey, to feel validated, to feel
again, seen and heard and that they matter, that we believe what they're going through and sort of just kind of providing a little bit of support and encouragement and hope to the reader that they're not alone in this.
And all this while I'm giving tips and recommendations on what has worked and maybe what hasn't worked for me throughout that entire process, through each one of those phases or different stages of their illness.
And again, just really trying to be that support and that resource and encouragement for them to
fight for their needs the best that they can and hope that that's going to be enough for them to live a healthy, well-balanced life with autoimmune disease.You can't just disregard it.It's always going to be there.
You have to integrate it into your life.But it shouldn't become your identity.And that's one of the main focuses of the book is I don't want this to become your identity.Because it's not.Your disease is not who you are at your core as a person.
There's so much more to us than any one thing, even just within your career.I am not who I am in my career.I'm not my job title.So it's the same with illness.And unfortunately,
it becomes so overwhelming at times, where all you're doing is going to doctor's appointments and having tests.Some people are going to the hospital a lot.
You know, it can be so all-consuming sometimes, where that identity sort of just falls on you, and you just
And you forget yourself, you can't forget yourself.
You do, right, yeah.And so it's really important to stress, you're not the disease.The disease, you're an individual living with the disease.And you can't forget who you were, what's important to you.Keep fighting again for what you need.
That's really what it comes down to.
Yeah, I love how you mix just the research of it all, you know, you try to put it in layman's terms, the considerations, the reminders, because most people may see their fight as only against the
whether it's your autoimmune disease or another one, they may just see it as the fight against that.But there is that need to take care of yourself.It's not just the physiological impact that it has on you.
But I love the fact that a big piece of this for you in the book is talking about mental health as you react to what you're going through and to stay ahead of that so that it doesn't get worse.
Absolutely.And, you know, I mentioned that several times in the book because, you know, personally, I don't mind talking about it, but I have gone through therapy. several different points in my life.
And, you know, I thought, okay, well, once I go through it, I know the tools, I know the resources to use in the future, if I are to sort of fall back into this or get stuck or feel like I'm still in this place.
And so I remember kind of a funny story, but I was at physical therapy one day which I see PT, you know, weekly, they're like my lifesaver.And so I get to know the therapist really well.
And I was really struggling, again, this was last year when I had all these, you know, pretty significant new diagnoses thrown at me, you know, some significant systemic problems.
And so I was really kind of struggling with it and kind of coming to terms with all of that. literally my entire 40 minute appointment at PT was her talking to me about it.I didn't even bring it up.
She asked me, you know, she must've seen like the furrow in my eyebrows because I was in pain and I was frustrated and I just looked anxious. And she just asked me, how are you doing?Like, what's, what's going on?
And, you know, we talked all about different mindfulness practices.And it's not always just therapy that you need, but it's integrating all these other activities.
And so I wanted to make sure that I talk about that in the book, that even as somebody that's gone through therapy, it took somebody else to point it out to me again. saying, hey, you know, there's more here.
Let's maybe, maybe you do need to go back and re-examine this and walk through it again.And, you know, oh, and also there's like a hundred other techniques that you can use.And so.
Yeah.Cause the therapy that you go through, the person that you are, when you go through therapy at one point in your life,
even as good as you may take up that therapy and use its practices, a year down the road, it's different circumstances, you're a different person.
So it makes sense that you would have to go back just based on who you are 10 years down the road, the new circumstances you have unfolding in your life.So that makes sense.
Yeah, no.And it's valuable at any time in your life just to kind of walk through where you are with things.And it just helps to realign your life, rebalance things, and reprioritize.And so I am definitely a firm believer in it.Yeah.
And it's like you said before, when you're with your friend, you're like, oh, I have this headache.And you don't go into all the things. we don't, when we catch up with somebody, that's typically not the stuff we go into, maybe with certain people.
So I mean, you have to find that person where you can really share.And they can ask, they can be curious, they can be vested in your wellbeing.Yeah, you may have friends.Yes, you may have best friends.
But obviously, therapy is a different level of just work.
It is.It is work.It's hard.It's not easy going through therapy.You're going to be confronted with a lot of things about yourself that you never even knew.
It's amazing what we're scared of in life, right?Amazing what we're scared of in life and nothing in the end if you experience it.I haven't gone to therapy.
But even just talking to my guests on here, thinking, and I ask all these questions about childhood and who you were as a kid then, because I'm curious how it rolls up into who you are as a person.
And we've talked about disruptions and traumas and what we've experienced.And you start thinking about the programming that went into who you are today.
Any fear that I've ever had in life is nothing touches the, not fear, but just the wide eyed reaction to just looking at who you are as a person and who you've been as a person.That's the scariest thing to face is yourself.
It is.And you know, it's funny that you should, you sort of talked about going back to your childhood.So there's this concept in,
know, therapy and kind of the behavioral health space that adverse childhood events really do influence more than just your behaviors, your thoughts, and your attitudes, but it actually influences your physical health.
And they're finding that, particularly with an autoimmune disease, that any kind of adverse childhood event that you had if it was traumatic enough for you to experience and go through that, whatever it was, your body holds onto that.
Even though you may think you've repressed it, you've gone through it, you've worked it, whatever, your body has the potential to still hold onto that trauma and cause physical harm, which is just fascinating to me.
And I think probably if you were to tell me that in, before my diagnosis, I probably would have dismissed it as, yeah, okay, whatever.
But the more I read, the more I'm invested into this and looking at things more holistically, I definitely see some value to that.And so it's just, it's interesting.
And so it really is helpful to kind of take a step back, take stock of what's happened in your life, all the good, all the bad, and everything in between and really kind of look at it and be like, okay, wow.
Maybe I didn't deal with that the right way.And why?What's the root cause?
We're essentially the same age, right?Same grade in high school.And we're still learning all that.You're still really it experiencing these eye-opening lessons in yourself.
When you were talking about your body and the physiological impact that such traumas can have on you, it calls to mind a book that somebody else has mentioned, when we talked about this kind of thing, The Body Holds the Score.
Have you read that, Melissa, at all?
I haven't.I have heard about it.But no, I haven't read it yet.
Yeah.I got to get into that one just because in this kind of conversation, when you talk about that impact of something that happened so long ago and you think, oh, that's, that's fine.I closed the door on that one.That's a different chapter.
And this book always comes up speaking to that specific theme that you're talking about.
Yeah, it's a fascinating science and field to study right now.And like I said, I do believe that there's some elements of truth into that.
And therapy is just one way to attack it and really to kind of dive into that core and the root cause of some of that.And perhaps once you go through it and once you've actually adequately dealt with the emotions that are attached to that,
maybe there might be some improvement in some of your physical symptoms.I don't, I don't really know.I mean, all I, all I know is what I've personally experienced.
And anytime I've gone through therapy, it hurts like hell when you're going through it.Um, but once you're on the other side of it, it's literally a weight off your shoulders.
You know, I, I literally remember being weighed down, you know, my body posture was, was poor. or poorer.And then once therapies, once I finished and I've graduated that time around, you know, you're standing at the door.
I don't know.It's just, it really is, you literally have a physical change in your body, or at least I have.
I can believe that.Even though I've never done it, I think I will do it just because I'm at a different point in life.Circumstances are different.It's just very weird.
But I can imagine it is just because, and these conversations are no substitution for therapy.I'm not saying that at all.But there are times where I've shared of my life based on what's going on in the conversation.
My guest shared something on my, okay, let me throw, you know, let's learn about each other in speaking certain things out. it's incredible how you feel when you stand up.Like I've never spoken to anybody about that.
It's never come up, or I've never related to somebody who's had gone through the similar or same experience.So I can only imagine when the work is deeper, longer, more regular.
But even just in that quick conversation that I may have had, and it's happened a few times, opening up about those things from childhood and how it impacts me now.It's incredible, like just speaking it out.It's a little easier to breathe.
There's a lighter weight on your back, on your shoulders.So that's a great point to make about the power of therapy.And, you know, don't think that you have it nailed, even if you graduated once, because you're always evolving, always changing.
Absolutely.Life is always going to throw things at you.And like I said, I thought I knew the tools, and I do.But just things get in the way.Yeah, it does.And it's sometimes not at all front of mind when you need it.
It sometimes takes an outside person to look at you and say, you don't look good.Like, what's going on?
You know, and so it's it's really helpful to have people in your life that can speak to you like that and that you're open to, you know, that you're open enough, open minded enough to receive it, you know.
And so, Melissa, when it comes to the authors that I have on the series, I'm always curious in writing this book, what changed in you or what evolved in you?How did this book change you getting it out there?
You know, for me, I think it was more of a cathartic journey for me.In this book, I am the most vulnerable I have ever been to anybody.I open up so much about mental health stuff, the struggles that I have faced.
you know, all of the, you know, I don't share every single intricacy of my journey, but, you know, there are things in here that I probably never told my mom, you know, or my best friend.
And so it was sort of kind of funny when, when I finished writing, I had my mother and my sister read it because I put some information in there about my dad's death.And I said, are you okay with this?
Like, I need to make sure that I'm not going to like step on any toes or cause any issues, but
I, you know, they, they both kind of came to me after and like, wow, there's, I didn't realize, or I didn't recognize how, how much this actually impacted you or, and so, um, yeah, it was, it was definitely, um, a cathartic journey for me, um, helped me again, kind of come to terms through things.
So as I was writing the book and as I'm going through these personal experiences, like I said, about last year, um,
It opened my mind and it made me realize you've been preparing so long for this and pushing so hard to get a diagnosis and seeking answers, but you didn't prepare yourself for living with it. And helping writing the book helped me.
It prompted me to push through that piece and really start looking at, OK, well, how do I how do I do this and how do I do it well?And so I think that that's that was really helpful for me.
And I mentioned many, many times in the book where I'm explaining something and encouraging somebody to look into the particular therapy or recommendation.And, you know, I always say, I'm speaking this over me as much as I am over you.
Like this, this is as much for me as it is for the person reading it.So friendly reminders.
Yeah, it's interesting what you just shared.It echoes a conversation I had with a different author where The people that she had read it came to her and they're like, the closest people in her life.They're like, I had no idea of most of this.
You know, from the outside, you seem so well put together, so resilient. So she and I got to talking, and it's like, yeah, there is, there is a resilience that maybe people see, you know, the person's plugging along.
But I mean, like we just said a few minutes ago, you're not going to share every little detail of where your mind's at.So it's almost like that definition of resilience.What, what is it?
Is it, you know, what you see from the outside that I have it all together?Or that I may be falling apart or questioning myself all along the way and still pushing ahead.It's like there's a few definitions.
It's like that public and that private resilience that you go through.
Right.Yeah, absolutely.I agree with that.
And it's it's I think it's it's a it's a process in and of itself to get there and to kind of figure out what that looks like for you, because what what your idea in manifestation of resiliency is might be different from my own.
You know, it doesn't always have to fit a particular definition, because it's going to be influenced by everything in your own life.You know, so.
Yeah, absolutely.Melissa, so in starting to wrap up, there's just a few more questions.Now that you got this book out of the way, and I know, I realize it just came out,
Did the writing bug bite you in terms of, do you have a general idea of what kind of direction you would want to go in for your next book?
Just general.I don't know.Yeah.I've sort of joked around saying, no, this is a one and done.This is all I have to say.But I don't know.Like I said, I enjoy writing.I enjoy the process.
I'll say that I didn't necessarily enjoy the publication process so much.
The writing was was fine and it was it was good.It was therapeutic for me.Yeah.And it didn't take that long.You know, I finished writing the book in about six months.The last year and a half was all publication process.
You know, that that back and forth with the editing team and such. But yeah, maybe, again, I'm gonna leave it up to God.If he's got more for me to say, he's gonna have to show it to me.And I don't wanna write just to write.
I'm not in it for the money.I know I'm not gonna make the investment or I probably won't make the investment back that I put into this.And it was never about the money.
It was always about getting the information to the people that needed it and that would be blessed by it most.That was my whole purpose for writing it.
Yeah, what I tend to hear from the authors, like the first time authors is like oh yeah there's a book in there but I just got to get, I got to pump myself up again, not to do the writing but that back end, the editing and everything else that goes along with it.
What book has inspired you or made an impact on you?
I think probably first and foremost, the Bible.I am Christian, and so I definitely read that often and adhere to a lot of the teachings.
And outside of that, I tend to gravitate towards books that are either autobiographical or some sort of a memoir-based book of people
likeminded individuals to me, where they see a problem, and they, they immediately have a potential solution, and they, and they go for it.And they, they apply that solution, and it's that, that story of how they met that need, that need.
So, you know, read a lot of books about that.Leadership books, I'm always interested in how do I be a better leader and understanding teams and the dynamics of teams.And so wanting to constantly educate myself.
And then, you know, every once in a while, I'll throw in some, you know, silly fiction books, just to kind of get my mind off of things.Sometimes, like no brainer stuff, just totally, that's, that's the phase I'm in right now.
I bought a Kindle last year, and I'm just obsessed with it.I've never read so much in my life.And I love it.You know, I hardly have the TV on, you know, when I'm home.And it's just, it's, it's been a great sort of mindless
way to just kind of detach a little bit in a crazy world.
Yeah.A bit of escapism.Yeah.Just a bit.
And then wrapping up, Melissa, what are you up to these days?Is there anything that you want to share?Anything I might not have asked?Anything at all?The floor is yours.
Yeah.Thanks.So, you know, most of my days really are kind of filled.They're a bit of a blur, you know, so they're, you know, work, exercise.I do a lot of volunteer work in the evenings.
you know, church on the weekends, trying to see my friends and family.But in terms of, you know, the volunteer work, I've been doing a lot of stuff with within the scleroderma community.
Because scleroderma is such a rare disease, there's for probably about the entire course of my disease up until last year, I'd only met one person with the illness.And it just happened to be a patient that I took care of.
for like four hours and then she ended up passing away.And then I never met anybody or talked to anybody or really heard anybody else talking about the disease until I started presenting the symptoms.
And so, I've kind of taken this on as my passion project.We're trying to get the word out, do a lot of awareness and advocacy work. within the space to make sure that the public hears about it, that it's not, that it doesn't remain invisible.
So it kind of goes back to the book a little bit.So every year, June is called World Scleroderma Awareness Month.And then there's a particular day in June, I think it's always on the 29th, where there's just more advocacy being done.
So the last two years, I've gotten the governor to produce a proclamation declaring either June 29th, World Preparedness Day, or sorry, World Scleroderma Day, or the month of June.
I've tried to lobby some buildings and cities to get the buildings lit up.So the sort of awareness color for scleroderma is teal.So there's, is a nationwide organization that helps to kind of promote some of this.
And so I've been able to work with them and try to get things kind of lit up and teal for the month of June.I've yet to be successful with that, but I did get the proclamations this last summer.
My doctor and I were interviewed by Channel 8 News to talk about this.June is being Scleroderma Awareness Month and to talk a little bit about what we're doing as a at Yale as the scleroderma program.
And so myself and their nurse manager are working together to start up a new support group for patients that have scleroderma in Connecticut.And so it's a needed something, again, an area of need that hasn't been in place for many years.
And so we're going to be co-facilitating it.So that's a brand new process.
So I'm doing a 12-week-long training on how to lead this group and how to really kind of deal with all of the aspects of living with a life-limiting or potentially a fatal illness. everything that it brings with it.
All the goods, the bad and the uglies.So that's where most of my time is being spent.And then I'm also working with another local scleroderma foundation up in New York where their focus is on It's called interprofessional education.
And basically they're taking patients as the educator and basically convening like a workshop where the patients are educating rising medical students, nursing students, physical therapy, occupational therapy.
So basically all the different disciplines in healthcare within, you know, most of these kids are in their master's degree program.
And so just before they graduate, we're there to show them, hey, look, there's this sort of rare illness that you'll probably never see in your career, but in case you do, this is what it looks like.And, you know, this is how to support them.
So it's a really unique approach in having the patient be an educator.And we do have providers there that, you know, give the scientific in the medical updates and sort of go through a case study.
But I really enjoyed participating in this the last several years. So I just, you know, submitted my application to be a board member for that organization.So I'm getting, you know, again, more and more involved within this community.
You know, it's just another area.
Right.Just another area to help.
Yeah.No, and I think that community is very, very lucky to have you just from your innate characteristic of wanting to be a caregiver, just having that ability.I think there's a difference between
going to school to try to learn that and really having it innate to who you are.
So I think they're lucky to have that, lucky to have obviously your training as a nurse, emergency management specialist, and now your experience with your autoimmune disease.
Yeah, because I just think the voice that you've put into the book from what you've shared today is just great so that they advocate for themselves.They feel seen.
It's just huge to know that something like that can feel isolating unless you realize the resources that are out there and the people that want to help.So congratulations on the book.Thank you.
Thank you, and it is, if anybody's interested in it, it is widely available online.
I'm working on trying to get it into some of the local bookstores here, but Barnes & Noble, Amazon, you can just Google my name with the title of the book, so you can just do Invisible.
It's getting popular enough where it's populating with just that rather than the full long title, but You can search that way.
I do still have copies left, so you can always email me and I can send John the details for that and he can post it on Shonan.
Absolutely.Anything you want me to share, any of the programming that you mentioned, obviously I'll share the link to get the book.Anything at all, I'll share wherever and whenever I can.
And, you know, share the word, you know, if you have other people that have autoimmune disease or struggling through figuring out what's wrong with them, you know, this, this book, while it is focused on autoimmune disease, it really can be geared towards any illness, you know, because it is the steps are
just like any other illness that you might face.And so when to go to the doctor, what are the symptoms, you know, what are the tests, you know, it really does translate over into other areas.And so it is definitely helpful.
And I think it's also really helpful for family members to read it too, because it helps, especially with autoimmune disease, and with
invisible types of illnesses where you can't externally see what they're going through and the symptoms that they're feeling, and you can't feel what they're feeling.
This is a way that the family members can actually understand a little bit more into what does day-to-day life look like, and just gives them maybe a different perspective.
Yeah, some insight into that experience.
And again, the book we covered was Melissa's own, Invisible, A Nurse-Turned-Patient's Resource to Living Well with Autoimmune Disease.Melissa, thank you so much for sitting down with me.
Thank you, John.I really appreciate it.Good to catch up.
Absolutely.And if there's anything that I might have missed, there's so much for her to share, limited time.But if there's anything that I should have asked, you feel I should have asked, please reach out, let me know.
I'll reach out to Melissa, see what kind of guidance, insight, knowledge that she can share back with me.In the meantime, thank you for watching.Thank you for listening.And I'll talk to you soon.Take care.Bye.
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