Living with the Diagnosis: A Patient Advocate Shares Her Journey with Scleroderma

Video Transcript

Todd "TJ" Keitz: Welcome, everyone. I'm Todd Keitz, founder CEO of My Care Friends, here today with Joyce Griggs, founder CEO of the United States of Healthcare. We've known each other for a few years and have come together to create a collaborative program between our companies. The program focuses on women and autoimmune diseases.

In this program, we are looking at a myriad of related topics, from issues that women face in getting to the diagnosis, to helping women advocate as they face their disease, to inspiring stories from the women who battle those diseases each day. It's with this in mind that we are incredibly excited to have Meghan Davis with us today.

Meghan, like my mom, is a scleroderma warrior. Her journey has been fraught with many challenges that women with autoimmune diseases face. Yet it's also one that has led her to become a powerful advocate for other women who are battling. Meghan's motto, Powering Life Possible, is not merely a motto for her, it's a way of life.

Today, we will begin with Meghan providing a CliffsNotes version of her battle. We are going to focus on her motto so that other women can benefit from the wisdom she has gained through her journey. It's her mission to instill hope, save lives, and raise awareness. And our goal today is to have you walk away inspired by Meghan and today's conversation.

Welcome Meghan.

Meghan Davis: Thank you. Thank you, Todd and Joyce for having me here today. I, I appreciate that. And yes, Powering Life Possible is something that I live by every single day. I am a scleroderma warrior and my journey has started over six years ago, but I am now five and a half years old because I had a stem cell transplant.

So I'm excited to share my story and my journey with you all today and continue to instill hope and faith into those that are going through scleroderma or an autoimmune disorder disease and are looking for the answer or answers.

Todd "TJ" Keitz: That's great. And can you provide us a little bit more of a brief overview of the, of your journey and the importance of recovery for women with autoimmune diseases?

Meghan Davis: So back in January 2018, I had a healthy son. I was pregnant and gave birth in January and my pregnancy went smoothly. And immediately after following having the birth of my son, I went back to my normal living. I was an athlete prior to scleroderma and during my pregnancy and I started my journey of working out again.

And about eight weeks after having my son, I decided to get the Mirena IUD birth control. And then within two weeks of having that Mirena put in, I started developing some signs and symptoms and I wasn't sure what it was. So with me and my gut feeling, I went back into my GYN and I asked to get the Mirena IUD taken out. And after that, my signs and symptoms that I was developing continued. I started to get foggy brain, I started to get swelling in my hands and my feet. My skin started to get extremely tight. Um, I started to get paralysis when walking. Very fatigued. This was not normal for me. I was an athlete prior to my pregnancy. I was an Ironman. I was a marathon runner. I was a, um, a body builder. I did everything possible. Fueled my life, my body correctly with, um, the right, correct foods. I was a nutritionist. Um, so I knew something was wrong with me and I went to the doctor and the doctors would say to me, "Oh, you just had a son. You were just, just had a baby. Uh, your hormones are changing or you're washing too many bottles. Yeah. Your hands are just a little sore, you know, give it some time or, you know, nobody was really listening to me and what I was trying to say to them with these symptoms that I was experiencing. It was not normal. And I, I know my body as an athlete.

So as time went on, we're talking six to eight months, I was rapidly decreasing the way of life. I was turning to stone. It got to the point where my mom was taking care of me and my child. I could no longer care for my newborn baby. I couldn't open baby food bottles, um, to put, uh, food, I couldn't change diapers, I couldn't get up in the middle of the night when I heard my son cry, I was in excruciating pain, and nobody could tell me what was wrong with me.

I saw multiple doctors, they told me to change my diet, which I did, and which was surprising to me because I ate so clean. And, you know, they told me to eliminate gluten and dairy. Well, I had already done that because my son was having acid reflux issues as the baby. So there was a big unknown, and the blood work was not telling me what was wrong with me.

And finally, as my mom wheeled me into the, uh, my primary care physician, they finally looked at me and said, there's something wrong with you. You can no longer walk. You can't raise your hands up. You can't wash your hair. You can't brush your teeth. I think I know who I need to send you to. So my physician sent me to a rheumatologist and thank God he stayed open that night because my mom took me over to him and when I walked in the door, the rheumatologist looked at me and said, “You have rapid diffuse scleroderma” by just looking at me.

And I had no idea what that meant. I had no idea what scleroderma was. I thought, wow, this is great. What's my next step? So he looked at me and said, you need to be seen ASAP and you need to go down to MUSC, which luckily I live here in Myrtle Beach, South Carolina, and MUSC is right down in Charleston and they are leading the way of scleroderma research, right? So I'm blessed that I was very close to that. And with that diagnosis, um, I was declining, like I said, rapidly. I, I was luckily able to see Dr. Frost and Dr. Silver from MUSC and started my treatment. Um, I started getting on, um, chemotherapy drugs, methotrexate, CellCept, but nothing was working. And I begged basically for my life to be saved. You know, here I am as a Ironman, a new, a mom. And I had my way of living was staying on a couch. I couldn't walk. I was turning to stone. So that's when the opportunity came where after holding Dr. Frost's hands and saying, I want to live, please, please save me. They did look at me and say that there is an option and it's new. And we think you would be a great candidate for, and that was an HSCT stem cell transplant.

So off I went to Duke for evaluation for my stem cell transplant. And after going through evaluation, I was a perfect candidate. I was young, I was healthy, I was fit. I was basically the healthiest sick person you could see with scleroderma. And that's when I started my journey of having a stem cell transplant in January 2019.

So here I am after five and a half years. I underwent the stem cell transplant and I was basically reborn with a second chance of life. Um, and I am blessed to be where I am. I put that all because of my recovery and what I did during my recovery to get to where I am today.

Joyce Griggs: I mean, I, you know, I have to say it's really, um, stunning, you know, the journey that you had to go through in order to get to a place where they could, where they could help you, that you were discounted.

And I think this is something that does happen to women because things get blamed on, you just had a baby, you are going through menopause, you are, you know, fill in the blank, you know, in terms of what's happened, what happens, you know, what happens to women. Um, and I think that, you know, one of the messages that I think is so important is to say is, if you are having trouble getting a diagnosis for something that is a question mark, you know, try to get yourself to an academic medical center, um, because those are where experts are and they're used to seeing things outside of the ordinary that, you know, we have to remember that relying on community doctors, no matter how great they have been for us as our doctor may not always be the right, the right thing. So you have just an amazing story.

Meghan Davis: Correct. Thank you. You have to advocate for yourself as a patient. You know, one of the greatest places where I found information and support was from a Facebook group. Once I was diagnosed with scleroderma, one of the first things that they say in that Facebook group is that you need to go see a specialist.

There are so many physicians out there that aren't educated well enough on this autoimmune disease and the, they're not aware of the different treatments that are available for this disease also. And we spend a lot of time in this group really advocating for, you know, doctors to be aware of what is available out there. So.

Todd "TJ" Keitz: Yeah, I think I want to just one more point about that. Totally agree. And that's something we had to do with my mom as well. I think it's important for the audience, the viewers to keep in mind that a lot is expected of doctors. There's a lot expected of all doctors, whether they're community doctors or at the best-known teaching institutions. Keep in mind that there are thousands and thousands and thousands of diseases, of rare diseases. That it's impossible for any human being to know everything about all of these. And that's to Joyce's point, it's so important to get to the specialist and your point as well, Meghan. It's just so, so important to try and get that. Try to go on to the groups that are online specific to a disease or a category of diseases, and see what's being said there. And that's a really good place to start. So.

Joyce Griggs: What we wanted to talk to you about today was, okay, so you get your diagnosis. Now what? And one of the things that you have mentioned is the importance of following doctor's orders. Now you've had a stem cell transplant, so that's quite a serious thing. Uh, and we're just wondering if you could talk a little bit about some of the highlights of following that medical advice that you got from your team at Duke.

Meghan Davis: Correct. Thank you. Um, yes. Like I said before, I'm here for a reason and I believe it's that journey and recovery. And I was, Duke is top notch. And when I went in for my transplant, I received a binder. And in this binder, I say it's the Bible of Recovery and it's given me information, um, to follow and rules, whether it has to do with, you know, consistency and getting onto a routine. But till this day, as I stated, I'm five and a half years old with this transplant. I still carry this binder around. And the reason why is if there's anything that is necessarily wrong with me, it comes with me to that doctor and really following the rules is important. So if anybody is going through a transplant or if anybody reaches out to me and they've just recently been diagnosed with scleroderma or an autoimmune disorder disease, I say to them, listen to your doctor.

If the doctor is telling you to do these things, do that because you cannot rush recovery. Okay? Everybody's journey is different. My journey was completely different than the, you know, number two and number four that came out of the transplant at Duke. But by following this Duke care binder, I had certain guidelines to make sure that I didn't poke the bear or trigger, uh, you know, the, the autoimmune disease to get, uh, flared up in my body again, but it was really just to help me stay consistent with a routine and continue, you know, to, um, just follow my doctor's orders. It's very important. I don't, to me, there are, there's certain rules that you just can't break during this journey. So.

Joyce Griggs: Yeah, the non-negotiables.

Meghan Davis: Right. And, you know, even though it's been five and a half years, I still follow those, you know, you have some guidelines that you'd need to follow within, you know, the first weeks of having the transplant, the first three months, the first six months, but this is something that I've adopted, you know, into my lifestyle for the last five and a half years. It becomes a habit. And, you know, after 21 days, this habit becomes some part of your life. And that's part of Powering Life Possible is, you know, following these rules. So that's my number one advice to anybody that's going through any part of their treatment plan is to listen to your doctors, follow the rules.

Joyce Griggs: Follow the rules. I think that that's really great advice.

Todd "TJ" Keitz: Then there's another very important topic. This can be said for anybody, but certainly in auto, autoimmune diseases, which is physical therapy and the healthy eating aspect of it, um, it'd be great if you could talk about the importance of attending those physical therapy sessions, um, as ordered, as you had alluded to, because how important that is to maintain mobility and function.

Meghan Davis: This, this is the number one for me, you know, coming in as an Ironman, getting diagnosed with rapid diffuse scleroderma, and it just taking over my life. Um, my goal after transplant was to get back to who I was prior to scleroderma and even prior to, you know, having a baby. And it was so important to get onto a routine from a, just to keep my movement, going for a walk, the basic, you know, whether what your goal is after having a transplant, but there's so many different types of therapies that you need.

It was a full-time job for me being released. What, what you need to understand is this transplant isn't just, you have a transplant and you're, you're good to go, right? Everybody's at a different stage. I, however, was bedridden, needed assistance, you know, going to the bathroom or, uh, you know, going up the stairs. But, you know, when they, they, they recommended me to do hand therapy. Uh, uh, going to see massage therapy, mental therapy, uh, you name it, any type of therapy I was doing and I was doing it every single day, became a full-time job to me. And with aligning with the therapy was eating healthy. You know, you get one body in your life. However, I feel like I've gotten the chance to have two lives, right? So with this second chance of life, I was going to fuel myself correctly. And that's something that I live by anyways with what I do for, for a job. Um, but you need to fuel your body correctly during this journey. You cannot fuel yourself with sugars and processed foods because you need to move forward with, with your movement and all of this is, you know, compatible to be together for success in, in, um, in recovery.

You know, one thing that it's sad to see, but you will see it, is that you hear you are lying in a hospital bed and you have some people bringing in McDonald's. You don't want to do that. You need to put yourself with protein, vegetables, um, fruits. You want to fuel yourself for this journey that's going to lie ahead for you. So it's very important.

Todd "TJ" Keitz: It is. And can you talk a little bit more, you alluded to it, eliminating sugar and processed foods, how that ties into the reduction of inflammation, which is such a huge part of autoimmune disease.

Meghan Davis: Absolutely. Absolutely. Sugar, sugar and inflammation just don't go together. It's very important to protect your glucose levels during this journey and, and flaring up, you know. And even now to this day in recovery, you know, if I eat something that is, has a high level of sugar or is processed, I don't feel good. So why would you put this into your body when you're almost at your all-time low? I mean, I was at rock bottom day one of being reborn again. So it was very important to me to fuel myself, you know, with the proper protein and eliminate those foods so I could heal and build muscle and get back to who I was and be able to not be a couch mom, you know, just being able to move correctly. Sleep better, you know, all of this stuff is combined together for powering yourself life possible here. So food is medicine, I like to say.

Joyce Griggs: So this is such, it's such great, it's such a great tip, because whatever we can do to eliminate sugar and processed foods from our diet is just so important for health overall, and certainly to reduce inflammation. I just want to say it again, because it's so important.

Meghan Davis: And so important to be consistent with it, especially with your rehab. You know, I mentioned that it was a full-time job, but there was times that I didn't want to go, but I knew how important it was to go. You know, there were some times that I didn't go. I needed, I knew that my body needed to sleep, but I mean, I was in rehab at for up to six, six months to a year. And till this day, even though I'm five and a half years out, I'm not afraid to go back into therapy, hand therapy, even if I need it, you know. I had a lot reverse with my transplant. You know, I went in with a skin score of a 49 out of 51. It's one of the worst, worst skin scores you could possibly have. Today, I have a skin score of zero, you know, some of my doctors try to say that it's a one or a two because of my hands can't necessarily make a fist. But deep down inside, I know that it's a zero. And that's because I, you know, got off the couch and I went to my therapy and I fueled myself with that. And it takes some work. You can't expect results by just sitting on the couch and just waiting for the results to happen.

Joyce Griggs: Yeah. Small steps consistently taken leads to remarkable results.

So we talked about the physical. What about like the mental? So like a lot of what you're saying takes a lot of mental strength. Um, all these things, you know, and what are some tips that you might have about, uh, mental health, mindfulness, uh, managing the stress, and also just creating a sense of, um, okay, I'm going to, you know, I'm going to do this.

Meghan Davis: So when I was presented with, you have to have a stem cell transplant or you are going to be six feet under, right then and there. That's when it clicked. I am going to do whatever it takes to be a mom and to live my life. There was, dying was not an option. And that's what clicked on immediately for me. I felt like everything that led up to this moment, I was trained, as an athlete, everything that I was training for was for this moment, was to beat this disease that has no cure, right? I was going to do whatever it took. So yes, that switched on there and going through the process of the transplant, I had nothing but my son and my husband and my family in my mind. You know, I was going getting blasted and I say blasted because it was full body radiation. I was getting blasted with chemotherapy and radiation at one time, and I would have to say my son's name over and over and over again, not to quit. And, you know, he was just nine, 10 months old, and I wanted to continue to be a mom.

But one thing that's really important is after the transplant, you go home and that's the hardest part. I can say to you both, I will do this transplant a thousand times because I would, I would do it over again. If I got, if it was active again, I would sign up tomorrow to go through this transplant to get the life that I have today. But nobody talks about when you go home, what happens. We talk about all the signs and symptoms of what can happen to you during the transplant, but that's not talked enough, right?

I was an athlete. I ran prior to scleroderma to relieve stress. I was a runner. So when I was stressed, I would put on my running shoes and go out. I couldn't do that. I couldn't even stand up. I was still in a wheelchair. So, you know, exercise was not a way for me to relieve the stress or the unknown or the fear of, of the fear of scleroderma coming back or if I was still going to live or what was going to happen to me.

So I actually admit to not wanting to go on an antidepressant because I felt like I would be weak. I thought that it meant that I would be weak. And four months of being home and crying and sleeping and battling with myself, I knew that it was time to talk about that, mental health. And my doctor went in and said it's time for you to go onto an antidepressant to help you get back to Meghan Davis. And so I did and I was very happy that I did because I got my life back. I was able to go into the rehab, the therapies and you know get back into just normal day of life and that fear of the unknown started to fade away.

And I just think that if anybody is going through this process, ask for help. It does not mean you are weak. It actually means you are strong. Asking for help makes, it means that you are stronger than the person that's not asking for help. And that's something else that I say to my warriors that are going through this or get diagnosed.

Follow the rules and ask for help. And it's okay to be on an antidepressant. And, you know, I talked to those that are getting ready to go home and I say, Hey, ask your doctor about, you know, an antidepressant or what else can you do if you're, if you don't want to go on an antidepressant, make sure that you find that time to download a meditation app, take a moment for yourself. What is going to help you and your mindset during this recovery phase. Is it painting? Is it reading? Is it talking to a loved one? It's not always medication, but for me, I had to turn to medication. There's so many different things out there to help you. So.

Joyce Griggs: There are many things, you know. I had a double, a simultaneous double hip replacement a year ago. And one of the things that was recommended to me, uh, were, um, two meditation apps, which were actually recommended by Blue Cross Blue Shield. They were given by Blue Cross Blue Shield of California to all patients who were going up for surgery. These were, these were for surgery in particular, one was you listen to before surgery and the other was for pain management.

So there are data that show that things like meditation, uh, can actually help to improve outcomes and the things that they saw with this, um, this particular app in particular, uh, or meditation was that it reduced bleeding, it reduced time to recovery, and it reduced time in the hospital. So these are real tangible things that are good for you. And I mean, they're also good for the insurance company because they reduce costs. And that's the reason why they give these things out. But it's, it's really worth it to look into these things. The mind is a very powerful thing. And if we can get our mind on our side, when we're going, when you're recently diagnosed with something devastating, like an autoimmune disease, when you're, you know, facing, you know, therapies that are very difficult, that are going to be difficult before it gets better. You know, the mind can be a very powerful tool in getting us through, provided that we take care of it in just the right, the right way. So I just wanted to make that point because you're making it, but it, it, it's so important.

Meghan Davis: Yeah. You know, Duke had a, had a counselor that came in to help me during this process. And I was very grateful for that. You know, that was something that, um, I didn't expect, but I became very close with her and I, till this day, we still talk. And I also, the important part here is, my sister and my dad were my caregiver and they utilized the apps, also, during this journey. My sister, you know, was by my bed every single night, and she was the one that would start the breathing exercises, sound meditation, um, and just help me soothe so I could get a good night's sleep. But long and behold, it was also helping her. So it was a double win.

Todd "TJ" Keitz: No question.

Joyce Griggs: That's beautiful.

Todd "TJ" Keitz: No question. Caregivers need that care as well, along this journey. And, you know, I myself, I use Insight Timer, um, which is a great meditation app. Um, and I turn people onto that, it seems like every week, sometimes every day I tell them about it, like, Oh my gosh, I didn't know that. And so just that little bit can be so helpful.

Which, which leads us to our next topic. Um, what's helpful, which is surrounding yourself with a supportive healing environment. And that includes people. Um, and so. Whilst the challenge, talk about that and the challenges of removing toxicity from, from your life when you're going through something that you can't afford to have that toxicity, because that just exacerbates any disease, but certainly autoimmune diseases.

Meghan Davis: This actually goes back to being diagnosed, right? You're talking with maybe some family, some friends, co-workers of what is happening to you. And some don't understand you, even from physicians, you get, Oh, it's in your head or you're lazy or stop complaining. Right? So that's why number one, it's so important for your family, your friends, and your loved ones to be educated on this disease or the disease that you may have.

You know, I had my family join the scleroderma support groups, also. And so they can understand that what I was going through wasn't just me. Others were feeling the same thing. I also introduced them to, um, caregiver support groups, too, so they had a place to go and vent, to understand, you know, how to react to somebody who has a autoimmune disorder that has no cure.

Okay. And also when I was in Duke, there was caregiving classes for uh, for my, my father and my sister to attend to help understand the process of the, the transplant journey. But then going home, that's when I realized who really was there for me during this time and who was my biggest supporter who understood, and from that moment on, I decided to gravitate to those who supported me into that journey. That's what I needed. And I believe it's very helpful in that healing process when you're going, when you're going home with that unknown. So you have to look at life, I look at life a lot different now. So if there's any type of toxicity, it's best for me to separate myself from that so I'm not necessarily triggering myself because scleroderma is rare and we don't know what triggers it. So I, I say that with the best advice is remove yourself from that situation and gravitate to people who support you on this journey. And I know that I have, that Facebook group that I talk about so much is where I tend to gravitate to, along with my family and friends that have supported me through this journey.

Todd "TJ" Keitz: It's such a microcosm of life in general, when you think about it, removing the toxicity from our lives and the people that just do not serve us well, just a little aside.

Joyce Griggs: Very true. So we can segue a little bit then into like self-care and rest. Especially rest. And how does one, especially, you know, you're a young mom and all these things in your life, how did you go around prioritizing self-care and rest?

Meghan Davis: Well, I was lucky to have a mom that stepped in and was basically the mom for my son during this process, so I could focus on my recovery journey.

Um, and you know, when you get home, your full-time job is therapy. And resting to make sure that you can get back to maybe where you were or just get to this new place in your life, right? My goal was to get back to Ironman Meghan. So I made sure that with it being consistent into my routine that I had to make sure that without doing too much, I found time for myself to really rest and recover. So by creating that routine, you need to build in that time. So typically for me, it was, you know, going to the beach, going for a nice long walk, and then eventually a jog to a run or a bike or a bike ride. Or, you know, going to therapy or going out to lunch with a friend, um, but prioritizing that with a routine is going to lead to, to success. And a routine is so important. And I even say that to my clients now, you know, you need to be consistent, it's developing that routine.

Um, and knowing the difference between rest and fatigue also, right? That's something that's important to talk about. You know, here you are in recovery and if you find yourself sleeping for two plus three hours, it might be a little bit different than the rest that you actually need for your recovery. So knowing the difference between fatigue in recovery and the actual rest that you need.

Joyce Griggs: Yeah, I mean, I think that's just so important. And you mentioned earlier, it takes 21 days, right, to solidify a habit. Is that, is that right?

Meghan Davis: It's about 21 days to break a habit for something to come consistent in your life.

And that goes with even cutting out sugars. So, and I say that to my clients every single day by detoxing yourself, you're going to, and getting into a habit, it's just going to become consistent in your life.

Todd "TJ" Keitz: Good points. Good points. So there's an inevitability that comes along with setbacks in a recovery process. And I want to clarify for the viewers that when we're talking about recovery, there's all levels of recovery that people who get to a point where you are, there are people who will will recover to a point, but if they can stabilize and be in a certain level, that's a recovery, still part of a recovery process. It's not a definitive, it's either all the way or not. There's a continuum.

So can you talk about the importance of seeking help when, when needed? You alluded to it earlier, and who is that from during those setbacks?

Meghan Davis: So when you're released after transplant, or even if you've been diagnosed with an autoimmune disorder, disease, excuse me, um, you know, setbacks, what I mean by that is, recovery has no end date. So what typically happens is, you're going, things are going well. And then all of a sudden you get a bump in the road. Maybe you get sick or maybe you develop something in your blood work, and it's not that your, your recovery has come to a halt and that's something that we mentally fear, the unknown. So you could, I always say to some, to our warriors is it's three steps forward, one step back, one step forward, three steps back. So, and honestly, till this day, you know, five and a half years, I still have those setbacks, but look how far that I've come. So I, I like to say, don't compare yourself to what you were yesterday. Compare yourself to where you were a week ago. And that's what important to also document your journey, you know, and that's something that you should be doing obviously from day one with your signs and symptoms. And most people tend to do that. They start documenting their signs and their symptoms, but that's something that's carried over into recovery is documenting how you're feeling.

So, you know, I'll give an example. I here I am five and a half years ago from my five year checkup. I had a little bit of a hiccup in my blood work. Oh. It was a little bit of a setback, but I'm still moving forward. And, you know, till this day I still get itchy and my skin is still softening. So recovery never ends, but, you know, making sure that you check back in with your physician. And I also like to say that where I, where, because of where I am today, it's because I continue to check in with my, my bone marrow transplant team, you know. They can laugh if they're watching this, they're going to say, oh, they tried to break up with me so many different times and just tried to pass me back over to, you know, my primary care into MUSC. But, you know, obviously I do my one-year checkup with them, but I know deep down inside that no one knows this process and this disease better than my scleroderma specialist and my bone marrow transplant doctor. So, with my Duke binder, I always make sure if there's anything that, you know, you know, pops up, always check back in with them first before making any decisions or, you know, following through with another doctor or maybe, you know, another medication if I need something, if I'm sick, it's always checking back with those, um, scleroderma specialists first.

Todd "TJ" Keitz: That's great. Before I pass it on to Joyce for the next topic, you mentioned something, and I want to do a little plug for another, uh, another episode we're going to be doing. Um, you talked about journaling and journaling what your symptoms are, how you're feeling, et cetera. And so we hope that the audience will check out another episode of the women in autoimmune disease program that we're doing, a series that we're doing, uh, with Tracey Welson-Rossman, who is the founder of Journal My Health, which is a wonderful app. And so I'll pass it on to Joyce from there.

Joyce Griggs: Yeah, yeah.

And I, and I will, you know, stay on journaling for just a second because you make a great point about that. It's easy. We have built in forgetters. And so as we're going through that process of recovery, you know, once there's been a diagnosis, you're on therapy, it is important to just keep a journal because things happen incrementally. And we may notice something in its earlier stage through the process of journaling versus until because we're adaptable as human beings. So the small incremental changes, we may not notice if we're not keeping a regular journal. And then suddenly you see a pattern much earlier, than if we weren't, uh, journaling. And it can just be quick notes. It doesn't have to be, uh, anything lengthy. I don't know if you have anything else you want to say about that before we move on.

Meghan Davis: I mean, it's, it's saved my life, right? Um, especially to get me and navigate me to the right physician after all. So, you know, here I am as a wellness coach. I tell my clients every single day, I can't help them unless they journal. I can't find out what is wrong with them, why they're not losing weight or why they had the week that they did unless I can see their journal. So that's something that I did with day one. And I used, at the time I was using my cell phone. Honestly, I was nursing my son, so one paper was the timing of nursing my son, and then I would on the next note, on the next part of my cell phone was okay, uh, April 16th, I, swollen legs, uh, hands hurt, headache, foggy brain. And then you could just see the consistency and then you were journaling everything from what you were doing that day to where you were. Um, how did you sleep? And, you know, I presented this to physicians and, you know, they're looking at it at first, they did what that, obviously, I had just had a baby and, but as time got on, I was able to get to the right physician. Um, and they looked at my journal and said, wow, you should have been diagnosed six months ago. So, and that's a scary, that's a scary thought, right? You know, where would I be today if I was diagnosed, uh, six months ago? So.

Joyce Griggs: Yeah, I mean that, that's a sad reality. Um, so, you know, this leads to what you're just saying, it leads to educating, you know, yourself, educating others, um, to learn more about you. I mean, educating your own doctors. Um, what are some of your thoughts about, about that?

Meghan Davis: Well, the day I was diagnosed with rapid diffuse scleroderma, I screamed and I didn't know what it was. And the very first thing that I did is I went to Google and that was scarier. That is a moment I will never forget. I can actually remember exactly where I was, where I was, when I was reading what scleroderma was and my reaction. And I can actually feel it to this day. I was very surprised how many physicians did not understand or know what scleroderma was either. And as stated before, in that scleroderma group, the first thing that they said to me is you need to get to a scleroderma specialist to get your answers and get your treatment plan. So during this journey of recovery or wherever I am, I talk and educate any physician that I can get my hands on, on what scleroderma is. So there was many times where if I had to go to the emergency room, it was quite shocking to, you know, I'm getting, trying to get labs drawn and they can't get the needle through my, my really thick skin. And I say, well, I have scleroderma and it's quite scary to know that some of these physicians have to turn around and Google themselves, what is scleroderma? So as a patient who has scleroderma, it's very frustrating and scary to me that I'm about to put my hands into somebody who doesn't know anything about this disease. That's frightening. So I've made it a mission that, and instead of looking at it like, you don't understand me, it's, I'm going to educate you on my disease and I want you to understand that it's actually not as rare as it says it is on Google. So that's typically one of my missions is to be able to change that on, you know, Google or MD, webMD or something that states that. But it's to take it, use this as an educational purpose, any physician that I can get my hands on and talk about scleroderma and how it's different in everyone.

Not everyone has rapid diffuse scleroderma. Some people can have scleroderma and have no skin effect issues, right? And they're walking around and they have these issues. So. I like to look at it as a part to, you know, teach them about this disease and the treatments, right? Um, and talk about it and then connect and then ask them, you know, do they know anybody that has scleroderma? So really just looking at it from that perspective.

Joyce Griggs: I think it's, you know, it's one of the, um, unfortunate truths of any rare disease is that the patients are the experts, uh, and that you are going to find, especially if you wind up in an emergency room, um, doctors, nurses who are not going to be familiar with your condition. And so this is a fact that, um, has to be accepted. Because otherwise, you know, you're going to be profoundly disappointed and maybe put your life at, at risk. And so I think you've even mentioned to us in other conversations, you take that binder with you, right? I mean, if you have an emergency room visit, that binder's going with you so that people can, the healthcare providers can, you know, see.

Meghan Davis: Yeah, it's, and before they even touch me, I'm on the phone with my scleroderma specialist handing the phone over to the doctor, the emergency room doctor and saying, Hi, you know, I'm a stem cell transplant warrior. I have scleroderma. Here's my doctor before giving me any type of, you know, treatment or, you know, so they're fully aware of, uh, my disease.

Joyce Griggs: And it's difficult to because we're not all um, you know, we're not all able to be that, you know, powerful and direct and you know, some of us are more reticent than others to, you know, come at authority in that way or, or seeming authority figure in that, in that way. And to, you know, just go ahead and speak, speak our mind. So that's another thing that, you know, we may have to work on if it's not our personality type, you know, to be, to be direct that way. If we're more introverted, um.

Meghan Davis: You know, and it comes to the point also that it brings back to, when you're, if you're not near a scleroderma specialist or you have, um, or may not know, right? You're, you go to this physician and they diagnose you or they misdiagnosed you and then some just stop there. If I could say anything to anybody listening to this is, don't take no as an answer and keep, you know, keep advocating for yourself with other physicians if you can. You know, keep learning, keep educating yourself and, you know, if you're not happy with one of the answers that your physicians get you, it's, it's, you're not locked into that physician. Continue to move on, continue to ask your friends and family what are some other options, you know, by really reaching out to that support group that you'd be surprised on how many, how many we've helped, you know, get them to another physician that believes in them or is educated on it better. And, uh, you can save lives that way. And that's important because, you know, those that are misdiagnosed or they're on medication and say, you know, this might not be the correct medication for them, or, you know, you're never going to get better, or, and then they can also miss that window of opportunity that I had, you know, that was, that's, I believe I was given this disease for a reason. I was also believed that I was at the right place at the right time to go through, um, the transplant so I could share that there's this other option of treatment out there. So.

Todd "TJ" Keitz: Yeah. And I'll just further that with scleroderma since I'm familiar with it related to my mom. Um, you talk about the misdiagnosis and she was misdiagnosed. There's no question about that. And they just kept throwing a drug at it, prednisone, and, uh, and that was at least for a year, who knows how much longer. She was on prednisone for years, but who knows how long it was scleroderma. I have no idea, I don't know how many people know where that crosses over and they can test, and they find out, but to your point, because of the delay, it, caused severe kidney, lung damage, and it was able to be reversed slightly, but not as it would have been had it been correctly diagnosed way back.

So we're, we're on to our final topic, which, you know, we could talk for hours, for sure. There's so much we can talk about this topic, and we have offline, but the final topic is just dovetails to what we've been talking about, and that is as you call it, embracing the long-term recovery. And, you know, so if you can talk about the concept of long-term recovery and the importance of attending regular checkups, you know, even when you're feeling better, um, and then what that ongoing journey looks like and why it's important.

Meghan Davis: So I stated that there's no end date in recovery. Everyone's journey is going to look different, you know, and my journey is different than all the other scleroderma warriors that went through their transplant. We, and we can attest to that. Everyone has a different, cause we all have a different goal at the end, right? Um, but you know, my five-year, my five-years, uh, check-in came up and I felt so good and I was saying to myself, why am I even gonna go to this checkup? I feel so good. I drive four hours for them to take, you know, all these vials of blood just to send me home and say, see in six months. And I had a wake up call. And I think that this is very important that when I went for my five-year checkup, they said, Hold on. We flagged a couple of, uh, you know, markers on these blood counts. Oh, that was a next-level feeling that that just came over. And I was like, Oh my gosh, I almost missed this appointment. And I am so glad that I went to that because it led to going through more tests to rule out, to make sure that one, scleroderma wasn't starting again, right? I feel good, but we know this disease is rare. We know that there's no cure. I may not have active scleroderma right now, but what's to say that it doesn't get started again, right? So, and maybe it would, this was a wake up call for me that they would find it sooner than what they did when I was, you know, five, six years ago.

So I believe that, you know, I went and it was a reminder that you need to continue to go to see your physicians for those routine scheduled appointments, no matter how well you feel. You know, with this transplant, it's not just scleroderma that can come back. There are other side, um, you know, other issues that could arise, cancers, um, and they need to catch that. So that's why it's very important to go back and listen to your doctors and go in for those routine checkups.

And like I said, that was a little bit of a, a setback for me, bump in the road. Um, I had to adjust some things in my recovery with my, my workout and my daily routine, but, you know, with the answer, it thankfully was all good, but it was just a little bit of a hiccup and I'm back into consistency again in my recovery process.

But I, I find that, and I say that now, it's because you never know, right? You could be feeling great, but it's definitely important to go back in and check in.

Joyce Griggs: It really is because there's the invisible, you know, it's like, how we feel is only one indication of what's going on inside of the body. And if we become symptomatic, you're way far down a disease state already. I mean, that's the thing that we don't understand because, you know, again, it's like educating ourselves about health. Um, so that's what you're saying about, you know, going in for these regular checkups, you know, there's a protocol for the timing of these checkups and the blood work and the other fluids that they may be taking and monitoring. It's, you know, they're looking for early indications, just like you were saying, markers. Um, and these are things that you won't feel, uh, we just will not feel it. So it's just really important. I just want to kind of hammer that home a little bit, uh, hard because, um, but it's like you said, I feel great. And then lo and behold, they found these markers and we had to take some steps. So yeah, it's really great.

Todd "TJ" Keitz: Totally agree. And so Meghan, thank you so much for being here.

Meghan Davis: Thank you.

Todd "TJ" Keitz: It's been wonderful to talk with you and everything that you've shared is powerful. Your, your story, your inspiration, all the wisdom you shared. I'm positive that the folks listening will be able to take this and do something with it and or and or help their loved ones.

Meghan Davis: No, no, I appreciate you both for having me on. And if anyone would like to learn more about my journey, I do have a Facebook group, Meghan's Race to an HSCT. Um, I continue to update my followers on my journey. Um, it's also a great, uh, resource to find out information on my, on, uh, stem cell transplants and, uh, you know, any type of, uh, treatment that I've had during this process. So I appreciate it very much. Thank you both.

Joyce Griggs: Great. Thank you so much.

Todd "TJ" Keitz: Thanks Meghan. Take good care. Stay well.

Meghan Davis: Thank you.