Today, survivor and advocate Meredith Cowden talks about being your own advocate regarding GVHD. As patient advocacy director of the Meredith Cowden Foundation, she has a wealth of resources to share, many of which are linked below.
(If you'd like to hear a more detailed version of Meredith's story, you can listen to Season 6, Episode 4 of the Marrow Masters podcast here: https://marrowmasters.simplecast.com/episodes/meredithcowden )
After a diagnosis of AML, Meredith received an allogeneic bone marrow transplant from her sister in September of 2001. In October, she developed acute Graft vs. Host Disease, which later became chronic Graft vs. Host Disease. She talks about the frustrating, unpredictable nature of cGHVD, and how she began looking for resources. Unfortunately, Google was not very helpful. After some collaborative work, she presented a comprehensive list of resources at the 2020 NIH Patient Advocacy Summit. The list includes peer support groups, organization that can help with financial assistance, and more.
We've got her entire list on our website here: https://www.nbmtlink.org/wp-content/uploads/2022/06/cGVHD_Resouces_2020_NIH_Summit.pdf
Meredith talks about "spoon theory." You only have so many spoons for your day- she explains. Meredith also talks about the Meredith Cowden foundation, and their GVHD symposium series going on in 2022-2023.
There's a book that Meredith recommends, written about prednisone, from the perspective of a doctor and a patient. It's called Coping with Prednisone and you can find it here: https://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related/dp/0312375603
Meredith is now 20-years post transplant and recently turned 40. We spend some time discussing how she's been able to decipher which physical elements are related to GVHD versus just getting older - something she didn't think about at the time of her transplant.
We wrap up with more practical advice from Meredith. She talks about deciding what your priorities are. What's most important to you? That can help you set a routine and find balance in your life. And it's OK to say "no" to people sometimes. Finally, be your own best advocate. Don't be afraid to speak up with your doctors and be part of the conversation around medical care.
More Resources:
The Meredith A. Cowden Foundation: https://cowdenfoundation.org/
Spoonie Day App: https://www.spoonieday.com/
The National Bone Marrow Transplant Link's updated book on Graft vs. Host Disease: https://www.nbmtlink.org/product/graft-versus-host-disease/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacylics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
Sanofi: https://www.sanofi.com/
Peg: Welcome everyone. Today, we have Meredith Cowden with us. Meredith is not only an incredible survivor, a clinical counselor, but she is a long hauler of chronic Graft vs Host Disease. She's also the patient advocacy director of the Meredith Cowden Foundation. And she's joined us before, season six episode four.
And that episode really focused on her individual story and struggles with chronic Graft vs Host Disease. So today we're going to pick back up on that. And Meredith is back to share so much more with us, an abundance of credible GVHD resources. She's going to tell us how to be your own best advocate.
She's going to share tips on pacing yourself, aging with GVHD, the importance of balance, flexibility, routine, and so much more. Welcome Meredith. And thank you for being here with us today. First, can you briefly share your story and then tell us about the resources that you have grown to know and trust during your chronic Graft vs Host Disease?
Meredith: Yeah. Hi, Peggy. It's good to be back. I really appreciate the opportunity. In May of 2001, I was diagnosed with acute myelogenous or acute myeloid leukemia when I was 19 years old. And then in September of 2001, I had my bone marrow transplant. It was allogeneic and my sister was my donor. And then in October of 2001, I developed acute Graft vs Host Disease.
And then it turned into chronic and I have had chronic GVHD since then. And I think I will continue to have it for a very long time. It doesn't seem to be going away. Yeah, it's a little bit frustrating and also just kind of a strange experience too. I think that over the years, having it, it's such like a
rollercoaster-ey kind of unpredictable phenomenon and experience. I found a website that had interviews with some patients and they were asked to describe what animal chronic Graft vs Host Disease would be. A caregiver identified it as a mosquito, always in your face and kind of just like there and just really irritating and annoying.
A woman in her late forties, mid to late forties, identified it as a chameleon, 'cause it's always shifting and always changing and it's trying to blend in and then something happens and it pops out. To me that one really resonated. And then a third guy identified it as a cat and this very like,
sneaky kind of quiet. And then it sort of freaks out. I think the way he was talking about it was that you're petting it. It's fine. And everything's going along okay. And then it scratches you, or it bites. But they all have the same kind of idea underneath them. Truly. That's the experience that it's like and in order to be able to navigate it and to be able to really get through it, you have to be very knowledgeable and very persistent in resources, support groups, people who can help things that you can do at home, just so that you can live your best life while you're living with this particular condition, as well as just to maintain good mental health so that you can manage when the cat scratches you or bites you, or when whatever happens.
And so you can stay okay. And not freak out. And so I really wanted to gather as many resources as I possibly could so that they can be shared with everyone who listens to this and that can keep going and going. So I'm going to talk about a lot of different resources and we'll go through some websites, we'll go through some apps that I found with some articles and things of that nature.
So if you don't mind, I'm just going to go ahead and go with it.
Peg: I'm going to let you do that Meredith, but I have to know what animal would you describe your GVHD to be?
Meredith: Well, I'll be honest. When the woman said chameleon, I was like, you named it? You got it.
Peg: And I know you're a cat person.
Meredith: And maybe that's why I don't want to associate cats with GVHD.
Cause I'm like, oh, but they're so sweet though.
Peg: That makes sense. Okay. And I am going to let you go girl, because I know you have so much to share. Thank you.
Meredith: You're welcome. Absolutely. I'm excited. So when I did a basic chronic GVHD support, those were the words that I put in Google search. The things that came up were not what I expected whatsoever.
I got a lot of articles that are like scientific articles. I got a lot of National Institute of Health stuff. I got a lot of hospital systems, a lot of pharmaceutical companies. I didn't see any NBMT link, BMT info net. The Cowden Foundation, I saw Be The Match, but that was about three or four pages in.
So that's not just me then. So that happens when people just search.
Peg: This is so interesting Meredith because we are working very hard at the NBMT link right now to fix this. Yeah. But you're making me feel better that it's not just us.
Meredith: No, it's not. When patients are looking for the organizations that are specifically created to help them with this, they can't find it unless they already know someone who can tell them about it.
Or if they look on like social media, Facebook that is less specific and discriminatory. 'cause then everything pops up. But I think that was one of the things that I found to be highly problematic. I think it's an important thing that we're able to share this in a way so that people can find it. Beyond doing an internet search because that adds another layer of difficulty that I think is just really disheartening for people.
Peg: I agree. And we will make sure everything that you're going to talk about will be in the show notes. There'll be very comprehensive. So don't get too caught up in the addresses cause we'll provide it that for everyone.
Meredith: Okay. Perfect. Thank you. So what we've done is when we had the 2020 National Institute of Health, Patient Advocacy Summit, Peggy, that you were part of and such a wonderful part of it, we organized, we created a resource list of as many different kinds of websites that address transplantation, but more specifically Graft vs Host Disease. That includes NBMT link. It includes BMT Infonet. It includes the Cowden Foundation. In addition to that, there's also Cancer Care and everyone offers different, and also the same kind of information.
There are some that are more focused on providing peer support. I know Cancer Care has a strong peer support program, and I know you have a strong peer support program in addition to podcasts and the webinars and all of the books and stuff that you put out and BMT Infonet they have a lot of information.
They have a lot of webinar videos with different topics, which I think can be very helpful for people.
Peg: Absolutely.
Meredith: Imerman's Angels is another one that I found to be very helpful and they are a really strong team in terms of just to like wrap around support and then Be The Match. Be The Match is really wonderful. And also it has a lot of information. And so it's important to think about what it is that you're trying to find when you go there. I, myself got easily stuck in the weeds of the clinical and the medical. And so it's important to keep that in mind and to just kind of keep going with it.
The Leukemia Lymphoma Society. I mean, there were just a whole bunch, so I can continue to talk about all of the different websites, but I think that one of the things that is really valuable is just looking through the list that we've created because, in there, there are some that are very specifically focused on funding for travel, funding for housing, rental assistance, assistance for basic necessities, like groceries that people might need assistance for.
School, all of these different kinds of things that is the financial health aspect of it. It's an expensive disease. I just have to be honest about it. It is, it's pretty pricey.
Peg: Unfortunately.
Meredith: Right? And so having this and knowing that it's chronic, you have to be able to pay for the things that you need and not have that as an added stressor of how am I going to pay for this medication or this thing that I need, or I need to go to this center that's across the country. And how am I going to get there? How am I going to pay for whatever? And so all of the organizations have so much great information and so many different resources. I really encourage people to look at that list and go through it and consider when thinking about it. What are the things that you really need and start with that.
And I just encourage people to go through. Browse. Some of the ones that we have on that list are European-based. And so if you happen to have any European listeners, we've got some in French, I'm going to butcher it. So I'm just going to let you read it. It's yeah. I'm not going to try.
Peg: We're going to have these lists for people.
Meredith: Yeah. Oh, there's Anthony Nolan. That's in London, so that's an English. And so, I mean, if people are traveling or if they're listening to this from another country that could potentially help them as well. One of the other things that I've found right now, I'm testing it out. So I don't know if you remember, but the last time I was on here, I talked about spoon theory, which is this idea of when you have a chronic illness, sort of thinking about your day and your energy as something that you can trace or that's trackable. And so a young woman came up with this. She used spoons as an example of, okay. So one spoon is like a piece of a battery. Then you go through your day and figure out, okay. This is how I feel when I wake up in the morning, I feel kind of, eh, not that great.
So that means maybe today I have 10 spoons instead of 12 spoons. So then you have 10 spoons and it's extra difficult to get ready. And so maybe that takes up another three. So then you have seven spoons for the rest of the day. It helps to kind of figure out, okay. So today with my seven spoons, Maybe I can talk to some people on the phone and maybe I can hang out with some people, but that's about it.
I can't do a whole lot else. And so I'm going to move this task that I need to do to tomorrow, and then I'll be able to do that and I'll work my way around that and plan around it. So then another person created this app. It does essentially the same thing. It just creates a visual and a tracker for you to go through your day.
And identify how many spoons it's going to take you and you can choose from the already designated lists that they've created, or you can put in your own. Like for instance, one of the things that I was doing the one day is I was painting. I put in painting and I said, that takes one spoon for me. Cause I, I love it.
Another example that I thought was interesting is that I did too much one day. And so it said that I borrowed a spoon from tomorrow.
Peg: True.
Meredith: Yes. And I think that's really helpful to keep in mind because I'll be honest. The next day from where the borrowed spoon was from, I was tired. Pretty pooped out.
And so I think it's a really good way to think about how am I going to spend my time? How am I going to spend my energy? What's the best use of this for me today? So that's one of the apps. And then another one is Be The Match. They have an app. It's called My Be The Match Community. It's specifically for patients and just, it has a lot of great information.
It's got articles. You can chat with someone. If you want to talk about specific symptoms that are going on, you can do all of these different kinds of things. And you can also speak with other people within the community. I like that they have patient support teams. They have lots of supportive articles.
So those are a couple apps. And really, I think one of the important things with resources is just using and finding as many as you possibly can. And from my perspective, that includes articles and books. When I look at articles, I look at the peer reviewed journal articles that have maybe some information that is a bit high-end. Sometimes can go over my head a little bit.
And also at the end of the day, I can get what I need out of that article, because if I'm a searching and I always searched for like the scholarly, like I use Google Scholar and those kinds of things, as well as Pub Med and different kinds of specific search engines that not everyone has access to. And also if you contact physicians, you can oftentimes ask them if they'll send the article to you.
And usually they do. And so if there's a specific topic or area of Graft vs Host Disease that I'm focused on, or that I need to know more about, because I'm starting to deal with some of these things, then I just look up articles about that. And what are people doing? What are scientists doing and researchers and the medical professionals? Because then I can take that information with me to my next appointment or to a correspondence with my doctor and say, this is the information that I found in this article.
What do you think about this? Is this an approach that we can maybe consider and try? And so that kind of steps into the advocacy bit, as well as just having that resource.
Peg: These are great tips. Cause I don't think most people would know to do this. So thank you.
Meredith: Yeah, absolutely. And honestly, I have like a catalog of articles that's just insane. There are a lot of things that have to do with patient quality of life. And what helps make it better and what are the things that really negatively impact it? And so then I can think about, okay, so these are the things, according to the scientists that help quality of life for someone in my situation.
So let me try A, B, C, and D and to get an idea of what they're thinking about as is perpetually my theme is that communication and the collaboration between the two different communities and bringing everybody together. I'll talk about books going along with the articles. And last time I was on, I mentioned that I have a Graft vs Host Disease textbook.
So I'm very nerdy about it. And there are books that are not as nerdy as that. There's one that is particularly old. I mean, I found it when I was first, initially diagnosed and I was taking a lot of prednisone. It's a book written by a patient and her doctor, they wrote it together. I actually can't remember the name of it's over there,
Peg: Well we'll add it to the show notes. Okay. We'll call it the book that Meredith couldn't remember.
Meredith: Yes, it has both her perspective, the patient's experience and it's specifically about prednisone. So I think that's important. But it's about her experience and then her doctor's experience. And then there are like recipes, oh man. There's like information about like exercises that this woman had done. And so, you know, I think that information, as well as, there are a few more books that are about Graft vs Host Disease, or specifically just about living with a chronic health condition.
Peg: And we have a book too.
Meredith: You do?
Peg: Yes.
Meredith: Actually several books and they're not all specifically Graft vs Host Disease.
Peg: We have a whole book dedicated to Graft vs Host Disease, too, that we just updated last year. I'll just put that for a second plug.
Meredith: It it's such a good book, you know, and I think it has so much great information. And even if it's you take just a tiny bit away from then you have that one extra.
Last resource that I'm going to talk about are podcasts like this. I love this podcast. I think this is wonderful. I was scrolling through all the different episodes and you have the greatest people talking.
Peg: Thank you.
Meredith: The health care providers, as well as the stories from the patients. I think it provides such good information.
And then there are some other ones that are more focused on Graft vs Host Disease, but they are also very specifically oriented to health care professional. And the medical community. ASTCT, they have a series and there was one where they had Steven Pavletic from the National Institute of Health and Kirk Schulz from Children's Hospital in British Columbia, talking about Graft vs Host Disease.
And what's coming up and like different things that doctors and researchers are focused on. And so there are several, but they're also like so focused on that particular demographic. So, I mean, you're kind of a pioneer in this, and in that, like you've started this for patients kudos to you.
Peg: Well, thank you. Yeah, we really enjoy doing them and you know, Steve Pavletic could read the phone book and I would listen, so go listen to it because I just adore that man. You know, you're so humble about your foundation Meredith, you're complimenting us here. I want to compliment you for a second on the wonderful work of the Meredith Cowden Foundation.
You guys have symposiums. Talk about letting caregivers have access to the top docs in the nation. I've been to several of your symposiums and you guys do a fantastic job. And I look forward to them all the time. And I just want you to brag for a second about what you guys are working on and on the great resource that you are to people.
Meredith: Thank you. I appreciate that. Yeah. So we're still gonna this year have the symposia series. So we have three that are lined up and we've got great people. There's one in July, one in October, and then one in January. And those are going to be the ones that are about very specific topics related to Graft vs Host Disease.
And then what we're planning to do is add on a fourth one in the spring of 2023, that is just for patients and caregivers primarily. I still want to have healthcare providers and people cause I want, the group to come together, but it would be important and valuable to have something that is very patient centric. And I also am interested in having a combination of speakers rather than just a medical professional. I would like to have a patient as well and potentially a panel of patients and medical professionals together.
Peg: I think that's a really great idea.
Meredith: Thank you. Yeah, I was, I'm really excited about it because I think then that will really, really create the conversation that I'm looking to have. And that's just the beginning. So that's coming in the spring of next year. We're planning it. We have some great ideas for topics that I'm very excited about. Great prospects for speakers. So I'm super pumped about that and looking to really expanding because of my new position, I guess you could say, this is something that is clearly very near and dear to my heart and something that I'm fully invested in.
And so I really want to grow the patient advocacy realm that we've got. One of the things that we're working towards is this resource collection that I've talked about is really have a platform and a place where this exists for people. And they can just go there, and they don't have to worry about, you know, searching or anything like that.
I just want them to be able to click on this and they'll find you, they'll find Cancer Care. They'll find whomever. I think that will streamline things. It's also a place where physicians and other nurses can go as well. So this is a plan, big plan that I've got. And then I also kind of want to grow in terms of like the information output and stuff that we can get out to patients and their families.
These are things that are kind of floating around in my brain that I've planning. I'm thinking about. So we're working towards that and got some good things happening in terms of collaboration, with different researchers and stuff, looking at treatmentsand all of that kind of stuff.
So the foundation has transitioning and kind of shifting, but I think in a really, really positive way. I am really excited about it.
Peg: Well, congratulations on that Meredith. That's terrific. I think we're going to move on a little bit and talk about aging with GVHD and I, I just can't believe how long you have dealt with this and you still have that beautiful smile on your face, but let's talk about what it's been like for you to go from being a 19 year old to a young adult, just a little past young, maybe an adult.
So you're not quite middle-aged yet though, we won't put you there. Tell us how you roll with the punches with all of this.
Meredith: You know, I was thinking of it. Last year, 2021 for me was like a milestone year, 20th anniversary of my transplant. And also I turned 40. And so like a 20th anniversary of a transplant is kind of a big deal, especially with bone marrow transplantation and with the illness and everything.
And then also there's like the general societal, you know, I turned forty. It was really interesting when I was 39 leading up to 40, I had everyone telling me like, oh, Meredith. Either your forties are your best years or they're your worst years.
Peg: Oh boy.
Meredith: Right? And I was like, this is really interesting to see, who was like, oh, it's great.
And who was like, not really, because some people were like, yeah, you know, you're stable in your job. You're stable in your life. And then you can just go and do what you want and really focus on you. And it's great. And then other people were saying like, well, this is when things start to really change in your body.
And I was like, okay, so different perspectives and different, you know, focus points. For me, you know, I never actually really, and it sounds ridiculous, but I never actually really thought about aging until I got into my like mid thirties and everything is Graft vs Host Disease. This is not me getting older. This is GVHD.
And then there was like, oh no, this is me getting older too. Oh, okay. Simultaneously, right. Oh, surprise. Like all at once. I don't know why that caught me off guard. It's so silly, but then started to really think about what does it mean to age with chronic Graft vs Host Disease because they are happening at the same time.
And so, having to be very specific about, okay, what is it that I put on my body? What is it that I put in my body? And how are these things going to impact me just as an aging human, as well as how are they going to impact me in terms of my health living with chronic Graft vs Host Disease and this more so, especially lately. I've had to think about how am I going to really balance my life and how am I going to make sure that I don't get burnt out, that I don't overdo anything. And then I'm, you know, on the couch for three days. That has been happening more. And so as I'm getting older, I kind of have to think about, okay, what needs to happen here for me so that I can do all of the things that I want to do and that I need to do? It's not just about taking care of myself, but also taking care of my home, my family, you know, my pets. And so it's very, very important to think about and not just associate it with like, oh, I'm getting old. Oh, I have this illness. Something that I actually found to be very, um, impacted me.
And I was like, this is a really fantastic way to think about things. It's a good way to refeframe thoughts. And the woman was talking about kind of shifting from what is wrong with me to, what do I care about? And so moving from this is wrong with me. I have to deal with this and I have to take care of my joints because you know, my avascular necrosis is happening because I'm taking prednisone for the GVHD that is affecting their, you know, but more so.
Okay. What do I care about? I care about being able to go on a walk with my family and what needs to happen so that I can do the thing that I care about. Spending time with my friends. I care about being able to work. How can I live my life in the best way, doing these things and what needs to happen so that I can make that happen.
Peg: That is just brilliant Meredith. When you think about it, it changes the whole negative spin on it.
Meredith: It does. It really, really does. And I think there's such value in that, because then it goes direction of meaning making and having really meaningful, significant experiences and living your life and the way that you want to and the way that you need to.
Peg: Authentic?
Meredith: Yeah, exactly. I love that. Me too. I got really excited about that. I've been telling all of my clients at my job I'm like, Hey, listen to this. I mean, it's just really about living and focusing on,what it is that you want to and need to do. Kind of does more of a positive kind of spin.
One of the things that I found with this is that for me, it was very, very helpful to have a specific routine and structure in how I spend my day, because that helped me like figure out and create the balance that I was looking for. And so I tested it out and I made some minor adjustments and I think that I've come to a place where I found the best routine that I can have for myself.
And also within that, I always think about routines as guidelines. Not necessarily set in stone. This doesn't have to be the way that it is. It's a guideline for the day. If it all works out fantastic. If it all doesn't okay. Do the things that you really want to and need to do.
Peg: Well, it depends on the spoons too.
Meredith: Exactly. And that's part of the whole picture, right? It's the whole picture of your day and everything that's going on. And just prioritizing. So one of the things that I encourage people to do is to make a list of, you know, what are the things that are most important in life to you? Like top five, whether that's family, friends, work, whatever it may happen to be, food, cooking, but the top five things and figure out how you can integrate that into your life on a regular basis and put that into your routine, alongside your spoons and alongside the things that you have to do to take care of yourself, to be able to do the things that are most important to you.
Peg: Absolutely Meredith. I know you're a big believer in flexibility, so you've got routine on one hand, but I guess being able to be flexible in what you want to do that day, and it might not all get done.
No, it might move to tomorrow, but that's okay too.
Meredith: Exactly. And that's the thing about finding balance,, I have a client in here every time we talk about it, he's like, it's the "B word" and make it about the "B word" I'm like, yeah. It balances such an important part, especially when you have a chronic illness. When you have chronic GVHD, you have to have a balanced life or else something just wipes you out and you're done for days.
And so, having that flexibility and being able to move this thing from today to tomorrow and the world is not ending, nothing terrible is happening. There's no disaster. It's just, you know, what's going to happen tomorrow instead of today? And that's okay, you're working with what you need to and what you have. And that's all that you can do.
Peg: And being able to say no, once in a while. Somebody recently told you every time you say yes to something, you're saying no to something else. So it's figuring out what do you really want to say yes to.
Meredith: Yes, exactly. And another variation of that, that I think is kind of an interesting one.
Interesting take on it is every time you say yes to someone else, you're saying no to yourself and taking away from what you need, you know, especially if it's like an obligatory kind of thing. And also it's okay to say no, It's not a bad word. A lot of times people think no is a bad word and it's no., I mean, it's about boundaries and we do well with boundaries.
We really do the best with them. And so if you have to set a boundary and say, no, okay. Say no, you can always do it later. Take a rain check.
Peg: Exactly. Exactly. So Meredith I really think everything we're talking about here falls in the lines of advocating for yourself. Do you have any final words you might want to add about that?
Meredith: That's one of the biggest and most important things that you can do in terms of identifying, you know, is by saying I'm going to seek everything that I can and fight for what it is that I need. Because I'm worth it. Because I deserve the best. I'm such a believer in self-advocacy and I think you can do that and it doesn't have to be something that's negative or something that is perceived as aggressive, or as you're turning your back on your doctor and you're finding someone new and it's a dramatic thing.
It doesn't have to be any of that at all. One of the things that I really value in terms of what Be The Match has done. Is that they've created essentially a survivorship plan. And there are a lot of institutions that have implemented survivorship days, survivorship plans, and it essentially follows this guideline that they've created.
And it talks about what kinds of tests needs to happen at what point after your transplant. And so, for instance, how often do you need to have an eye exam after your transplant? And then how often do you need to have it when you're living with chronic Graft vs Host Disease? Does it happen twice a year instead of annually?
How often do you see a dentist and you know, the CGVHD specialist? Yes. As often as you can, that's who you see. The other thing that it does is talk about moving out, annually, what to look for. So going to a preventative cardiologist, having regular pulmonary tests done, going to see occupational therapy, physical therapy, and just different things that are main areas of focus to live the best life that you can, because it does cover everything.
Peg: Sounds like a great resource. Thank you.
Meredith: It really is. I think it's a really excellent tool. And so, the thing that I think about is that patients and , their caregivers can take that and go to their doctors and say, okay, where am I at in this? And I think this is an area of concern that I'm having right now.
Can you refer me to someone? Can we get something set up? The other thing along with that is it also talks about when to get your vaccinations because you get the bone marrow transplant, all of that's wiped out, everything that you got from when you were young. And so it lays out, okay, this is when you get the measles.
This is when you get whatever. And so I think having those, if you're a person who is interested and would like to, and wants to and believes in getting vaccinations. That talks about when to do all of that stuff. And so it's a really comprehensive. Okay.
Peg: Great. Thank you. And we'll absolutely post that.
Meredith: Some additional ways to really advocate for yourself and to get the best care that you're able to get for is trust in the fact that you are the expert of your own body, you are the expert of your own experience.
Trust your body, listen to it. And don't let someone else say no, that's not what you're feeling. That's you know, probably just in your head or it could be something totally unrelated. And I don't think it's a big deal. And if you get that pushback, you push back and focus on what it is that you know, because you better than anyone.
And if that doesn't work out, ask questions and just seek the information, ask the questions, even if they seem like the hard questions, or even if they feel silly, ask the questions anyway. It's about recognizing the worth that you have and that you are worth, the absolute best care that you can get.
It's where you come in to do that work, to get the best care that you can get. And I think that's truly the best advocacy, self-advocacy, that you can do. And lastly, really fast, I will say it does make a huge difference to keep a record, to keep track of these things, keep track of symptoms. And when you're feeling, what symptom, you know, is it after a certain kind of meal or is it after a specific kind of day?
So that you can show someone and say, okay, this is what's going on for me. This is what it's looked like for the past month and a half. And also here's an article that I was reading about this specific thing. And also, what do you think about maybe it's time for me to get my heart checked out, you know?
And so then you can really come with a wealth of information and no one can really say no to you at that point. And that's really truly what it's about.
Peg: Terrific. Well, Meredith, thank you so much for your time today.
Meredith: Thank you for having me and I really appreciate the opportunity and I really value this. I just, I love talking to you and I always think it's such a, I just enjoy it so much. I could talk for at least another hour.
Peg: And so could I. We just need to get together more Meredith.
Well, thank you so much and have a wonderful day.
Meredith: Thank you, you too. Thank you. And thanks to NBMT link. I really appreciate this opportunity. Thank you so so much.
Peg: We're thankful also.