Mel & Lindsay: Different Diagnoses. Shared Experiences.

0:10Speaker 1:Welcome back to another episode of Untold Stories Life with a severe autoimmune condition. I'm Martine Hackett. This season, we're opening the conversation a little wider by bringing together voices from across the rare disease communities, because while the diagnoses may be different, the experiences behind them are often very similar. Today's episode brings together two women whose stories reflect just how connected those journeys can be. Mel is a dancer living with CIDP, a rare autoimmune disease that affects the nerves.

0:41Speaker 1:Lindsay is a writer and podcaster living with dermatomyocytis, a subtype of myocytis, a rare autoimmune disease that causes inflammation and muscle weakness. In this conversation, you'll hear them recognize their story in each other's experience, reminding us that connection across communities can be incredible powerful. I'm so glad you're here to meet them. Let's get started. Good morning, Hi everybody, Thank you so much for being here today and joining us.

1:11Speaker 2:Thank you thanks for having us.

1:12Speaker 1:The first question I have is for Mel Mel. Many of our listeners are familiar with CIDP, but every journey is different. What were the first signs that something wasn't right for you.

1:23Speaker 3:I had next surgery back in December of twenty twenty two, and the issue was numbness and tingling and pain on my left shoulder in the hands. So when I woke up from that surgery and that pain was gone, I was like, oh wow, I can live a normal life now. But when those symptoms of the tinkling of the hands and feet came about, I was like, what's going on? What's this is not right? So during all of my follows with my surgeon, you know, from my next surgery, I brought those to his attention, So I was like, what's going on? This is not normal, especially after a surgery, right, Yeah, exactly right. So that was like, oh, you know this is probably because of your new neck. That was the start of that started that. Yeah, Lindsay, for listeners who might be hearing about myocytis for the first time, can you share what it is and when you were diagnosed?

2:12Speaker 4:Yeah, of course, myocytis is an umbrella term, right, there's a bunch of diagnoses that fit underneath it. I was diagnosed with dermata myocytis associated with antisynthetas syndrome in March of twenty twenty three, and my journey is a little bit different than everybody's. I think that's one of the things in the chronic illness rare disease space is it shows up different for everyone, and hindsight being the gift that it is. The symptoms were around a lot longer before I noticed them. So myocytis is inflammation of the muscles, and each of the different diseases have kind of different trademarks, and so for DM and antisynthetas syndrome, it's a combination of your autoimmune system attacking your muscles, your skin, your lungs. Again, it's a little different for every patient. And I had been on a high and I got some cactus spines in the back of my leg down in Sedona and didn't think really anything of it until the next day when I woke up unrecognizable, the swelling in my face, the swelling in my body. I had this massive, red, deep red rash on the back of my leg and diagnosed with cellulitis give an antibiotics. Was really confident it

3:22Speaker 4:was going to clear up. I went home and it just continued to get worse, and so again you know, I mentioned that that gift of hindsight. The symptoms had been around for a lot longer, the muscle inflammation specifically, But I was somebody who was working out three to four times a week, and I really thought that that's what it was. I had no idea there was something much more serious going on.

3:44Speaker 1:Yeah, and for melt before you had answers, what was that period of uncertainty like when you tried to figure out what was happening in your body.

3:52Speaker 3:I was in a really dark hole during that time, scared, angry. I hit a lot of my pain and anger from my students because I thought seven days a week in my studio.

4:03Speaker 2:That's a dance studio, right, yeah, my dance studio.

4:06Speaker 3:So the whole time, every time that I would go teach, and before I would leave from the studio and go home, I would just sit there for a good fifteen twenty minutes but just.

4:15Speaker 2:Cry, oh gosh, yeah, because I didn't know what was going on.

4:19Speaker 3:Yeah, so all the symptoms I would put in you know, doctor Google, and all these things would come up, and you know, I didn't know what was going on, but just try to process it.

4:27Speaker 1:Yeah, and see, did you go through a similar stretch of searching for answers, like mel, what did that time feel like for you?

4:36Speaker 4:It's crazy to think it only took two months, which for rare dise these patients is a miracle. But those two months were the longest and most lonely and overwhelming two months. And honestly, for me, it was a crash course in all the things I didn't know and understand about the healthcare system. I learned very quickly that I was going to have to be my own best advocate.

5:03Speaker 2:And I was truly so lucky.

5:05Speaker 4:I was being seen at a teaching hospital and I had a dermatology resident behind the scenes. I had rashes all over my body and these fissures, these really deep cuts on my fingers called mechanics hands, and I think he knew what it was from the first examination, but he behind the scenes really went to bat for me, and that moved things along a lot quicker. But I didn't know what was happening right like, I'm sitting at home feeling hopeless and feeling like I'm going to be this way forever and nothing is going to get better.

5:36Speaker 4:And now I can go back through my medical charts, through all of the documentation and be like, oh, there, there he was saving grace.

5:44Speaker 1:Listening to Melan Lindsay talk about the early days of their journeys really brings this season's message into focus that even when the diagnosis is different, the fear, the uncertainty, and the loneliness so many people feel along the way can be strikingly similar. So for both of you, you know, when you finally had a name for what was happening to you, was that a relief or did it open up a whole new set of questions.

6:11Speaker 3:Initially for me it was like, oh, I have a name, yay, But then it was like, well then what do I do with it?

6:17Speaker 2:Right?

6:17Speaker 3:I mean, it took six months from my diagnosis, which you said, too much for you, that is rare. For me, six months is also rare, but still I had to push for that six months. I've met folks who have been living with their illness and the symptoms for ten twelve years and didn't get that diagnosis. So again, six months from me, it was still fairly fast. But I received my diagnosis on a Friday, and then I was told you're going to go to the hospital and get your first set of your loading those of your infusion. Yay, I got there, But I wasn't really told what I was going to do after that, what it really meant to have this diagnosis. No one told me what CIDP really meant. So in my mind, I had my loading dose.

6:57Speaker 3:Yeah great, I was going to recover from that in a month or two, I'll be back in the studio.

7:01Speaker 1:Yeah, I'm ready to go. Let's go.

7:03Speaker 3:I'm ready to go. No, that was explained to me. Nobody told me that CIDP was going to be forever.

7:10Speaker 1:Yeah.

7:10Speaker 4:Going back to what Mel said about doctor Google, I remember exactly where I was when I googled my diagnosis. You know, you start whittling down that list, and they're like, it's not this, it's not this, And as you're eliminating things, they tend to get worse. Right at the bottom of the list is the stuff you don't want, right.

7:30Speaker 1:All the good ones are the ones that are.

7:32Speaker 4:Yeah, yeah, I'll take all of these right. And I googled it. I was shopping with a friend and I was in the dressing room. I was actually buying an outfit for a really, really important job opportunity. I was going to south By Southwest to host a panel, like my entire career is working towards this point, and I googled drum outamiocytis, and of course I know now that because it's so rare, that everything you're getting online is the worst of the worst, right, The research papers that are done are about the patients that are the worst of the worst. And it's very hard in that moment to separate your journey, especially because mine was really just beginning.

8:11Speaker 4:But I saw the life expectancy and I just lost it.

8:16Speaker 1:You know.

8:16Speaker 4:One of the things that's very serious with grmtamiocytis and anti Synthetae syndrome is intertitial lung disease. And luckily for me, mine was caught very early and I was able to get on medication that stopped the progression. But the unfortunate reality is that's not the case for everyone, and there's so many patients who are misdiagnosed with pneumonia, and so it can just drag on, right, and that long term damage to your lungs, And so I was just sitting there going, oh, this is going to be me, right, And it is a feeling that I can't describe until you have had your health taken away from you. You know, I think we all take our bodies for granted. We don't realize that this is the only one we get.

8:58Speaker 4:And to see really how serious this disease could be was very, very sobering.

9:05Speaker 1:Yeah. I mean because both of you were you know, young, you're healthy, you're active. I mean, all indications were that, you know, you were doing all the right things exactly.

9:16Speaker 3:I'm also a fitness trainer and lover and all that, and I always tell people this is the only body that you have is your temple. Take care of it, and if you're not, you can't take care of other people. All those things I'm always pitching to others, and then you get specked with this.

9:30Speaker 4:Yeah, I really lived the healthy one day, sick the next. Obviously I can look back and my symptoms were they're progressing. But I went on that hike and everything was fine, and the next morning it wasn't. And obviously it's a much more complicated journey than that. And you know, Mel touched on it, like, no one tells you that there isn't this course of like these are all the weird things you're going to deal with.

9:51Speaker 1:Mel, I see you nodding. Oh, yeah, this is a question actually for you both, And maybe Mel, what you're going to say sort of fits into this. Was there a specific moment, one that you still remember clearly where you realize this disease was going to change your path forward?

10:05Speaker 3:Probably month three or four, when I was on my second treatment because I have a variant of CIDP that supposedly the infusion that was given initially is not supposed to work for so they put me on chemo and so on paper, chemo was supposed to work on my variant, but it didn't. So I'm on the second dose of the chemo and so like doc is not working. He's like supposed to work. It's not paper or supposed to work.

10:40Speaker 4:I had no idea chemo was used for anything other than cancer until I was being prescribed it. And that is a wake up call. And I feel like, Mel, you might have been in the same boat. Yeah, this is serious.

10:53Speaker 1:Had no idea, lindsay, any moment come to mind for you.

10:56Speaker 4:For me, it was just an average weekday night shortly after I was diagnosed, and I was waiting for treatment, and I was in so much pain and I was so exhausted, and I remember just getting up to get something and it was so challenging to do that. And I thought to myself, it doesn't matter if I completely recover from this, If my body goes back to the way it was before I got sick, I will never know what this period of time is like, Like my brain is forever changed.

11:32Speaker 2:What I always say is I hope.

11:33Speaker 4:People get this dose of perspective as young as possible and in a much less dramatic fashion.

11:40Speaker 2:I'll never go back to knowing life without this.

11:46Speaker 1:What's so powerful about what we're hearing from Mel and lindsay right now is just how life changing a diagnosis like this can be. It doesn't just change your body, it can change your entire outlook on life. So again, different diagnoses, but very similar shifts in perspective. Mel, were there moments when your symptoms started to interfere with everyday routines, whether that meant moving around your house, driving, or managing your work at the studio.

12:13Speaker 3:Oh gosh, when I couldn't go up the stairs anymore, when I had to crawl up the stairs, couldn't do my things in the studio, couldn't do my turns, couldn't do my relevase. My body is my tool. I dance with my dancers, and when I'm just not the teacher, I dance with them. I performed with them. So when I couldn't do that anymore, it was like you just knew. So when I was going through all my testing and prodding and all that, and they were telling me it would take seventy two hours to get a result or a test result, I'm just like, no, we're not doing seventy two hours. I will call the next day.

12:48Speaker 1:Lindsay, you've shared that there was a time when even basic tasks like getting dressed or brushing your teeth became difficult. Like what Mel's saying, These things that you just used to do all the time, you could not take those for grand What stands out the most from that period.

13:03Speaker 4:We have a two level home and the laundry is downstairs, and I could get down there and do laundry, but I couldn't carry the basket up the stairs. I'd get to the top of the stairs and I'd be drenched in sweat and breathing heavily. Unloading the dishwasher in the morning was like a full workout. I couldn't get most of the items up into their spot, so I would just leave them on the counter and wait for my partner John to take care of it. But he was working at the time and outside of the house, and he had created a list of people and there was a daily schedule, and every weekend he would set the schedule for the week of people to come over and take care of me. And I've always been somebody who has struggled to accept help.

13:46Speaker 2:I am much better at being the one giving it.

13:49Speaker 4:But I very, very quickly had to accept that if I was going to get through this as unscathed as possible, that I was not going to be able to do it by myself. And so to have people show up for you that way, it is a cup filler, for sure, but it's in a way that you don't want it to be right, and to just be so sick that everyday tasks brushing my teeth. I could barely hold the toothbrush up to my mouth to brush my teeth. I couldn't get myself dressed. I couldn't lift up my feet to put them into pants. I couldn't get myself in and out of bed. There was one night John put me to bed and I was lying there, and I was thinking, like if the house started on fire, I wouldn't be able to get myself up and out, like I had no mobility once I was lying down.

14:33Speaker 1:Well, I see you nodding. And fatigue is something that we often hear about in the CIDP community.

14:39Speaker 3:Fatigue feels like running a marathon playing football every day. So my family and friends called me the energizer bunny, huh, because I run my business about myself and I was at the studio. I was military, the go school full time and then still do the studio from the time I got to this studio four o'clock and then be there all night till nine o'clock. And I did that seven days a week.

15:06Speaker 1:Wow, And you had like ten jobs.

15:07Speaker 3:Yeah, and I didn't even think about it twice. And then to just be knocked down on your bottom and then just not be able to get up and not be able to do anything. And Lindsay is saying, ask for help. I was never that person to ask for help constantly being independent and then to ask for help and then to say I had no energy to do anything, and then to just say you have to you can't do anything. So you have no energy. You don't want to acknowledge it, but you have no choice but to acknowledge it because your body just can't do it.

15:36Speaker 1:It's like change an identity.

15:38Speaker 3:It is, and then your whole identity changes, and you just had to figure out how to rebuild yourself from that.

15:45Speaker 1:And Lindsay, you said you experienced that same kind of exhaustion on your journey with myocytis, and so how did it affect your independence and your ability to even stay active.

15:56Speaker 4:Well, I guess one of the good things the glimmers that came out of it is that I had to learn how to set boundaries very quickly. I was working through my sickest moments and I didn't know when to stop. And I think when you start to realize that if you exert yourself, you know one hundred and ten percent one day, you're going to pay for it for the next four And that was something that I had never dealt with before, and learning, even with physical therapy and workouts, I have to constantly remind myself that I'm not who I was before and that if I try to be that person, I'm going to pay for it. And I think a huge part of my healing process was learning to look at my new accomplishments as wins. In my book, Yeah, so I was a marathon runner before I got sick.

16:48Speaker 2:I'd like to think that someday that could happen again.

16:51Speaker 4:I have no idea if that will, it can and I fingers crossed right. I think it's just so important to set celebrate who you are and what you've accomplished. And I think an added pressure of that is that, for the majority of my journey of being sick, I haven't looked sick, and there is this part of you that really struggles with how other people see you and kind of what they're able to understand.

17:17Speaker 1:So, following up on that, mel, were there moments when the people around you didn't fully understand how serious your symptoms were or even believe that they were real? Yeah?

17:27Speaker 3:Like I said, I hid it from a lot of people, like mainly my students, and even at some point my husband didn't think, oh, what was sick. My symptoms began in January and it wasn't until May. We were there anniversary trip and he saw me struggling upstairs the Airbnb and he was like, oh, so, when they're you going to get to see another doctor about your symptoms. That's when he saw me struggling from January to May May. He asked me when was I going to get diagnosis?

17:53Speaker 3:But it wasn't until around June that most people started really asking questions.

18:01Speaker 1:We'll be back with more untold stories after a quick break. Are you living with chronic inflammatory demielinating polyneuropathy? Get information about a clinical trial opportunity at cidpclinicaltrial dot com, and now back to untold stories. Lindsay, you mentioned it can be frustrating when people say, oh, but you look great. What did it feel like I'm inside while you were struggling.

18:39Speaker 4:It is so infuriating, and I know it's meant to be a compliment. What I think they're trying to say is you're carrying this really well, and it does the opposite. It negates your entire experience. And Mel kept her journey quiet, right, I did not. I am a chronic oversharer. That was a huge part of of my coping mechanism before I was diagnosed, and when I didn't know what was going on, I was constantly sharing on social media, hoping that somebody would see me like I'd be that story where somebody would go, oh, it's this, you need to go go ask for this. But I think one of the things that really stands out from that timeframe is just how invisible it can be and how much you can carry around and not highlight for the public. Right on the inside, my muscles are legitimately deteriorating.

19:33Speaker 1:If I could turn myself inside out, you would see, Yeah, but it's real, and it makes you again like another piece of ve identity that you're realizing, like, oh, this is my life now. Yeah, definitely, Well how did those reactions from others affect you emotionally during your hardest days?

19:52Speaker 3:So once that was in a cure rehab, that's when I had to decide what I was going to do with my studio, because I end up having to close my STUDI of ten years. And I was actually kind of surprised at that point that once I did that and made the announcement that I'm actually sick. This is supposed been happening. I don't know when I'm moving back to teaching. I actually lost a lot of people, a lot of my connections at that point, and that's when I realized, oh, I thought I was close to these people and I'm.

20:19Speaker 1:Not that's all it takes.

20:21Speaker 2:Right, Oh, thanks a.

20:21Speaker 3:Lot, Yeah, not exactly right. I thought this was my family, that's my family. But that's when I added darkness, pain, all that that came flooding back.

20:32Speaker 1:Here.

20:33Speaker 3:I am having to go through a cute rehab for four weeks, struggling to get back to learning how to walk and learning how to do all those things again, and then I've lost all these friends to heartbreaking lincy.

20:44Speaker 1:When you felt misunderstood or dismissed, what helped keep you going?

20:50Speaker 4:I really liked my life when I got sick. I had a job that I loved. I was hosting and producing a podcast about ADHD for a telemedicine mental health care company, and I was recording episodes in the hospital. And then about a year and a half into my journey, we lost funding and I was devastated. I felt like I had the rug pulled out from under me. I felt, you know, as Mel talked about, I had all of these people that I thought were my people, and here they were doing this horrific thing, pulling my livelihood away from me. And it took me a really, really long time to manage those feelings. And I look back at that now as the best thing that could have happened, because I would not have slowed down and to acknowledge that the pace I was going at was not maintainable.

21:39Speaker 1:Because you might not have stopped otherwise. Oh, I wouldn't have This is not like a mite like this is like it's.

21:45Speaker 2:A for sure.

21:46Speaker 1:And mel, I see you nodding your head. At what point did you realize that you needed to start speaking up for yourself and advocating for your care.

21:54Speaker 3:I've always been, I guess that type a person. I guess I'm always go, go, go, And I think from the time that I first asked my surgeon about why am I tingling up my feet my hands, and he said, yeah, that's probably I mean your new neck. But hey, let's go get an MRI of your low back and let's see maybe something's going on. Let's suspenc in your feet tangle. So got an MRI, then come back and see me when your results are back.

22:19Speaker 2:This was March.

22:20Speaker 3:I couldn't go back to see him till June for that follow up for their MRI results. I'm like, I am not waiting till June to come back and see you just for an MRI result. So I went and saw my PCM, my main doctor. So that started the role of figuring out something else is going on. You need to go see somebody else, And that's what got the ball rolling to get all the testing done for everything.

22:42Speaker 1:But you didn't wait, is what you're saying. No, I didn't wait, lindsay. You also took a very active role in pursuing treatment, and you even participate in a clinical trial. What inspired you to take that step to push forward?

22:56Speaker 4:I think I realized very early on that I didn't have a lot of options, right, So for my disease, there's one FDA approved treatment and everything else is kind of throwing stuff at the wall and seeing what sticks. And going back to the fact that I really liked my life. I was willing to do anything.

23:13Speaker 1:And so it sounds like that idea of this new identity, this new force because of the situation, a new community that had to sort of, you know, emerge to support you. So for both of you, what does it mean to be in a room or on a caller or a podcast with someone else who just gets it without having to explain yourself.

23:32Speaker 3:Well, for me, it's like you don't exactly, you don't have to explain yourself. We understand that, you know it's we just get it. We understand how each other feels. You know, my symptoms are different from yours, but we know what it is. We get each other.

23:47Speaker 4:Yeah, I think you know how to show up for those people. I always say it's the crummiest club with the best members, because once you've been through it, you just you get it. You understand it well. I see you nodding. Is anything you'd like to add.

24:01Speaker 2:To this exactly?

24:02Speaker 3:Which is we get it. We know what we have to go through every day, day and day out.

24:06Speaker 1:So this is my last question for you both. Has there been a moment today in hearing each other's story that connected with you, something that felt kind of like an echo or hearing your own experience back?

24:19Speaker 3:I love it. Len say that you're a sports fanatic as well, that you're into wellness. Don't say that you aren't going to get back there. You will. I have faith in you you will because I did as well. So I can't wait to hear you get back there.

24:32Speaker 4:Oh, thank you. That's so kind of you. It's just it's so wonderful getting to connect with another person who understands it. And I think what's so important is being able to acknowledge that Mel's journey is different than mine, and I think hearing some of the things that she has gone through struggling with her providers, it just strengthens my desire to continue doing the advocacy work that I've been doing, because it shouldn't be that difficult for people.

24:58Speaker 4:It also makes me incredibly grateful for the team that I've had, and I've also had to work for that, and I think I haven't sat down and thought back on things. I think one of the things with chronic illness is you are always marching forward. There is never even a time to sit and pause and think back on what you've overcome. And I hope now that you've kind of gotten some of that cup fill today too, of just what your journey has been like, because we really don't ever get to sit back and go, oh, my goodness, I can't believe this is what I've been through.

25:28Speaker 2:Oh yeah, oh yeah, totally agree.

25:30Speaker 1:Yeah, But meanwhile, you did, and both of you have done that.

25:33Speaker 3:And I do, and now that I'm mentoring and I'm doing advocacy, and it's like, I am lucky to where I am to be where I am to have the care that I have. So I make a plane that you know just takes this long. But there are others that don't have nearly what we have or don't have it at all. So this is why why I have what I have now. And I was still that with the people that I'm mentoring with, I'm like, why did I get this? Why was I given this? Why?

25:59Speaker 2:But this is the why.

26:00Speaker 1:It makes sense to you.

26:01Speaker 3:No, it does, It makes perfect sense to me. Now, this is the why I get to meet people like you. I'll work with people like you.

26:08Speaker 1:Yeah, and all of us can just hear and share, and we know that somebody will be hearing this and also benefiting from hearing your stories. And so Mel and lindsay, thank you so much for your time today and just being so open and honest, because I have to tell you, just hearing what you have gone through, I totally connect to that idea of that identity of like just keep going and that it's worth hearing. That perspective that you had really has changed in a way that you never had expected, but in a way that it sounds like you're sort of seeing the why. So thank you so much.

26:49Speaker 1:What we heard today is a powerful reminder that progress doesn't always happen all at once. It often comes through small steps, shared stories, and the courage to keep going. And when people come together to share their experiences, it helps all of us feel a little more hopeful about what comes next. Until next time, take care of yourselves. Untold Stories Life with a Severe Autoimmune Condition is produced by Ruby's Studio from iHeartMedia in partnership with Argenix, and hosted by me Martine Hackett. Our executive producer is Yvonne Shehan.

27:24Speaker 1:Our producer is Leah Sutherland. This episode was written and produced by Diana Davis. Post production for this season is by Tom Sullivan and Paul Videleans of Audiography