Ep. 285: Keep Calm and Summer on with Mast Cell Disease

Summer can bring unique challenges for people living with Mast Cell Disease. From heat and travel to outdoor activities, how can you enjoy the season while managing symptoms? Join us as we sit down with content creator and patient advocate, Jenna Gestetner, to share practical tips for navigating summer with confidence. 

Resources to keep you in the know:

• Mast Cell Disease Society
• FAACT's Allergy Summit
• JennaXHealth
• Instagram: JennaXHealth
• TikTok: JennaXHealth
• YouTube: JennXHealth
• LinkedIn: Jenna Gestetner

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Thanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

Transcript

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Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions,

each episode will explore a specific topic, leaving you with the FAACTS to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice.

Please consult with your personal board-certified allergist or healthcare providers for advice specific to your situation.

Caroline: Hi everyone, I'm Caroline Moassessi and I am your host for the FAACT Roundtable Podcast. I am a food-allergy parent and advocate, and the founder of the Grateful Foodie Blog. And I am FAACTS Vice President of Community Relations.

Before we start today, I would like to say thank you to Blueprint Medicines for their kind sponsorship of FAACT's Roundtable podcast.

Living with mast cell disease can feel like navigating constant twists and turns, often requiring a whole new way of thinking about everyday life.

And when the seasons change,

especially heading into summer,

those challenges can shift in unexpected ways.

So how do you safely enjoy sunshine, travel and all the fun that comes with the season?

Today we're sitting down with content creator and patient advocate Jenna Gestetner to talk about the impact of summer on mast cell activation syndrome and how to approach the season with confidence, awareness and a little more freedom.

Caroline: Welcome back, Jenna, to FAACT's Roundtable Podcast. As usual, I am absolutely thrilled to sit down and chat with you because I just find you, and I think our listeners do too, to be very inspiring and you share just real world, practical,

authentic wisdom and advice and thoughts.

Caroline: Thank you.

Jenna: Well, I'm beyond excited to be back here and talking to you, so very excited for this conversation. We'll see.

Caroline: It's going to be a good one then. So here we go for listeners who might be tuning in for the first time, can you help them to get to know you and can you share your background and then a little bit about your journey with mast cell activation syndrome and actually just mast cell disease in general?

Jenna: I am Jenna Gestetner. You may know me on social media as JennaxHealth.

I create content about health, healing, my journey with several chronic conditions, with one of which being MCAS Mast Cell Activation Syndrome. And it's the one that really does affect me most and I believe that I have had signs and symptoms of it since the day I was born.

And growing up I had all these seemingly random health issues that affected me in so many different ways, but a lot of them were invisible or just minor things that nobody ever really thought of.

And it wasn't until I got older that they got A lot worse. And I eventually that led me to getting the diagnosis of MCAS.

At the time it was a lot less known as it is now, although it is still, you know, fairly. People call it rare, but I think it's not that it's so rare, more just like it's really hard to diagnose and a lot of people don't know about it.

And I had felt very alone in the experiences I was having and that was one of the many reasons that I started posting on social media. And that was about two and a half years ago.

And ever since then I've built an amazing community online of people who can relate, whether they have a mast cell condition or. Or they have another challenge, maybe it's with their health or even in their life where they can relate to some of those feelings of feeling very confused by what's happening in your body,

feeling like nobody really understands or has answers for you, and feeling very lost in your life and figuring out how to live your best life given what's going on in the moment.

Caroline: And I think it's so hard, especially as an older person looking at a younger person,

to see you dealing with so much. But then in the same breath I'm watching you deal with something so intense and difficult for others to see, difficult to diagnose,

but yet I'm watching you just thrive.

Amazingly so. Now just going a little more deeper for our listeners. Can you explain how you manage MCAS, like day to day? So what does a day look like in your life?

Caroline: Like even today?

Caroline: What's today looking like?

Jenna: Yeah, there are two aspects to it and I think actually separating this has been one of the most life changing things I've done.

First is like the medical aspect and then there's the health life. Honestly, I think health is life, like life is health and health is life. So the medical aspect, I knew I needed to get an answer and for me a diagnosis and having that label was really important.

And since I've gotten that, it's helped me really understand what's going on in my body. So on a day to day basis when I do have those symptoms or I do have a flare up or something weird just triggers a symptom, you know, instead of like, I would usually in the past be like,

well that's not normal. This doesn't happen to most people. And that would create this very uncomfortable feeling like I'm confused and alone even more and nobody understands. You know, I do still feel that to some extent, but I.

The power of having the diagnosis and the understanding about mcas and the mast cells and how they can truly be triggered by anything and react to anything and cause such a wide range of symptoms.

Just being able to attribute that in my mind gives me such peace.

And I have tried several medications and now I have some that I take every day. I have some that I can take if I do have a flare up. So I have various tools in my toolkit.

I'm still trying different medications,

but that is a very. It can be a very long and slow process. There's never. It's not a one size fits all path.

So it's a constant journey of figuring out what medications are good options for me, talking to my doctors about it, which ones do I feel comfortable trying and then actually trying them in my everyday life.

And because that can be so slow, it used to feel like I did not have any control over it. And I just wanted to get to the next step. I just wanted to try the thing.

I just want to try the next one and next one, next one to find something that works. And so then the second part that we come to that I was saying how I separated the two is just living my life and my health.

Just because I have all these problems with my health, just because I can only eat eight foods and I react to so many different things,

doesn't mean that I am still not healthy. I'm healthy because I fuel my body with the foods that I have. I'm healthy because I stay hydrated. I'm healthy because I sleep well.

I'm healthy because I get movement. Whether or not in that particular time, I'm able to go to the gym and lift weights or simply able just to go outside and go for a walk.

And not only does that keep me healthy and feeling good, but it also gives me that mental sense of control and sense of.

What's the word? Drive to thrive. Like, I feel like I have the ability and the power over whether or not I thrive.

Caroline: I love that. That is so powerful. You're right, you do have control. And we forget that right when we get overwhelmed and we forget that there are things that we can control.

And I love that you're controlling the. The things that you really can. And beyond controlling it, like you said, you're thriving. You're out there doing things. You're living a very big life.

Jenna: Yeah. Ultimately life is about perception, and we control our perception. And I'm going to be the first person to say it's not easy.

And especially I also struggle with anxiety and ocd. So sometimes it feels like it's completely out of my control, that my brain is just taking me in the opposite direction.

And there are tools that I use to help with that as well. And there's no, you know, shame in getting treatment for those kinds of things.

And at the same time, we do also have control over, you know, our thoughts. And we can create positive thoughts and choose how we create our perception, because our perception is our reality.

Caroline: I love that you were so wise at such a young age. I just absolutely adore you. So fun talking to you. So now you mentioned a flare up. Can you talk about what does a flare up look like?

What does it feel like? Like, can you feel it coming or does it just slam right into you?

Jenna: Yeah. So I describe it.

So I separate reaction and flare up. A reaction to me is a specific thing. So there's a specific trigger. Maybe it's a food I ate. Or like sometimes when I go on a plane, one of the more niche strange things I react to is pressure changes.

So going on a plane, that would be a reaction. So I'm specifically reacting to something that is causing acute symptoms in the moment.

And a flare up is more prolonged. So oftentimes a flare up is triggered by a reaction.

But a flare up for me usually lasts more than a day,

more than a few hours. Sometimes it can last weeks or even months. And then at that point, it sort of just changes the baseline of the condition. It's not really a flare up anymore.

It's like a permanent change, if you will. Although nothing's permanent. But the for me reaction symptoms are what you would typically label as an allergy. So sort of like shortness of breath,

hives,

itching, flushing,

sometimes that. That feeling like it's a little bit difficult to breathe.

But when it comes to a flare up for me, more of the symptoms are like inflammatory things like fatigue,

nausea, headaches,

dysautonomia symptoms. So like dizziness,

lightheadedness,

that kind of thing, and those more baseline generalized symptoms that affect my body and how I function as a whole, rather than a specific symptom, if that makes sense.

Caroline: Okay, that's very complicated. Especially when you're saying last week,

oh, my goodness,

that's a lot. That is a lot.

Well, thank you for giving us this good basis. And now we got a good feel for this. And now taking all this information and looking ahead at summer and how does your approach change now that we're looking at summertime?

Cause now we're looking at heat and there's air conditioning and people are wearing sunscreens. I mean, some sunscreens just trigger my typical environmental allergies with these strong scents and all these summertime products.

So how do you even approach summer or seasons?

Jenna: Yeah, I mean, I do live in Los Angeles, so we don't really have seasons so much. But that honestly is one of the reasons I love living here.

Because, yeah, for me, especially having pots and dysautonomia, the heat can really trigger some of my symptoms. And I think it's all just a learning process. It's about learning what works for you and what doesn't and figuring out what that means for what I can do, whether it's going on a trip or going to the beach or going to,

like, a pool party or whatever it is,

and figuring out what I can and can't do. And sometimes for me, one of the biggest things, like I mentioned, my diet is very limited. So for me, I.

Being out of the house when it's a meal time is one of the most complicated and challenging things. And it's very hard to bring food, package it and bring it.

So I, you know, I try and work out my social schedule and. And the activities I'm doing around that as best as I can and utilizing all the resources and support that I have to make it work.

Caroline: So now, do you have any specific tips for managing this? Like, if you're bringing your food with you, do you have certain types of pain bags or packs of ice or what kind of tips can you give people?

Jenna: Yeah, I know we had talked about this as well in another episode we did together about traveling. But I always have hot,

insulated metal containers. So that is for hot food. My biggest tip is if you pour boiling water in it first, it preheats it so it doesn't take any of the heat away from the food when you put it in.

That helps keep it last for longer.

And then for cold food, I have an insulated lunchbox as well as gel ice packs that I keep in the freezer at all times. So I put food in. Metal is the best kind of container because again, it stores the.

It keeps it more temperate, so it stores the cool air inside. And I'll y' all make food, put it in there, bring it out, and it just helps me. 1.

So oftentimes I can't get food out of the house because of how limited my diet is.

Caroline: But.

Jenna: But even for people who just have a few allergies, sometimes, you know, you don't want to have to think about and worry about,

you know, getting Food and getting safe food, and you just want to be able to enjoy. So bringing your own food can sort of help allow you to focus more on just having fun.

Caroline: Well, and that's what it's about is being prepared and strategizing. I know when we have our conversations, you're always talking about strategizing, and I just think that's so amazing because we forget about that.

We. We're so busy, and we're running from thing to thing to thing, and we're just zooming out the door. But I think that's always good advice from you when you talk about strategizing.

And can you just talk about that for a quick minute, how you strategize? Like, so let's say someone says, hey,

Caroline: we're going to the beach next week.

Caroline: Now, what happens in the life of Jenna?

Jenna: Yeah. I am somebody who. My default brain state, again,

like I said,

very anxious person, have always been like that. My default brain state is overanalyze,

over, prepare, stress about everything.

You know, worry about everything.

Like, everything's automatically a problem that I have to solve.

And it's.

I've come to realize that the same situation,

like, the facts are the facts regardless of whether or not I'm stressed and anxious about it or not. And I would rather not be stressed and anxious about something because that is only going to take away from my experience.

And so I used to do that. I would just stress about everything.

You know, I'd. I'd be like, okay, well, I'm gonna bring this food. I'm gonna do that. And then I'd leave the house, and I'd still be stressed about it. And.

And now I've been trying. Keyword trying, because it's not always effective.

Trying to just adopt more of a nonchalant, if you will, mindset,

and just being like, you know what? Like, as soon as I feel myself getting stressed about coming up with, how do I figure this out and how do I do this?

Like, no, I don't need to feel that way. It is a choice that I feel stressed,

and I don't need to feel anxious about these things,

but I do need to be prepared, and I do need to be cautious.

And so I put away the feeling of anxiety or I try,

and I think, okay, how do I best prepare for this?

What are the things I can do in advance?

What are the logistics of the day of.

And then what do I need to do to be cautious? Because preparation is like, the things that you can do in advance. Right. Like, I can bring food I can make sure we're going somewhere.

I don't know, that has some shade.

But then when it comes to the caution aspect, it's like, sometimes I get afraid of going somewhere or leaving the house because there are all these different things in a new environment that could trigger symptoms.

So I just sort of think a little bit. I don't do the too much of this, but I'm like, what are the potential things that could.

Could trigger symptoms? Okay, heat,

potentially. Like if we're going to the beach, the ocean and the salt water.

So I just take note of those things, and I don't go through the whole like, well, then if I do this, I'm gonna have to do this, and if I do that, I'm gonna.

Because that's just not. I know that's just not helpful for me in my brain. So I just think, okay, then you know what? I'm gonna be prepared.

And I'm also going to completely trust that whatever happens, like, I'm going to be okay and that I have the tools and support I need in the moment and that allows the perfect balance of.

I'm acknowledging that this experience could potentially be risky for me and be scary. And there is a lot more that I have to do and think about than other people.

But also, I just want to let myself enjoy and not predict what's going to happen, because you never actually know.

Caroline: Actually, with you. Just saying that reminds me of something that Dr. Justin Greiwe said on a podcast not long ago.

He said, you don't have to be perfect, just be prepared.

And that just is what I'm hearing from you, too. It's like, you can't be perfect at it. Don't overthink it, don't overdo it, and just know you're going to show up.

Knowing how to make good decisions, knowing how to think things through and with the items that you do need.

Jenna: Exactly.

Caroline: I think that's very powerful.

So now, I was looking at your social media the other day, because, yes, listeners, I follow Jenna, and I will make sure in the show notes that I put how you can follow her too.

But she had this one social media post that really struck me, and in that post, you mentioned you can only eat eight items, yet you were living your best life.

So talk to us about that post.

Jenna: Yeah,

so I posted that because,

honestly,

I get a lot of comments that are like, oh, you must hate your life.

This was me. I'd be so depressed, I wouldn't want to live and all of this. And I think at first, that statement of, like, well, I can only eat eight foods, but I'm like.

And my health is at the worst it's been in some ways, but I also feel like my life is the best.

It's. It can seem like, oh, I'm dismissing all of my challenges and that's not the case. And there. And this isn't to say that I don't have days where I do really struggle and that it is really hard.

And I do wish that things were different.

But like I said before,

ultimately our life is defined by our perception.

And within the eight foods that I have and within the way my life is,

I choose to take control of the things I can control.

I choose to see, like, the creativity and abundance in everything.

And,

like, this is not a lie. I literally do enjoy my food every single meal. I look forward to it. I actually can't wait for my next meal. I'm so excited for lunch today so that I can eat my food again.

That is not a lie. And that, again, it's not to say there are. Sometimes I'm like, this is gross.

I wish I could eat more foods. All I want is something sweet. I just want dessert because I have a sweet tooth and there are no sweet foods I can eat.

Very sad. But the fact is the fact. And if there was something I could do about it, I would. And I'm. I'm doing everything I can. I'm prioritizing my health in all the different ways I can in my daily life.

I'm pursuing the different treatments and medications that will hopefully get me to that point.

But there's nothing more I can do than do that. And I'm just going to be happy with that because I just want to enjoy my life now. And I don't want to spend time waiting to be happy when my life looks different.

Because I think we.

I think, like, society makes us not want this to be the case. But you can be happy with where you're at now and want something different for the future.

Like, just because you're happy doesn't mean you're.

That you don't have any ambition or want anything else.

Caroline: Good point.

So, staying on the vibe of living your best life. I know you just started a Substack account and a subscription, I believe.

So. Can you talk about that?

Jenna: Yeah.

So what we just talked about was exactly the topic of my first Substack post.

And for me, the Substack is a way to share more insight into my life and insight into the experiences that we have when we have chronic conditions and when we have health issues like this.

And I think there's only a certain extent to what you can share in a short video online. I also have always felt like I am a writer.

Writing is a way for me to be creative and put my thoughts out there in a succinct, concise way.

And it's something I've wanted to do for a really long time, but I've hesitated a lot because I don't know, it is a very vulnerable way of sharing.

But I'm really hopeful that it can even just help one person and that they can find value from it.

And it's fun, it's enjoyable. I like writing.

Caroline: You and I both know that there's such power when you share yourself authentically because there's somebody else who feels the same or there's someone else that can relate. And even if it's a different health condition, they can totally relate.

And so there's just this beauty of healing together and then thriving together. So wish you luck on this and I can't wait to hear more about it and how it grows.

And also now just being really curious about summer. Do you have any summer plans set kind of thing?

Jenna: I'm like, I don't know if I do. I.

I don't have any specific summer plans. I have a small trip that I'm doing just within the US with some family,

hopefully going to see a couple of friends.

But otherwise, I mean, now that I'm not in school anymore, it's my first year not in school. Summer is not really summer. It's not like a big break or anything, so I'll just be working, doing my thing, but definitely enjoying the good weather.

Although it's been like almost 90 degrees in LA every day the past month, so it's honestly not that much. Hopefully not that much different. I mean, hopefully it's not like 20 degrees higher than that,

but just enjoying the sun,

enjoying maybe the beach. I'm not the biggest beach fan, but enjoying the beach, enjoying the activities. I've been playing tennis recently, so we're doing more tennis and just having fun.

I love warm weather. Summer's my favorite season.

Caroline: So you're definitely living in the right city.

You're right. And there aren't the full seasons. You're not going to get snow and all the different things. Although it has been very hot.

Yeah,

you have been hit with that.

Well, our time is up together. It went really fast.

So before we say goodbye today, is there anything else that you want listeners to hear from You.

Jenna: In the past couple of years, I've gone through this journey of going from,

you know, one side where I was completely against any kind of mindset, positivity kind of thing. I've always been a positive person, but I felt like all those people were just another way of saying that it was all in my head.

And that was a protective mechanism that I rightfully had for myself after having, you know, so many experiences that made me feel that I needed to be that way.

And what I've come to realize is that there's room for both my struggles and everything that I'm going through is not the only thing that can be true. It's so important actually to validate that.

I think toxic positivity is the idea that you don't validate any of that. And I think that is toxic. In my life. I just refuse the challenges and the struggles to be the only thing that is true.

Because I always have the choice to create positivity in my life. And that's not removing any of the struggle, but it's just adding something else. It's adding joy, it's adding.

Adding positivity. It's adding another layer to the perception that I have on my life. And if at a minimum, all that does is create some great chemistry in my brain and I feel good, you know what?

I'm down for that.

Caroline: That is perfect advice.

Caroline: Thank you so much.

Caroline: And Jenna, thank you again for your time. I know you're really busy, but we just enjoy having you here and speaking to you and I hope you have a lovely summer.

Jenna: Thank you. I hope you have a great summer too. And I always have time for you because these conversations are always amazing.

Caroline: Thank you.

Caroline: Before we say goodbye today, I just want to take a moment to thank Blueprint Medicines just one more time for their kind sponsorship of FAACT's Roundtable Podcast.

Caroline: Thank you for listening to FAACT's Roundtable podcast. Stay tuned for future episodes coming soon.

Please subscribe, leave a review and listen to our podcast on Pandora, Apple Podcasts, Spotify,

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Have a great day and always be

Caroline: kind to one another. Another.