Navigating Life with Lupus: Elizabeth's Story

What if you were diagnosed with a chronic illness at the age of five? In this heartfelt episode, we sit down with Elizabeth, who opens up about her lifelong battle with lupus. From the early signs of hair loss and severe fatigue to the relentless support of her mother and medical team, Elizabeth’s story is one of resilience and hope. She takes us through the evolution of her treatment—from the initial, intensive regimens to a more stable and manageable routine that now involves just three low-dose medications. Elizabeth shares the struggles of growing up under the shadow of lupus and the impact of medications like prednisone. Her journey is a testament to the power of family support and medical advancements.

We also discuss practical tools and resources for those battling chronic conditions. Learn about a unique starter kit designed to naturally boost energy levels and the supportive online communities that can make a world of difference. Elizabeth emphasizes the importance of a robust support system, sharing insights on how to build and maintain one. Finally, don't miss the chance to connect with Elizabeth on social media, especially Instagram, where she offers daily inspiration and advice. Check the show notes for all the links you need to join her vibrant community.

• Website: https://www.revelinghealth.com/
  • Energy Reset Starter Kit is on the website
• Website for 5 Day Pain Free Challenge: https://www.painfreechallenge.ca/
  • Next one runs from July 22-26, 2024.
• Links to all socials:
  • Instagram: https://www.instagram.com/revelinghealth/
  • Facebook: https://www.facebook.com/
  • LinkedIn: https://www.linkedin.com/company/98442935/
  • Pinterest: https://pin.it/5ASvRFGmY

Chapters

• 0:00 Lupus Diagnosis Journey and Management
• 14:25 Support and Transformation in Health
• 21:54 Connecting With Elizabeth

Transcript

Jen: 0:08

My Spoonie Sisters. It's your Gr,, , and, as usual, I am so excited I have an incredible guest with us today. Hi Elizabeth, how are you today?

Elizabeth: 0:20

Hello, I'm doing great, so excited to be here today.

Jen: 0:25

I'm so happy to have you here. You know you reached out to me through email and I looked over your website and, oh my gosh, you're incredible. I'm so happy to have you here. Do you mind giving us a little bit of introduction to you and your diagnosis story?

Elizabeth: 0:40

Yeah, well, where to start? It's quite the story. I was diagnosed at five years old with lupus. It was a thankfully semi-quick diagnosis. It started with me, you know, kind of losing my hair, having rashes all over my face, and my mom.

Elizabeth: 0:59

The first thing she noticed actually was that I was feeling super exhausted and just was not acting like my usual excited five-year-old self. So she took me to the hospital to get some blood work done and yeah, the blood work was a mess and the doctors were like, yeah, I don't think you're leaving today, we're gonna, we're gonna hospitalize you, but they were still not sure what it was. So five weeks after we finally got a diagnosis of lupus, after hearing horrific other kinds of diagnosis I mean lupus is not so great either, but better than the other options they were telling my parents at the time, you know, once he diagnosed me with the lupus they were, you know. They put me on the medication I immediately started getting better than steroids and the typical treatments. And yeah, and then it's just been a journey of kind of living with that for basically my entire life, trying different.

Jen: 1:45

Interrupt you for just a moment. And you said this started when you were five years old. Yes, and so to lose your hair at five years old? How did you handle that?

Elizabeth: 1:54

Yeah, well, I have like flat, to be honest, I think, because I was so young I don't remember much of it. And my mom said I was honestly sleeping through most of those five weeks because I was so weak and tired and like ill and medicated and all the things. So I don't remember much of it. I have flashes from it. But uh, my mom said it was pretty sad and devastating to just like see clumps of my hair falling out and like I'm just a small kid in the bed, practically like not speak, like she's like I could, that I could barely manage like to even open my eyes and like nod, to like say yes to things. So, um, yeah, I, I honestly, thankfully, was able to overcome all of that. I obviously have my hair back. You know I've had.

Elizabeth: 2:37

I have a very loving family, very supportive. They've made lots of sacrifices to get me to this point Great family, friends, support. My mom always also said that I was very tenacious as a child and very determined. So I think that was a big part of it too. My mindset and like just like focused on like getting better and I have to say I was. Once I got diagnosed, I was very lucky to have a really great rheumatology team growing up who really did take into consideration how I was feeling. Sometimes they'd be like, oh, you're fine, but then I'd be like, no, I just, I know my body, something is up, and they would actually genuinely listen to that and do more testing or whatever was needed. So I think all those things really helped me to get to the point where I'm at today. So I have to say I'm really quite lucky.

Jen: 3:23

That's incredible. How do you feel that your treatment care plan has changed over the last 20 years?

Elizabeth: 3:31

Yeah, Well, growing up I would say and the rheumatologist told us this that well, lupus is really quite rare in children and that they find that in children lupus tends to be a little bit more erratic and more intense but that as you get older it kind of mellows out and stabilizes a bit Again. It affects everyone differently and so growing up it was kind of I was in the hospital a lot either with complications from being immunosuppressed, like having random infections and things like that, but also just other treatments that I needed to get when the steroids weren't working. But I would say now I'm very stable and my treatment plan is, you know, I'm still on medication. My goal is to really just get to a point where I don't need that anymore. But you know it's a slow, gradual process, working with my body and my doctors, and so no more hospitalizations, at least anytime the last few years. Just, you know, manageable, just taking a few medications, low doses and really focusing on lifestyle.

Jen: 4:30

So how many medications are you currently on? If you don't mind us asking yeah, so right now I'm only on three right now.

Elizabeth: 4:40

When I first started my mom said it was handfuls of medications. Throughout the years some would drop, some would get added. There was again a couple of like IV transfusion type ones that needed to happen as well throughout the years to stabilize. But yeah, right now I'm down to three and very low doses. So I'm very, very excited and happy about that.

Jen: 4:59

What are the side effects?

Elizabeth: 5:00

like Well, right now because I'm in such low doses, I would say I'm not really struggling with too many side effects. But growing up, you know, especially everybody knows the horrific side effects of prednisone, my dear old friend there. Um, you know, I really struggled a lot with moon face, the swelling, the, the body swelling it feels like I'm hungry all the time um, and the sense of like anxiety inside. It makes you feel like stressed out and and stuff like that. And then you know the longer term effects that you hopefully never get. Like you know they can cause a cancer and other terrible side effects. So thankfully, knock on wood, I haven't dealt with those extra side effects. But yeah, definitely was a struggle.

Jen: 5:42

I almost feel like we should nickname the prednisone effect and call it the marshmallow man effect, because it makes us feel like that marshmallow guy off of Ghostbusters, I don't know. Anyway, I agree Definitely. I don't know why that random thought popped into my head, but I was like, oh, we should just nickname that. Looking back, is there anything you wish you had known at the beginning of your journey?

Elizabeth: 6:08

I mean granted, you were young, but still I mean granted you were young, but still, no, there's a lot From what I know now. I would say that I have control over my health. I think for a long time I felt like my health was not in control and I didn't have control over it and there was a little bit of like wondering when the next flare was going to happen and having to be super careful all the time flare was going to happen. And having to be super careful all the time and just really not being able to do certain things growing up because, well, you have to watch out the lupus, you don't want it to flare. So I would say I really feel in control of my health now and I know how to listen to my body, be in touch with it and honestly trust it. And so I would want to tell my younger self that this is possible and that you I do have full control over my health.

Jen: 6:58

Yeah. Is there anyone else in your family that has lupus or any other autoimmune?

Elizabeth: 7:03

No one else has been diagnosed with lupus itself, but there is definitely autoimmune, like symptoms and other members of my family or other autoimmune diseases that have been diagnosed. So it definitely is a trend in my family other autoimmune diseases that have been diagnosed.

Jen: 7:18

So it definitely is a trend in my family, but no one else with lupus. So next I want to ask you about your Spoonie toolkit.

Elizabeth: 7:23

What are the top five things that are important to you. Yes, okay, there's a lot of things I do, but let me see top five. I would say the first one is working on my mindset and my general energy. So I'm huge on meditating in the morning or doing some kind of mindfulness practice, whether that's and it depends on what I feel like that day. You know, like meditation, breath work, I really like somatic practices as well.

Elizabeth: 7:50

I would say movement is another huge one for me. I feel I meet myself where I'm at every day. I have to say I'm at a really strong place right now. I can actively follow like a fitness routine and feel strong in it. But some days I just I'm not up to it, and that's okay. So I meet myself where I'm at. But movement is a big one. It really changes my mood when I do that.

Elizabeth: 8:11

I would say really prioritizing downtime, like I actively schedule that into my week and I make sure that nothing else takes over that time and I make sure that it's time alone with myself to just decompress. And socializing is important too and I make sure to have time for that, but that recharges you in a different way. But making sure I have that rest for myself is really important to me. Feeling really good, let's see.

Elizabeth: 8:38

I would say nutrition is another huge one. I take really careful watch of my nutrition. That's not to say, you know, I don't indulge and enjoy, because that's important too for the emotional side, but I have learned a lot of things about what works for my body, nutrition wise, and so I'm very conscious, without feeling stressed out about it. I've really come to a place about that to enjoy my food and not be stressed out about it and watch it. And I would say the last thing would be to not take things so seriously. It's really easy to get caught up in your head about the pain or if you're not feeling well one day, maybe you're on a streak of feeling great one week and then all of a sudden you just feel like garbage and just not taking it seriously, meeting myself where I'm at and making fun in a way. It's okay, it will pass and there'll be a new day tomorrow, yeah.

Jen: 9:31

How do you deal with sun exposure?

Elizabeth: 9:34

Yeah, the sun is a big, big trigger for me, um, in my childhood, um, so I'm huge on sunscreen. Um, I make sure not to go outside during peak hours if I can avoid it. Again, I'm not going to be, not like stuck inside. If I want to be outside, like I'm not going to stop myself, but I'm, you know, conscious of it if I can avoid it. And lots of hats, I use lots of hats and UV protective clothing. If I can or if not, again sunscreen. Those are my main things I do for sun protection.

Jen: 10:05

Do you get what people refer to as the typical butterfly rash?

Elizabeth: 10:10

I haven't had that in probably a decade, I'd say, but I definitely had it growing up and it was pretty, pretty strong, especially when I was flaring.

Jen: 10:18

Kind of tips and encouragement. Do you have any advice or mindset tips for people on a journey such as yours and that I work with people on is sleep is number one.

Elizabeth: 10:37

We all know, all autoimmune sufferers know the importance of sleep. It's magic, it's a magic pill. Yeah, I need my eight to nine hours every night to, you know, and it's if I know when I don't have it. So, definitely, prioritizing sleep and how to have quality sleep. The other thing would be stress management no-transcript.

Jen: 11:23

Absolutely so, staying positive. How do you maintain that positive outlook despite your challenges, that you face, and how do you strive to live your best life?

Elizabeth: 11:27

Yeah, it's taken a little bit of trial and error and I think everyone has to find what works for them, but for me, I really like to use gratitude as a tool to help me stay positive and to focus when I'm not feeling well or something isn't going right. To focus in that moment on the littlest thing that might be going well. It's like, okay, if I have pain all over my body, is there one spot on my body where I don't have pain or that feels good? And focusing on that and then expanding on that, it's like, okay, is there another spot that maybe doesn't feel so bad? Maybe I am grateful because I have the time to rest today and I don't have to stress about that. I don't have other responsibilities. I can take that time for myself. So really focusing on what is going well and doing gratitude every day, I think, is a really key piece.

Jen: 12:16

Do you have any resources that you recommend?

Elizabeth: 12:18

Let's see. I find the I find actually the materials on the lupus, like associations, really helpful for getting started. I myself have a energy reset starter kit that I I offer up to people I work with that has um eight tips for people to work. You know um incorporate into their lives to help them boost their energy and reduce their pain. Um it has a diagnostic quiz and then like a healthy habit tracker that helps them keep track of incorporating that Um and so I find that people find that really helpful to um kind of get started and learn more.

Jen: 12:54

And so that's a good segue here. I think we haven't even dove into what it is that you do, so you are a certified integrative nutrition health coach. You are certified in detox your life course at Institute of Integrative Nutrition and a graduate of the Health Professional Academy.

Elizabeth: 13:18

Do you mind telling us a little bit about all that? Yeah Well, that all started a few years ago. Over the years, as I've been trying to figure out what works for me and other alternative options to managing the lupus, that was not necessarily Western medicine, so this kind of East meets West situation was what I was interested in. I tried everything. I've tried different diets, I've tried all the protocols you could think of all the herbs and supplements, everything and I eventually stumbled upon functional medicine and this idea of getting to the root cause of disease, not just treating the symptoms, and I was obsessed. I learned everything I could about it and that led me to studying at the Institute for Integrative Nutrition and getting my coaching certification and I've just spent years studying on like what works under, experimenting on myself and finding those routines and working with other people on that. That's kind of where I've ended up with that.

Jen: 14:16

That's kind of where I've ended up with that and I've you know had really great results from doing that, so tell us more about your starter kit yeah, so the starter kit is kind of an introductory starter.

Elizabeth: 14:26

What's the starter kit? So it has a diagnostic quiz to help you understand what are some things that you could change to help you improve your energy levels, that are maybe common misconceptions or things that people might not know might be affecting their energy levels. And then there's kind of eight tips that I recommend that are all kind of lifestyle based to help you boost your energy naturally. And then there's a habit tracker for those eight tips to kind of help you track them over a week and see how you're doing.

Jen: 14:55

And you offer all of this for free. Yes, so, once someone does that, if there's something that they're wanting, if they're craving more from you, is there anything else that you offer?

Elizabeth: 15:07

Yeah, Well, you can find the certificate on my website, and that's a great way to get in touch with me, and so my website is wwwrevellinghealthcom, so that's R-E-V-E-L-I-N-llinghealthcom, so that's r e v e l I n? G? Healthcom, and I also do, once in a while, a five day challenge to help people manage their pain, and so that's a challenge that you sign up for Over. Whenever I run them over five days, you'll get an email with a video from me, with a tip that gives you how you can manage something you can incorporate into your life to help you reduce your pain or manage it. And so, and it comes, there's a live you know community and there's like prizes to be won and you know tips, like a live video for me every day while those challenges are running. So that's also all free, and you can find that at wwwpainfreechallengeca, and so whenever those are running, you know you can follow me on socials and everything and see when those are on.

Jen: 16:03

And we'll definitely have the links available in the show notes for anyone that's interested. But I love everything that you're doing and that you're truly wanting to help the community, and you're offering a lot of this free of charge, which is incredible, because you don't see a lot of that.

Elizabeth: 16:22

Well, thank you, I'm just glad to be giving back, and I really just want to share with people what I've learned. I feel like I've transformed from where I started. It hasn't been easy, but I just feel the sense of confidence and trust in my body like never before, and it feels like a transformation, like it's not going anywhere anytime soon, and so I want people to know that they can achieve that for themselves, and that's why I'm giving all this stuff for free. People can come talk to me if they want to, and I just want people to know that they can experience that too.

Jen: 16:53

Incredible Changing directions again. Anyo, but how have your friends and those that are close to you do they understand what goes on with you and do you feel like they're supportive?

Elizabeth: 17:07

I would say, yes, my family is super supportive. I'm very grateful and lucky to have that and I was given a lot of leeway for time for rest and things like that growing up. So I still am, so I'm very thankful for that and for friends. I've always had like a core group of, like small core group of friends that I would share these struggles with. I don't I was always I'm a bit of a private person in that sense, so I don't share, unless I need to, with just anybody. If I'm really like struggling, then I will and I have no fear about doing that. You know I own up to where I'm at, but having that core group of friends who really knows what's going on with me, I think has been really important and they're very understanding and supportive that's really good, because I feel, like you know, in the community we've we've talked to several people I'm sure you have as well that they don't really feel like they have that at home and it it's great when we meet people that feel like they are truly supported.

Elizabeth: 18:02

Yeah, I think it's such an important piece to you know getting better and feeling good in your body to have that community and that support. And you know, unfortunately for those that don't have it, it's a very sad situation. But there's so many great resources out there and communities that you know, like this podcast or other groups that you can get in touch with and talk to people who really understand what you're going through and there is a certain solace in that and talking to other people who really understand. So you know there's always options out there, I think.

Jen: 18:35

Yeah, definitely. Have you ever been in a support group before?

Elizabeth: 18:39

No, not myself, because I feel very lucky with the support I do have. But I will say that as I've been on this transformation journey and been, you know, coaching people and working on this, hearing people's stories and, you know, talking to people such as yourself and other communities online, has been kind of this like opening of a world I didn't know existed before and it felt it's good to feel seen because you know I have the support and, again, super lucky. But sometimes it's good to just talk to someone who understands, like that specific pain you might be going through or what the you know. Like you're not sure to talk to if you should tell someone that you're not feeling great that day and that kind of thing. Just it's more of a feeling of being seen and I think that can be very healing.

Jen: 19:24

I agree, and for the longest time I didn't think I needed a support group because, like yourself, I was diagnosed 11, 12 years ago.

Jen: 19:34

Now I don't even know, we lose track right, and I didn't think I needed anything like that.

Jen: 19:39

And I did join one and I thought, okay, I'll come in as, like, the pro that knows all the things I can give you advice. But then I discovered that, quite honestly, it's just a nice place to be able to vent, sometimes because I don't know about you, but sometimes it feels like I don't want to burden and annoy the people in my life. I don't want to make them feel like this is all I ever talk about, is my aching, whatever it is that week, and so sometimes it's just really nice to vent to someone outside of it. And one thing that a lot of people have told me is find the support group that meets you where you're at, because there's so many out there, big and small. I mean there are ones full of hundreds of people and that's a little overwhelming. And so I would say to anyone listening keep searching, find the one that's right for you and what your needs are, and with people that you're comfortable with, it should feel like talking to an old friend.

Elizabeth: 20:38

No, I couldn't agree more yeah.

Jen: 20:39

Well, is there anything else that you wanted?

Elizabeth: 20:42

take control of your health make changes, and you know it's not easy, but there is when you start making changes in your health and taking that control. It's amazing the things that can happen, not just in your health but in your life, and so I really want people to know that this is possible. You can be your most radiant self and feel trust and confident in your body, and so, yeah, that's kind of what I want to leave people with today.

Jen: 21:28

I love it. I love it. Well, you are definitely always welcome to come back anytime.

Jen: 21:32

You've been a pleasure to hear I am looking at the time, going, wow, it's only been 23 minutes, but we hit everything, every question we soared right through and that's part of why I asked if you had anything else, because we just did, we just soared right through it. But you've been a pleasure to have on here and, yeah, I want everyone to go check her out. I will have it in the show notes that this is Elizabeth. I'm going to butcher your last name, do you want?

Elizabeth: 22:01

to say it for me, lucero I know, I know To me.

Jen: 22:03

I'm like okay, is that French, is it Italian, is it Spanish? I don't even know, but it looks all fancy and I don't want to butcher it.

Elizabeth: 22:10

No worries, it's Italian for anybody who's wondering. Well, I love it.

Jen: 22:15

Well, yeah, Until next time my spoonie sisters go find Elizabeth. You can find her on Instagram I'm sure you have other socials as well and, like I said, we'll have everything in the show notes. So until next time, don't forget your spoon.