May Dysfunction Junkies Care: Lupus Awareness Month

It's a new month and a new Dysfunction Junkies C.A.R.E initiative. May is Lupus Awareness Month, we share easy ways to learn more and show support, including wearing purple and recognizing the butterfly symbol. If you want a trustworthy place to start, we point you to the Lupus Foundation of America at lupus.org, including resources that help you understand symptoms and advocate for yourself at the doctor.  Listen, then tell us if you are a Lupus Warrior!

#lupus #lupuswarrior #butterflyrash #lupusawarenessmonth #autoimmunediseases #womenshealth #dysfunctionjunkiespodcast #dsyfunctionjunkiesCARE #wearpurple 

Transcript

SPEAKER_00 0:07

Welcome to Junkies Care, a special edition of the Dysfunction Junkies Podcast, where we celebrate great people and great organizations doing great things. Now, here's your host, Chrissy. Hey Kerry.

What Lupus Is And Why It’s Missed

Carrie’s Diagnosis Journey And Delays

Treatment Basics And Flare Triggers

Advocacy Tools And Awareness Actions

KERRY 0:21

Hey Junkies, I'm Carrie. I'm Chrissy. I am so excited, I couldn't wait for May to come to talk about this fabulous organization for Junkies Care. May is lupus awareness month. And as we've talked about in previous episodes, I also have lupus. So this is near and dear to my heart. Chrissy, what all do you know about lupus? No, it's an autoimmune disease. Good. And it's not great at all, like most diseases are not, because it kind of I believe my understanding is the way the disease works, it kind of your body sort of attacks your organs and things like that. It can, absolutely. So lupus is a very misunderstood and unpredictable autoimmune disease. So you got that right. Good job. Um, it is very difficult to diagnose. Um, it can be a challenge to live with, and the the symptoms are so diverse. And what lupus looks for one person is going to be different for another. Um, and it's just it really is a very complex autoimmune disease. It causes a lot of inflammation in many parts of your body, and it can cause a lot of organ damage. So um interesting though, is what percentage of women do you think, or how do I word, how do I word this? So lupus can men or women, but of the people with lupus, what percentage of it do you think are women? If you're saying everybody who's been diagnosed with lupus, yes, men and women, what the percentage for women who have been diagnosed versus men? 80% are women. Very close. You're very close. I think it's actually 90%. So, yes, it's definitely one that is women more than men, but men can get it too. And it's very hard to diagnose because you know the symptoms can mimic so many things. My lupus journey started honestly back in my early 20s. And one of the first things that I noticed was I would get it's called Renault syndrome. So literally it would look like half of my hand was dead. Like there'd be a line across my hand, and my fingertips would be dead white, just dead white. And then the rest of my hand would be normal. Um, and I like couldn't explain it. So I went to the doctors at that time. I was working um scuba diving in very cold water as part of my job. And they were just like, Oh, it's because you're in 40 degree water every day. That's why you're just your blood is just shunting from your hands, and oh, whatever. So it was dismissed. This one little symptom was dismissed, and then you know, years later it was like something else, and then it was, oh, it was just this. Oh, you're just tired because maybe you had mono or whatever. And just years of this constantly, but never quite feeling right. And it wasn't until thank God the wonderful doctors at Cleveland Clinic started really listening to me, putting all the symptoms together, doing some tests. Now, there's no specific test for lupus, but there are tests that they can do to kind of help narrow down this to like, okay, you probably have lupus. And through all of that, they did give me the diagnosis and put me on my end. And honestly, my lupus journey has been so much better over the past few years when I finally got diagnosed and proper treatment. But it's horrible. I mean, you can go, it's average six to eight years people take before they get a diagnosis. Um, and they get from doctor to doctor and doctor, and oh, it's just this or oh, it's just that. So it's really is a difficult disease to live with. But if you find the right doctors and you find the right care team that listens to you and understanding your trick treatments and mitigating it, it really helps. So if you want to learn more about lupus, then you definitely need to go to the um lupus of America. Uh, that is our initiative this month, our organization that we're featuring. Their website is lupus.org. And I was on their website today, it was amazing. They had these quizzes that you can take to learn more about lupus. And one of the questions was that question about how many men versus women and how many years does it take to get diagnosed. And it was just very informative. So if you um want to learn more about lupus, or if you maybe have a loved one or a family member that has lupus, I definitely encourage you to go to the website. So but different type of treatment is generally helpful for people who have been diagnosed with lupus. Yeah, I'm sure that probably varies because you said the disease varies from person to person. So right. So, what are some of the treatments? So there's different medications depending on what type there are different types of lupus. So depending on what type of lupus and what part of your body gets affected by it will depend on the medication. Um, but a lot of it is also learning what triggers your lupus. And this is the crazy thing. Sunlight, you've exposure to UV light is one of the biggest trigger triggers for a lupus flare. And for me, that can be devastating because I love to be outside, I love to be in the sun, I love to be at the beach, but the sun is like my worst enemy. So part of this have you been able to combat that? Exactly. So UV clothing. So having like, you know, rash cards that are UV protective clothing. So yeah, I'm the person at the beach that has the long sleeve shirts on, you know, I'll have the wrap or the cover up. I'm very mindful of how much time I spend in the sun when I go out, uh, you know, how what part of the day, you know, just really being careful of that, using my sunscreen, making sure, you know, if I can't, if I am out in the shade. So, like mitigating things that you know are triggers. Certain foods, if you know certain foods are going to trigger it, you know, for everybody, it's different. So um avoiding those kind of triggers, stress, stress, huge. So trying to make sure you're mitigating that. So a lot of it is learning a lifestyle, but then also having the proper medication to help you help your body fight the that is fighting itself, basically. And when you do have flares, trying to control the inflammation in your body. So I really thought it was interesting. I gotta find it in my notes here that the there's no cure for lupus, but the treatment plan you want to help control your symptoms, such as the joint pain, swelling, and constantly feeling tired, keeping your immune system as healthy as you can to stop it from attacking your body as much as possible, and protecting your organs from major damage. So um kidneys often are affected. That's something for me that the doctors are always watching in my eyes. Um, yeah, there's a potential for some eye damage. So, but yeah, everyone is different. So it's a journey. Oh, yeah. So somebody who maybe wants to go to that website and see they might be able to, if they're suspecting that maybe they might have something like this, it might be a good place to start. Absolutely. And have those open conversations with your doctor. And you know, you know your body best. We've talked about this before in our doctor's episodes and our dysfunctional health care episodes, that you are your best advocate. You know when something is not right. And sometimes it just takes finding the doctor that listens to you. And that was one of the things at Cleveland Clinic that I absolutely loved is they actually listen to me, listen to my symptoms, listen to my journey. Um, and I was actually just telling Chrissy before this episode that uh I started seeing a functional wellness doctor, and it was so great. My first visit there, I can't wait to talk about it in a future episode because they listened, they sat and they listened to the whole history, the whole story, not just, oh, you're tired. Okay. You know, it was nice to have some validation. So um, but the other thing about you know, learning more about lupus is just raising that awareness. So, you know, going to the website, learning about it. Um, May is lupus awareness month, so there might be very well a fundraiser or a lupus awareness event in the area near you. You can look that all up on their website. Wearing purple. So this is the close I had of purple for today, but I'm gonna need to get a purple lupus shirt or something. But purple is the color for lupus, and the butterfly is a symbol for lupus because of rosacea, the butterfly rash. That's one of another common um symptom that happens. So, like if I get really upset or if I'm have flair, depending if I eat the wrong things, if and I'm in the sun too much, I get this very intense butterfly rash that's called rosacea. And so the butterfly is the symbol for lupus because of that butterfly rash. So sport your butterflies and your purple for the month of May for lupus awareness. There we go. There we go. All right, junkies. Well, thanks for tuning in today. Uh, we look forward to coming at you all the rest of the month, so make sure to tune in. Hi, everybody.