Battling Cushing's: Jewel’s Journey

What happens when a determined spirit meets a daunting diagnosis? Join us as we hear from Jewel Dukes, who courageously shares her battle with Cushing's disease. Discover the emotional rollercoaster she faced, from the challenges of weight gain, depression, and anxiety to the life-changing brain surgery to remove a tumor from her pituitary gland. Jewel's story is not just about enduring a rare disease; it's about the powerful connection and hope she found within a community that supports and uplifts her.

The path to finding support after a rare disease diagnosis is seldom straightforward. In our conversation, we explore Jewel's journey to connect with those who truly understand her struggles, especially on platforms like Facebook. We dive into the dual challenges of Cushing's disease and Lipoedema, shedding light on the pain and limited treatment options due to insurance obstacles. Jewel shares her wisdom on creating a practical toolkit for symptom management and the necessity of self-care, even when life seems overwhelming.

As we discuss holistic wellness, the episode also highlights the benefits of alternative therapies such as acupuncture and stretching for recovery and performance. We tackle the financial barriers to accessing these therapies and stress the importance of listening to one's body. Moreover, we underscore the need to support our friends who may be silently struggling, and how businesses like Crafted with TLC provide creative outlets and community support. As we gear up for Rare Disease Day, we celebrate the resilience and solidarity that Jewel and others find in shared experiences.

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

Chapters

• 0:00 Jewel Dukes
• 8:09 Finding Support for Rare Diseases
• 15:33 Holistic Wellness Practices and Support
• 21:51 Supporting Friends and Rare Disease Day

Transcript

Andi: 0:08

Welcome back to my Spoonie Sisters podcast. I'm Andi, and here with me today is Jenny and Megan. In honor of Disease Day, we are joined by Ms Jewel Dukes, who bravely shares her journey with Cushing's disease, from battling weight gain, depression and anxiety to making the life changing decision to undergo brain surgery. Jewel's story is one of strength and resilience. Today we'll discuss the vital role of community support in managing chronic illness, and Jewel will share how her community has helped her through medical procedures and recovery, as well as her strategies for coping with the unpredictability of her condition. Plus, she offers some insights from both Cushing's and Addison disease patients, while staying strong in the face of adversity. We are super excited to have Jewel here with us to catch up, to share her wisdom and her journey. Welcome, jewel. Hi. Thank you for having me. Thank you for spending some time with your sisters. Can you share how your journey with Cushing's disease began In?

Jewel: 1:11

2020, right as the pandemic started, I had too many strokes and could not figure out why, what happened? All the doctors, the MRIs, couldn't figure anything out. So I went on this health journey. If you eat healthy, you exercise, everything becomes great, right? So that's what I did. I started eating healthy, I started exercising and I started gaining weight. I went to my primary care physician oh, you're not doing anything, right? Go see a nutritionist because you don't know how to eat. So I had to go see a nutritionist. I had to go see a nutritionist because you don't know how to eat, so I had to go see a nutritionist. I had to go see a physical therapist. And all these people are telling me things that I already know. I went to my gynecologist and I'm like hey, can you check my hormones? Can you do something?

Jewel: 2:05

but this I'm gaining weight and I'm working out and I'm eating healthy, and no one believes me. He told me I need to go see an endocrinologist. I go see an endocrinologist and her first words to me were I can give you medicine to help you lose weight. And no, that's not what I want. I want you to figure out why I'm gaining weight. So she's like well, there's this test we could do, but you'll have to come back on Monday to do it. So I have to take a pill on Sunday night and come back in Monday and have a blood test. It was a cortisol test. When I tested my cortisol, she called me back and she said well, did you take the medicine? I'm like, yeah, I took the medicine.

Jewel: 2:43

My numbers were astronomically high. It was supposed to be at a I can't even remember the normal level, but mine was a 16. I think it's like one point, something is where it's supposed to be. So she's like well, I'm gonna send you to get an mri. I went and got an mri and, um, it showed a tumor on my pituitary gland. So what she told me was well, we'll just watch it. We'll wait and see what happened. So me, of course, being me doing research. I knew that that wasn't correct, that in order for it to go away they had to remove the tumor. I took all of my documentation, went to another endocrinologist and she told me yeah, you have pushing disease, you need to get the tumor removed. So I saw her in August. By October I was having surgery. So going through that process, it was a long process, it was a very scary process and I don't want to ever go through it again.

Andi: 3:41

So you sprinkled in some brain surgery just now. What was that like? Let's address this from a couple angles, because I want to pick your brain. Pun intended non-medically, but metaphorically. What is that like mindset wise as you're preparing for somebody is about to go in my head. And then how did you prepare your family for that?

Jewel: 4:01

Going into your brain and it is scary, it is the worst thing somebody can tell you. That's how I felt. I'm like you want to go into my brain and remove it. But from what they told me, well, we'll remove it and you'll be fine, Everything will go back to normal and you'll lose all the weight and you'll be good. Well, that didn't happen for me. So in my mind I'm like okay, I can do this. If it's going to help me, it's going to help me get better. This is fine. My husband and I sat my children down at the time. My son was five and my daughter was 14 at the time. We sat them down and told them hey, I'm gonna have to have brain surgery and mommy's gonna need some help. He's gonna have to help mommy with trying to heal and recover and I need you all to be big kids and help them. I don't know if they really knew the severity of what was going to happen yeah, what?

Jen: 5:04

what role has community support played in your journey, my goodness?

Jewel: 5:08

so when I first found out I was sick, I wanted to go up and tell my story and all the things I thought about and I was like, well, I don't want people to hate me, I don't want people to tell me I'm lying. People can be very mean on the Internet sometimes and I didn't want that. It took me a few months before I finally decided to get online and share my story. So, doing that, I have been met with nothing but love. It's been a big part of my healing being able to talk to people who have my disease, or being able to talk to people who understand what it's like to be sick, because having a chronic illness, there's no way a person who has never been sick can understand. So being able to have that community and have people to talk to was vital for me how do you manage both the physical and emotional impacts of your condition.

Jewel: 6:09

Sometimes I don't, sometimes it manages me. But I used to be a person who did everything. I would rip around all the energy in the world. I could do all these things and help everybody. And what I didn't realize that was because I had a cortisol surgeon through my system. I had no pain, I could do all the things and I was superwoman. I could do all the things and I was super woman.

Jewel: 6:34

I will say today I am physically better than I was a year ago. I no longer have to use my mobility aid on good days. On bad days I still use my cane, but I'm still mentally one of those people who like to do and like to go, and I can do all the things Physically. I'm just not that person anymore. So my body tends to let me know when I've overexerted myself. I don't like when that happens. I don't like when my body has to tell me okay, it's time to sit down. I try to keep conscious that my family, if they see I I drop something, they'll pick it up, because they know if joel picks it up it's probably gonna cause some pain she might pee on herself, who knows? So so, um, yeah, I just try to go day by day, and if my body tells me to stop, I have to stop. If my body tells me, okay, you got a little bit more energy, then I can do it.

Andi: 7:33

What advice would you give to someone else navigating rare disease diagnosis?

Jewel: 7:40

Have a community. For some reason, doctors don't tend to know about rare diseases and they don't tend to know how they affect us. It's helpful when you have somebody who's been through that and who knows. Okay, maybe you should ask your doctor this, or maybe you should ask your doctor that. So community is a big part of why I do what I do and why I reach out to so many people, because it's easier to get help.

Andi: 8:10

So, when you were first looking for your community, what were some of the things that you searched for? If you were newly diagnosed or going through their diagnosis journey, what were you searching for? What was your Googleable item for support communities that led you to your communities? All of?

Jewel: 8:27

a sudden I knew Facebook would have a group so I Googled all types of Cushing's groups and facebook, because that's where I started out. On facebook, um, I googled all the cushing's groups so every cushing's group you could probably find. I'm probably in that group or at least was in that group at some point. That's where I started. Um, I googled and found there are two non that I guess cater to people with Cushing disease or adrenal diseases. At me, to overcome the side effects, the symptoms, how I could feel. Should I feel this way? Is this normal? Is this side effect normal? Am I on too many steroids? Am I not on not enough steroids? Because when I first got diagnosed, well after my surgery, I wasn't on enough steroids and I didn't know steroids and I didn't know. My doctor apparently didn't know. I looked to the people in the Facebook group to help me.

Andi: 9:40

Actually, help me. What advice would you give someone else navigating rare disease diagnosis Do?

Jewel: 9:46

your research, find your community. Being chronically ill is scary. Being chronically ill is scary and having a rare disease makes that even scarier, because there's not a lot of research on these diseases. There's not a lot of doctors who know about these diseases, so it makes it very hard to find information. Being in a community of people who can help you live through the situation that's my biggest.

Andi: 10:14

I can't stress that enough. So, jewel, what's in your toolkit? What's in your spoony toolkit? Steroids? She's on the juice, got it? We juicing.

Jewel: 10:24

I'm on the juice Every day. I take two different types of steroids four times a day. I keep those with me at all times. I keep the pain meds with me at all times. I keep my cane with me at all times, because you never know when you're going to need it. I have my pen that Jen recommended. I can't find it right now, but it's a big pen and what is it called? Jen Dr, dr. I love Dr, my Dr, greg pen. And what is it called?

Jewel: 10:53

Jen, dr, dr, dr Grip I love Dr Grip, my Dr Grip pen. My hands don't hurt. It's amazing. I carry with me everywhere yes, mine's here somewhere up under all this stuff. I'm working so and I'm missing when I'm working. So it's stuff everywhere. But yeah, that that's what's in my toolkit. I carry with me everywhere stuff to use the bathroom. I have a phobia of public restrooms.

Andi: 11:15

So I can't I feel you on that. I'm not a fan.

Jen: 11:18

How about your self-care kit? What's in that?

Jewel: 11:21

Meditation. Um, to be honest, lately my self-care has been very lacking, mainly because I have a million things going on in my life. I'm gonna be completely honest my self-care right now is zero to none. I know that's horrible, but it's me being honest, so we're being real.

Andi: 11:41

We go through those, those moments where we have self-care slumps. Right, that was a segue. I just came out of a self-care slump Ebbs and flows, ebbs and flows. You have the energy for what you have the energy for, and sometimes that self-care looks like you were still. Maybe sometimes not due to our own wanting. Sometimes our body makes us be still and that is what self-care looks like for us on that day. But yeah, you gave your body the rest that it needs.

Linnea: 12:08

Self-care can look so different depending on the day and the season of life that you're in.

Jen: 12:15

There's one topic we didn't really dive into at all. So not only do you have Cushing's, but that's not the only thing you have. Can you tell us a little?

Jewel: 12:23

bit about that. I have Lipoedema, which is a fat disorder. I have these small nodules under my skin that causes pain. Lipoedema is pretty much a fat disorder. It ruins your lymphatic system. My lymphatic system does not work right as far as the fat. I have extra fat in my arms, my stomach, my butt, my leg, only my upper leg, though, not my lower legs. So my upper legs are like this and then it goes like really small and I have these really tiny ankles. It causes pain. There is no cure for lymphedema. It can be taken care of by liposuction, but a lot of insurance companies do not cover it. So you would have to go through appeals and have documents out the butt to try to get your insurance to cover it. But in my case I am not a candidate for surgery. Because of me being on steroids and my immune system being too low, they don't think I would survive an infection from having surgery.

Jen: 13:32

Would it come back, though, if people get that done?

Jewel: 13:35

It can come back, and it can come back in other areas that you haven't had. Can you describe what the pain feels like? It's like feeling just sore all the time, but if I'm touched it hurts. So like people hug me and those type of things, it kind of hurts. My kids don't really sit on my lap or be rough with me. It's like touching the skin.

Jen: 14:00

I almost picture it like you're covered in a bunch of painful knots and having anyone touch you is like oh my gosh, away, back away now.

Andi: 14:10

So do you do a lot of lymphatic drainage as self-care or care for, like, your legs? Does that help? Does it?

Jewel: 14:17

hurt. I try, I try. I have a pneumatic pump that I use. My insurance does not cover lymphatic drainage massages and they are about $150 each time.

Jewel: 14:32

I try to go once a month. Some months I can't make it, some months I can. I use the massage gun to kind of break up the nodules. Sometimes when they get really, really painful. I can use the massage gun on the arms. But as far as the legs, I have a pneumatic pump that goes from right up under my breasts all the way down to my feet and it massages my legs. So I do get some relief that way.

Jen: 14:57

Now something you told me about on Instagram when we were chatting is that you do this stretching thing. Can you tell people what it is, because I'm going to butcher it.

Jewel: 15:06

Yeah, it's called the Stretch Lab. I have a video because I'm going to butcher it. Yeah, it's called the stretch lab. I have a video that I'm going to post coming up here shortly, but it's exactly what it sounds like they stretch you. So, instead of me having to twist and stretch my back, they will actually twist me and stretch my back. They will actually lift my leg up.

Andi: 15:28

It's amazing. I love the stretch lab. They're so awesome. It's amazing.

Jewel: 15:33

The reason I started doing it was because we started taking my daughter. She's an athlete, so we started taking her before her meet and it actually helped her get better time. So I'm like, well, if it can help help her, why can't it help me? So I started going and it's amazing, and if you have one in your area, I definitely recommend it.

Jen: 15:55

I picture it like going to the chiropractor times a hundred. You can see that Because I'll tell you when I go to the chiropractor, even if I'm not popping, the stretching me feel so incredible. I picture it being like that, but even better. All right, andy, I saw that face you were making. Tell me what you're thinking. Yes, yes, I want to know. I want to know. People think we're funny anyway, we got to hear it.

Andi: 16:20

Your word choice. Your word choice. Your word choice, the word choice Not you. Joel, jen, stretching me out, stretching me out. Then go to the chiropractor, he stretches me out and it feels so good. Your word choice. Okay, your word choice. And I was in the military and I worked around a whole lot of males, and so my mind goes exactly there. It sure did. I can't hear it now.

Jen: 16:43

Jen, I can't. Would it help if I tell you the physical therapist, a woman, also helped me with that too? Does that help or does that make it worse?

Jen: 16:51

made it worse the woman also stressed you out made it worse okay, it doesn't matter if they're male or female, but a person helping your body, yes, across the board, but man, a person helping you to feel like you can relax better. I mean, I don't want to take away from the humor we got to let people laugh, but in all reality, anything that we can do to help our bodies. I do want to talk about acupuncture. The one place I did find somewhat local looks very, very expensive, but then again I don't know how much it should cost, so I think it is expensive because when I was looking up it was very expensive.

Jewel: 17:27

So, aside from the brain surgery, december 2023, I had spine surgery and from that I have nerve damage down my left side of my leg.

Andi: 17:39

And did it lead you to acupuncture? Is that where we were going? Okay, and I'm like I can't afford that. Others mean that insurances don't cover as much complementary or alternative care as they should. If they just covered some cam care just a little bit, you would have less people in your waiting rooms with ailments where you're writing scripts, because it works very, very well with any of the physical therapies and just like cupping works super well. Certain places and certain insurances you can get to cover your fitness component. So look at what your insurance is to see if it will cover your one-time fitness component to not exceed whatever their cap is. But they have written it in in such small print now that you don't know what's there. But they may or may not cover one, a one-time holistic anything, but it is expensive to not want to be on a bunch of medications for stuff yeah, but see, if they covered that, then you get.

Jen: 18:39

Well, then they don't there you go, there you go one thing that I think is pretty cool is if, for the elderly anyway, they have a thing called silver sneakers that covers a gym membership. Yeah, I didn't know about that until my mother-in-law moved in with us, but they changed her insurance and now she doesn't have silver sneakers anymore. Of course, dumb it's all dumb. Okay, megan, I want to pry some questions out of you. What kind of stretching or at-home things would you recommend to someone like Jewel dealing with the things she deals with?

Linnea: 19:12

I mean, stretching is amazing, I feel like, honestly, for anybody. Sometimes I feel like it's more helpful than the chiropractor, because there are so many chiropractors who don't even really touch on the stretching component, and sometimes those muscles are like the tightness of the muscles is the reason why things kind of fall out of place, and if you're not fixing that part of it and just, you know, getting things back into alignment for however long, like a day or a week or whatever it's so likely that it's just going to come back out of place. So the stretching, I think like whatever feels good for you on whatever day it is, that's going to be the best thing. So yeah, the stretch lab I've heard amazing things about it.

Linnea: 20:01

You gone? What was that? Have you gone to the stretch lab? I haven't. I don't think I have one in my area. I'm going to look again, though, but last time I checked I Googled it and I didn't have one, and I live in rural Iowa, so there's not like a ton of that stuff around here. But I have had a few clients who go to the stretch lab and they just rave about it. They're like this is the best thing ever. What is a copay?

Jen: 20:47

like, or is it a copay? Do you have to pay a full price to go to a stretch lab?

Jewel: 20:51

Yeah, I can't remember if it was through my I think it's through my bank. They have a program where you can get a discount. I ended up getting a discount and it was $130 a month for stretching once a week, which was not bad. I thought you were going to say $130 a month for stretching once a week, which was not bad.

Jen: 21:11

I thought you were going to say $130 every time. Okay, so pretty any better than I was thinking. Okay, Andy, I want to also ask you what tips would you give to Jewel?

Andi: 21:20

Well, I would tell Jewel to sit down somewhere, because we've had this conversation. I would tell her to sit down somewhere. I would tell her that her brain needs a vacation and deserves a vacation at times, too, that she spends a lot of time fighting in a body that's fighting against her and I know that she's tired that it's okay for her to sit down and let people love on her and show up for her just as much as she's showing up for her community, me included.

Jen: 21:45

I 100% agree with you. I think that advice is good advice for everyone.

Andi: 21:51

Y'all check on the strong friends. Okay, we need people to check on your strong friends. They're showing up, and they're showing up with a smile on their face, but it doesn't mean that they're not carrying something really heavy. So check in on your strong friends. Hear their voice, not just their words in a text.

Jewel: 22:06

Call and hear their voice. And I was talking to Jen earlier she said he said usually when you get quiet, I try to check on you, because that means something's wrong. I'm like, I'm over here, just like treading water, but it's not sustainable.

Jen: 22:20

We can only tread water for so long before we drown and this is us.

Andi: 22:24

I don't understand this analogy because I can't swim, so I don't understand the analogy. I can't swim or tread water. I instantly drown in this scenario. So I instantly drown. My bones are heavy guys. I instantly drown in that scenario.

Jen: 22:37

So I think you need a floaty.

Andi: 22:42

Yes, I need a floaty.

Jen: 22:44

And even the floaty can only carry you for so long. So I think this is my reminder to all of you have those people I mean you draw that for me. We all need that. We all need those people that we can call up and say hey, I'm barely treading water, my floaty's got a hole in it, I'm drowning quickly. Let's talk about it. Okay, you also have a business. What's about your business?

Jewel: 23:07

My business is Crafted with TLC and I make awareness apparel, custom gifts. Right now I'm working for Valentine's Day, so I have some pretty cups that I'm making. It started out as just my way to get my mind off of what I was going through. It was something that I like to do, so I'm like, hey, if I got to be in this house all the time because it's hard for me to get out, then I'm going to do something that I like to do. That hobby turned into my business. I have been so blessed to be able to give back to the chronic illness community. They think the point of a business is to make money, but for me it's to feed people's minds, and if that means giving you a pretty cup is going to make your day, then I want to be that person to give you that cup. So for me it's just seeing people happy and seeing people enjoy the things that I make with them.

Jen: 24:14

I think it's also a good break for you to get away from the thoughts in your mind about what you're struggling with and your pain. You might still be in pain as you're creating these things, but it's a healthy distraction when you're capable of doing it. We all don't always have the capacity to do the things we love and we enjoy, but when we can man, what a wonderful distraction that is.

Jewel: 24:34

Oh yes, it helps. It definitely helps, even to the point where my husband, like Joel, I can tell that you're in pain. You probably should get up. I'm like, if I can just finish this one thing, but it's definitely an attraction and it's helped me. To be honest, I couldn't tell you where I would be without me starting my crafting business. It's helped me mentally, it's helped me physically and it's just something that I love to do.

Andi: 24:59

For Valentine's Day. Are you running any specials with Crafted with TLC?

Jewel: 25:05

I am not running any specials. So the way it works my business. I cannot promote every holiday. I cannot. So unfortunately, no, I don't have any specials going on for Valentine's Day, but everything on my website is there. I don't think my prices are astronomically crazy. I don't believe in that, like if you want something nice, you should be able to afford it, and if it's not gonna hurt me then I'm on for it. So yeah, I I just try to keep up with what I have going on. Right now I have a few orders, so I wasn't able to get to Super Bowl and I wasn't able to get to Valentine's Day. But with me being chronically ill and still having to run a business, I try my best to do what I can.

Andi: 25:55

Yeah, y'all, if y'all don't go out to her socials and check it out, because she does random stuff at 11 o'clock at night and it's always fire, it is always fire and I'm like go to sleep, but then don't go to sleep because then I won't be able to see these things that you're crafting, but it's always really dope things, guys thank you.

Jen: 26:15

Do you have any fun rare disease day projects or designs that you're working on?

Jewel: 26:20

I do, and this is a surprise so excited, so I can give away one thing. I will be on Charles MediHelp, based out of Chicago. It's having a Black History Month program, I guess, and I will be speaking live for Rare Disease Day and I'm very excited about it. She is a supporter of my business and I'm definitely a supporter of hers. So if you don't know Sandy Washington, get to know her, because she's an amazing human being. She has a wealth of knowledge for chronic illnesses and insurance companies and she's helped me with so many things. And guess what y'all? She does it for free, so that is what I'm doing. I do have some items that I'll be coming out with for Rare Disease Day, so I'm getting those together, trying to get those posted here shortly, but I am very excited. I celebrate Rare Disease Day every year, whether it be balloons or get a cake or something, so I'm excited to see what this year brings.

Linnea: 27:29

Yay, I'm so excited I know that we've met each other and connected, obviously through the Mindset Support Group, but it's been so, so amazing getting to actually hear all of of your story and your resilience, just like, shines through and you're such an inspiration and a source of light, so I just want to throw that out there, thank you.

Jewel: 27:54

I love you all Like. So, like you said, the mindset group, I try to attend. My brain doesn't work like it's supposed to. I try to attend my brain doesn't work like it's supposed to. I try to attend when I can. And Jen, if you message me, I try. I'm like I can't remember stuff and but I love getting to talk to you all. I love getting to work with you all and be working with Andy with Village Street Health, which is another nonprofit that I work with, and Jen now coming on Village Street Health, which is another nonprofit that I work with, and Jen now coming on Village Street Health. I'm super excited and you guys have no idea how much you mean to me and I truly appreciate you all and all the love and support that you all give to me and the chronic illness community as well. I love you.

Jen: 28:40

I just love you. I hope you know that and always remember it.

Andi: 28:43

I'm a thug for real. You're not going to make my eyes sweat. I'm too tender to cry.

Linnea: 28:47

We love you so much, Jewel.

Jen: 28:49

Thank you. Well, thank you for coming on and sharing more of your story. I know we've had you on the podcast before, but it's been, oh geez, like almost two years, I don't know. It's been a bit, a bit so. So hopefully this was a deeper dive. Now that I've gotten to know you better, I hope we were able to cover more and share more about it. So thank you for your time and for sharing so much and all the advocating that you do for the rare disease community. I know everyone appreciates you. Well, until next time, don't forget your spooch.