¶ Living With Cushing's Disease
Hi , my spoony sisters . I am your host , grace Fleachette , and I have the pleasure of introducing you to a phenomenal lady . I've been getting to know probably about the last month . Hi , jewel , how are you ?
Hi Jen , How are you ? I'm doing well . I'm doing well .
I mean well , sort of . I already told Jewel before we started the recording . I was up until 2 am . Don't drink plant-based energy and then mushroom coffee all within I don't know a six-hour span of time and then hope to go to sleep before 2 am . That's my advice for the day . That's my advice . All right . So , Jewel , let's start with .
How about you give us a little bit of an introduction and share your diagnosis story with us , and , of course , we'll dive in and do some questions along the way .
Okay , my name is Jewel Dukes and I am in remission from Cushing's disease . I had too many strokes . In May of 2020 , right after the pandemic started , when I was in a hospital for about three or four days , they could not figure out what was wrong with me . They did MRIs , they did CT scans , they did chest x-rays .
They could not figure out why a 35-year-old girl was having many strokes . So I decided that I would go holistic and see if I could get my health better . So in January of 2021 , i decided to go completely plant-based . I started exercising every day and I just started suddenly gaining weight . I went to my doctors .
They kept sending me to nutritionists , telling me well , you're not exercising , you're not eating healthy , they'll see a nutritionist . And it bothered me because I'm like , i'm doing these things , they're listening to me . And I went from 180 pounds to 280 pounds before anybody would run any test on me .
So eventually , my gynecologist told me that I need to see an endocrinologist because he's like , if I need to give you hormones at some point , then I need to know what's wrong . So eventually , i went to an endocrinologist and this lady tested my cortisol levels And they came back very high .
And she called me and she's like well , what did you take the medicine ? And I'm like , of course I took the medicine . You tested me for the medication . Why wouldn't I take it ? So she's like well , we're going to do an MRI and see if you have a tumor on your pituitary gland .
So we did that and come to find out I did have a tumor on my pituitary gland . I had a five millimeter tumor on this pea-sized gland that we have in our brain . So after she found the tumor , she's like well , you don't have to do anything , we'll just watch it . Well , in me doing my research , i know that the only cure for it was to remove the tumor .
So I took all that information , went to a different endocrinologist And in August of 2021 , she diagnosed me with Cushing's disease , which is hypercortisolism . So with hypercortisolism , you gain weight , depression , anxiety , all of these really bad symptoms that can be very generalized Leprechauns , diabetes , and it breaks down your body against .
It can give you osteoporosis , osteoarthritis , and unfortunately , i ended up getting a lot of these symptoms .
So in October of 2021 , i ended up having brain surgery to remove that tumor And therein , like it was so bad that I got to the point where I'm like I probably should not have had this surgery , because I was so much worse off than I was prior to the surgery . I became immobile .
I had to basically teach myself how to walk again because the pain in my back and my knees were so bad . So now I have arthritis in my knees , my spine , my hips , my neck , all of these things , because my cortisol levels were way too high .
Okay . So , oh my gosh , there's so much to unpack here .
Right .
I mean first of all , gaslighting at is finest right .
Exactly .
The way you were treated and the way so many people are treated when they go to their doctor and share this kind of information . It's concerning . It's concerning to be made to feel like , even though we're doing all the things right , that we're not believed . And how did you deal with that ?
It was depressing . I just kept . You know what I kept pushing . At one point I did get so upset that I'm like you know what . I'm just not going to go back to the doctor because they're not telling me anything anyway . So I figured that the holistic route would help . But to be honest , i almost feel like it made me worse .
It presented more symptoms than it would have had I just got treated for it . So it was all of this time with me not knowing what's wrong and being in pain and nobody's helping me . It was frustrating , very , very frustrating . So , yeah , i didn't know what to do .
So how do you feel about it now that you've done the surgery and now that you're kind of through to the other side ? Do you regret doing it ? Are you glad that you did it ?
Some days . I do regret doing it , but with Cushing's disease it would have only gotten worse . So and I wouldn't have known it until either one I passed away or two I eventually had the surgery , which would have made things that much worse .
So in hindsight , it's a good thing that I did it sooner rather than later , because the progression of symptoms would have been that much worse .
Is there the possibility of this happening again ?
Yes , Cushing's disease can return . the pituitary tumor can return . The chances are not high , but it's not zero . I have a lot of friends that are now going through a recurrence of Cushing's disease after having surgery not even one or two years ago .
I mean that's that's not encouraging . Do they have any option for you that can help us not to come back ?
No , The only option to and actually we just found out recently that it's not even an option , to be honest The only option is to have a bilateral adrenal lexamine . That means to remove both of your adrenal glands so that your body will no longer produce cortisol .
The problem with that is we now have someone in the Cushion community who has regrown adrenal tissue and now has Cushing's disease again . So it is not a hopeful disease and you really have to stay positive . You really have to have people around you encouraging you and you really have to have a great support system to go through it .
Oh my gosh , honey , i just want to hug you . I mean I know we've talked about this before , but you know , talking about it again , it's fresh in my brain again And I just I hate this for you . I really do .
Yeah , it's a rare disease that is just so underdiagnosed that , to be honest , us in the Cushing's community doesn't believe it . don't believe it's rare , we just believe that it's underdiagnosed .
I would not surprise me because I feel like some of these rare diseases , the more that I'm getting to know people in our community and even dealing with what I've got , it's not as rare as they say Exactly So okay , so you kind of walked us through treatment . What do they have you on any kind of treatments at all right now or anything at all ?
Yes . So after surgery that's why I say I'm in remission from fishing , because it never really it's no cure for it . So once you have Cushing's there's always a possibility that you can get it again . But after you have surgery and you no longer have those hypercortisol levels , you then become adrenally insufficient .
So now my body no longer makes cortisol and I have to take a supplement every day . What do I take four times a day ? I take hydrocortisol and I also take RAO's , which is a delayed release present at all . So I take medication , i take steroids , i should say , four times a day , and that's just to keep me upright and able to function .
This past February I had to quit my job because it just became too stressful . I wasn't able to do anything outside of work . So I would work , even though I was working from home and I was able to do it in my recliner and do it pretty comfortably .
The work became I'm an accountant , just saying it became so stressful that after work I would just sleep , and so I wasn't able to spend time with my kids , i wasn't able to spend time with my husband , so I ended up having to quit my job just so I can have to have that time to spend with my family .
And so now not having a job , which I'm assuming you enjoyed , takes one more thing away from you , and then , of course , that can create financial hardships , depending on your situation . You know that's something a lot of families face . How do you deal with that ?
I have a really supportive husband And we go through what we go through together And I , to be honest , i've seen a lot of single women and single parents go through this disease And I couldn't imagine not having help on the day to day basis .
I just need help going up and down my stairs Sometimes I can't go up and down the stairs at all And I need help towards someone to bring me my food or bring me my water .
And it's terrible because it's not a lot of research And there are not a lot of people that have this disease , because it's rare , you know , and so it's important to have a community .
Sometimes we had to have family members bring meals if my husband got too overwhelmed from working and family and kids , and the support system is how we've been able to function .
I think that's really an important factor that you're bringing up is , i think , having a really wonderful , strong relationship with people in a community that will support you . That is important , and it's also important to meet others like yourself , to not feel alone and to bounce ideas off of .
I think a lot of times in our communities here it is so helpful for us to find people . Sorry about my words today , oh my gosh . I'm telling you guys , words are not my friend , but it's just so . It can be such a big impact in our lives to have that kind of support , and so it sounds like you have a really good family of support there .
Did you reach out to like support groups or how did you go about finding other people ?
So there are tons of support groups on Facebook And I do find people . So I go into Instagram and I type in Cushing to V and I'll find people that way . There are two major support groups that I attend CSRF , the Cushing Support Research Foundation They have a once a month support group headed by Leslie , and the National Adrenal Disease Foundation .
They now have a new Cushing Support Group that I've been in for the last three or four months . So those are the only two nationwide or worldwide support groups that we currently have for Cushing's . But there are a lot of people on Instagram . There are a lot of people on Facebook that will gladly help if you have questions . I'll give you a prime example
¶ Community Support for Chronic Illness
. I had to have a colonoscopy yesterday and I reached out to my doctor , which I think I have a pretty amazing doctor . She cares more about my quality of life than trying to rush me off a medication like most doctors do . So I call my doctor and I say , hey , i have to have a colonoscopy .
She said , well , i want you to double your hydroportisone dose the day before and the day up . But like , if you look at the standard of care from other countries , it'll tell you like any procedure you're having like this , that you should have an IV hydroportisone . So I went in there and I'm telling them .
I said , hey , i'm going to be insufficient , i need extra hydroportisone for this procedure . And they told me , no , you'll be fine . We don't do general anesthesia , we only give you Popa Fall . So it'll be fine , don't worry about it . Well , of course , after I have the colonoscopy , i get home and I feel horrible . I started getting this headache .
I started getting hot flashes , just the feeling of I don't feel good , tiredness , but I wasn't sleepy And I'm like , oh God , ok . So what do I do now ? Normally , if I get a headache is because my electrolytes are off balance , so I'll take some salt tablets and lay down and it'll go away in the next 10 or 20 minutes . Well , that didn't happen .
So I said , well , i'll take some extra hydroportisone and see if that helps . But I also reached out to a few people that I know on Instagram and sent them messages that say , hey , i'm having these symptoms . Here's my blood pressure , here's my sugar , my blood sugar Can you help me ? I'm not feeling well .
And they gave me some great advice And it's good to have those type of people to reach out to when you need help , because nobody knows what's going on with your body better than you do . And even with the doctors , they don't get as much training on these rare diseases .
So we have to stick together in the communities because all the time we are experiencing this . So I did have to reach out to some of my community and say , hey , i'm not feeling well , can you help me ?
And they gave me the best advice that I could that they could , and it helped me , and I ended up taking extra medication yesterday And I took extra medication today and I sent my doctor email saying , hey , this is what I did , this is what I'm doing , and she was fine with that .
So it is very important to have those people around you that understand and that are willing to help .
That is such a wonderful resource to have available . If it would have been a few years ago , you might have not known that that was a resource that you would need or have available .
I think that's something really important for listeners to think about is , even if you're not dealing with the same illness that we're talking about right now , there are communities that are there for you .
just dig and utilize hashtags , just like Joel said , those hashtags are there and you can follow them , and so then it's just going to pop up in your feed and you're going to constantly be learning more about that hashtag .
Yeah , When people post about their Cushing's disease , I go at them and I introduce myself . That's how you build a community , That's how you get to know people . It's not enough to just add people and just think that everybody's going to introduce myself and I say , hey , we can be a community together . We can be a support system for each other .
Getting a little emotional here I don't usually do that . This is so weird . I was thinking earlier . I'm like maybe I should go live on Instagram or Facebook , because I come on here and most of the time I'm happy and smiling because that's genuinely the type of person I am .
People don't realize the struggle that we go through on the day-to-day basis just to come up with that smile , just to be able to communicate with people . With adrenal insufficiency , anything can cause your cortisol levels to plummet .
My son walked up behind me and said mommy , one day and it freaks me out to the point where I had to take extra steroids to help me At any point in time it sounds very dramatic , but the reality is I could be in the hospital in a coma from a adrenal insufficiency . I typically try not to show that side .
I do post when I'm on a bad day or post when I'm not feeling well , but when you actually think about the reality of any day I could be sick , or any day I could pass out , or any day I could not be here because of adrenal insufficiency , It's scary .
It's not just pain that we have to go through , It's not just the scary reality of I have to cherish every day with everybody because you never know how long you get .
I think that's a really good point . Also , there's a level of transparency that we try to have when we're over on our socials , but at the same time , we don't want to be like the Debbie Donner , because you don't I might die today . Yeah , we don't want to be that person , being like everybody . Look at me , i'm having a problem again .
You don't want to be that person but at the same time you want to be real and authentic . I guess my example to you is I mean , you've known I was going through shoulder surgery and all the recovery . I did record all kinds of things through the process video clips and taking pictures because maybe this will be helpful for someone .
I had put together a reel and I had no plans of actually posting that reel . Then one day I was like you know what Somebody might need ? this or somebody might need to just see that I'm not always that smiley , happy , bubbly person that they see , because there's more to what we go through . I shared the reel and I was cringy about it .
I was like nobody's going to watch this . Oh my gosh . I looked at it yesterday . I hadn't looked at it in weeks . It's got over 10,000 views . Wow . It goes to show that sometimes we do have to share that hard , cringy thing because somebody needs it , but at the same time it's such a balancing act .
It is . You have to be positive to help people , but you also have to share how you really feel about things or what you're really going through . It's like do I do 50-50? , Do I do 40-60 ?
Yeah , it's probably just going with the flow and seeing what are people needing to hear . What are some topics that are being discussed right now in the community ? What value can I add or who can I help ? I love the fact that I feel like you do a really good job . That's my long-winded way of trying to get a compliment , thank you .
I love the fact that I can meet someone like you and not know a single thing about that kind of thing , but you've shared so much and you've taught me and I just got to thank you for that .
Thank you . Thank you for being a platform where people can learn about these things . I think it's important . Not everything is accessible to us . I think it's important for people to understand that , what we call able-bodied people . they just see us and we're smiling and we're happy . You must be fine , it's like . no , i have to encourage myself .
I have to encourage the people around me , because that's really all we have . All we have is a support system , and it makes a huge difference in our symptoms and our mental health , because that's a huge issue in the chronic illness community .
Absolutely , And I don't think we give enough credit to that . We struggle so hard with whatever is going on in our health and our lives And that has a huge impact on our mental and emotional status . Right , And it's up to us to also do the work and pay attention to what we need .
I love how you gave the example of what went on yesterday and you listened to what you needed . You know how many people would just be like , okay , I'm just going to try to lay down and take a nap and maybe even go down the rabbit hole of tears and sadness and anger . But you did something about it .
You went and utilized the community you have and they helped you . That's powerful .
I am normally an anxious person and it's probably due to the cortisol , which is your stress hormone . So naturally , if you're fluctuating with your cortisol , your stress levels are fluctuating completely , for that where I was going with that , that's okay . I guess they're not either one of our friends .
It's the most . Monday is Tuesday .
Right The reality of brain fog and chronic illness .
Well , you know what , if it pops back into your brain , we'll get right back to it . I do have a question for you , okay , and I'm guessing yours might look a little different than mine because we deal with different things What would you say are the most important things in your spoonie toolkit ?
Wow , my heating pad , my ice pack Those are two of the things that I don't think I could go without on a daily basis My recliner . I bought this recliner on a whim because I'm like , well , i'm tired of laying in a bed and what can I do ?
So I was like , well , i'll get a recliner And this has been the most effective purchase that I've made since I've been sick , because I can lay down without being in the bed all day . I can feel somewhat productive .
We want to feel like we've done something in today And even if it's just getting up out of my bed and sitting in my chair And it's probably better on your back right . It is , and it has a little heat mode and massage mode . It's nice .
I mean , you're looking really comfortable . I'm in a kitchen chair right now And I don't know if you noticed , but I keep like readjusting myself And this is actually the comfier of my kitchen options , because we have those , you know , those stupid metal bar stools . They look really nice .
Exactly .
But they're terrible And the only time they get used is when we have company , and that's not often , because we moved here in October and all our friends and family live about four hours away , so we don't have a lot of company . My husband and I actually sit at the bar stool , okay , oh .
I just got a weird presentation .
Okay , it's telling us we have 10 minutes left . I have the stupid free zoom . I used to have a paid one . It's a long explanation . Listeners probably don't care . If we have to , we will start a second zoom , but we ? I don't know if you can see the time limit up in the corner , but it's there , so don't get freaked out .
All right . So three things are the major things that I have in my toolkit , aside from community . Community , like I said , is very important to me , support systems very important to me , but and I love swimming , swimming I can do everything in the pool that I cannot do in real life .
You know , i can walk , i can move , i can stretch , i can do everything .
I think water therapy is something that people really need to consider if they haven't tried it before , or have you ever tried it ?
Yes .
Okay . So were you the youngest person at the class ? Yes , i was too . I was 32 , almost 33 . And I'm like , oh my gosh , these people probably think I'm pregnant or something , because what other reason would I be here ? It was a bunch of old ladies , yeah . So how did you deal with that ?
They often like , look at me and feel sorry for me And they're like , oh , everybody , everybody that I come in contact to because I look so young When I'm on my walk or on the cane , they want to know what's wrong , what happened .
And me I don't mind sharing at all , but I am the most open book , so I will go into this whole long conversation about my life And it interests them because then they leave like , oh , my God , i learned something .
And it's amazing to see the looks on people face when they realize the things that other people are going through And they're just walking around with a smile on their face .
I think you have an infectious personality . That's what I , that's one of the things I love about you . You are just beaming and your personality just it's just , it's infectious .
¶ Pushing Through Adversity
That's . I posted a story the other day . I was just riding around in a little car at the grocery store And the lady asked me . and we're sitting there picking out birthday cards for one of her coworkers And I'm just having conversations with the ladies at the freak stand And it was the most fun that I've had .
It's a long time at the grocery store And it was just so amazing that I had to come home and do a story about I love that .
I love that Okay . so what kind of tips and encouragement would you share with people that are at the beginning stages of dealing with something similar to you ?
Keep going , keep pushing . Do not if you know something is wrong , do not let the doctors tell you that it's not . Just like I was saying about yesterday , i'm like they're gonna kill me , they're gonna kill me , they're trying to kill me . I'm not gonna let them . So I just think to keep pushing . It's hard , it's tough .
Sometimes we have to cry , sometimes we have to be strong , but don't give up . It could be something that could change your life .
Absolutely Now to go with that . Who or what lifts your spirits on your difficult days .
My children . They are the cutest little , they're amazing and they always want to see their mommy happy . So even my 15 year old I got blessed with her because she is amazing And anything I need she's right there , willing , no hesitation . So they and my son .
He is six years old and he's just a mama boy , and if only he could just get the chance to lay next to me . We don't have to talk , you don't have to touch , he just wants to lay next to me . And they , they are the reason I keep pushing .
I can . just I want people to know you're beaming right now . I just I adore you . I really do . Oh , thank you . Okay , so you shared a couple of resources . I'm going to make sure to have you send me the links . We can put those in the show notes , but are there any other resources that you would recommend to people ?
I don't have with cushions . There are not many resources . You could Google pituitary tumor or cushions disease or adrenal insufficiency . I don't know if you know , but Addison's disease is the opposite of cushions disease , so I don't know , that , yeah , addison's disease is where your body no longer makes cortisol Cushions . Disease is where it makes too much cortisol .
So even with you know , after having my surgery , i'll look at you know tips from Addison's disease patients because although it's different , we're still treated the same .
That's fascinating . I would have never even realized . All right , any last bit of advice you'd like to share ?
Last bit of advice Keep pushing , Keep a smile on your face , Stay whatever you do to calm yourself . Do that . A couple of months ago I had went into a very deep depression And usually I , you know , talk to people , get with my community and I come out of it very easily . But this time I just could not shake it And things kept going wrong .
I couldn't get my medication And at a certain point I made the decision . I'm like you know what ? What I can't change , I'm not going to worry about , And I know that's a lot easier said than done . I did it And everything just so happened to work out And my medication got sent to me three months supply of it , which I've never been able to get .
My RAO , which is a delay release print in the zone , is $6,000 a month And I was able to get a three month supply from the pharmacy through mail-in pharmacy .
¶ Find Your Jewel
So if you can't control it , just let it go . Take it one day at a time and try to live the best life that you can with the situation that you're given .
And find and follow Jewel , because she will brighten your day .
Okay , so And so will , jen , because I look at your videos and I'm like , yes , i love it .
We can do all these hard things . We really can't . We just might have to do them differently , and the best advice I can share is you know , find your Jewel , find your community , because they are going to lift up and encourage you every step of the way . Okay , so what is your Instagram handle so people can follow you ?
My Instagram handle is at the lipidema cushy T ? H E L I P E D E ? M ? A CushyC ? U S H I ? E . That's a mouthful right . And so I also have something called lipidema , which is a buildup of adipose fat . So I got a lot of things going on , as we all . For some reason , we tend to get things on top of things when things start happening .
So , at the lipidema cushy on Instagram and Jewel Dupes on Facebook , okay . And the lipidema cushy on IG Not IG . What is it There ? we ?
go There , you go All right , everyone . Thank you so much for joining and thank you for having me . Until next time , don't forget your spoon .