61. Getting Back Up Again with Keeya Steel

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00:00
Keeya Steel
Wanted to take what I had learned connecting with other doctors and help educate patients, because no one teaches patients how to advocate for themselves. But unfortunately, I know a lot of patients don't want to accept this, but we have to advocate for ourselves. It is our job to learn about our bodies and to be part of the doctor patient relationship. Unfortunately, a doctor is not going to be able to just show up and single handedly help us without our participation. And I know as someone who has had brain fog in an office and wanted to lay down on the floor and go to sleep and not wake up again, I understand how incredibly challenging that can. 

01:02
Jennifer Milner
Welcome back to the Bendy Bodies podcast, where we speak with experts, bringing you state of the art information to help you improve your well being, enhance your performance, and optimize career longevity. This is co host Jennifer Milner, here with the hypermobility MD linda Bluestein. 

01:18
Dr. Linda Bluestein
We are so glad you are here to learn tips to help you self manage your conditions and live your best bendy life. This information is for educational purposes only and is not a substitute for medical advice. 

01:29
Jennifer Milner
I'm Jennifer Milner, a former professional ballet and Broadway dancer, and I struggled my whole life with hypermobility related issues and injuries. Now I train dancers and want to make sure the next generation of hypermobile artists are better equipped to work to their fullest potential. 

01:45
Dr. Linda Bluestein
I'm Dr. Linda Bluestein and I started Bendy Bodies as my second podcast to educate the hypermobile community. Despite being a physician, I experienced decades of symptoms before being finally diagnosed with hypermobile Eds, and I, too have been gaslit and felt completely alone in my journey. 

02:03
Jennifer Milner
Our guest today is Kia Steele, founder of Hell's Bells and Mast Cells and co founder of the online course Maximizing your medical appointments. Hello, Kia, and welcome to Bendy Bodies. 

02:15
Keeya Steel
Hello. Thanks for having me. 

02:17
Dr. Linda Bluestein
We're so happy you're here. 

02:20
Jennifer Milner
Yes, we are. So tell us a little bit about yourself, what it is that you do right now. 

02:26
Keeya Steel
Yeah, so I start the story. When I was 29, I developed very severe health issues. I had been struggling with IBS and food intolerances throughout my 20s, but when I turned 29, I developed really bad hip inflammation to the point that I was struggling to walk and I needed to get disability parking. And from there, my health just kind of started falling apart. And within a year, I was diagnosed with mass cell activation syndrome. This was in 2015, when it was quite rare for doctors to hear about Mass Cell Activation Syndrome. But luckily, I was on the same campus as a world renowned specialist and I was diagnosed. But looking back, of course, I've had symptoms of Mast Cell Activation Syndrome my entire life, starting from the day I was born anemia. I was born with Strep, and then I was diagnosed with HEDs and Dysadinomia. 

03:31
Keeya Steel
Several years after my mast cell activation syndrome diagnosis. But remember at the time in 2015, that trifecta wasn't as well known. Like mast cell activation syndrome was not on the Internet in 2015. And again, the symptoms are the signs of hypermobility and Eds. I was referred to an orthopedist when I was three, so getting those treatments has helped me a lot. It was a five year journey of trying different medications. With Mast Cell Activation Syndrome, you have to meticulously, try different treatments slowly, methodically. And I had a lot of relief at first, and then I plateaued for about a couple of years and then kind of out of nowhere, I tried a new medication in 2021 and it put me into remission from my Mast Cell Activation Syndrome symptoms. And so I had very severe mast cell disease symptoms. So we're talking about not being able to have my family over for birthdays and Christmas because the scents trigger such severe reactions where I'd be sick for like two days. 

04:48
Keeya Steel
So it wasn't even worth celebrating my birthday with my family. I was limited to about 15 foods and yet my intestines were still inflamed, they were bleeding at the time, and joint pain, trouble sleeping. I had very severe mast cell disease. I started this treatment, I'm still taking that treatment and those symptoms are gone. I can eat what I want. I began doing what I call adventures and trying new things. And I learned to surf, I started traveling. And lately I have been really into figure skating. It was a dream of mine as a child, when I was twelve. I wanted to be a competitive figure skater, but as you may guess, the hypermobility, the HEDs caused me a lot of issues, not to mention the Dysautinomia. So what was happening to me at the time as a child was that my joints and my feet were subluxing. 

05:52
Keeya Steel
And also I couldn't feel my feet because I didn't have correct circulation. And unfortunately at the time there wasn't enough knowledge. And they said, well, maybe it's a stress fracture. And then it eventually just kind of devolved to saying, well, maybe she's faking it, maybe she doesn't care about the support as much. And that was extremely hard for me. And it's funny, because when I went into remission, I wanted to try figure skating. And no one had heard of this dream because I had stuffed it so deep inside of me, because I was so ashamed of what I experienced as a child and not knowing that I could have received help for my body to help me skate. 

06:39
Jennifer Milner
Wow, that is definitely something that I'm sure has shaped your life. And I love that we're having this conversation with you. A lot of times we speak with people who are high end elite athletes and they talk about what they had to overcome and when they got their diagnosis and how crucial it was at that point to be getting the support they needed sort of from a young age. And it's really interesting to speak with someone who was kind of emotionally and mentally wanting to be one of those people, wanting to be one of those elite athletes and encountered the same issues but didn't find the support that was needed. And it's really powerful, and I think will resonate with a lot of people listening to hear about how it sort of emotionally shaped the rest of your life or at least the rest of your youth. 

07:27
Keeya Steel
Right. 

07:28
Jennifer Milner
And it's really inspiring that you found yourself in remission and found yourself in a healthy place where you can go out there and do something that you always wanted to do and that you're pursuing it absolutely for yourself. And how heartbreaking that it's a dream that nobody else knew that you had because you had kind of folded it up and tucked it away just because of the response that you were having. So it just shows how important it is to have that early intervention. So this whole thing has happened up until age 29. You started to figure out what was going on with your health, and you started to get control of it, and you went into remission. And what we want to talk about today is sort of the advocacy side of it, learning about yourself and being able to speak up and being able to live with disabilities like this. 

08:15
Jennifer Milner
Somewhere along the way, you started social media and sort of put out there on social media, hey, this is my struggle, and this is who I am. What made you want to turn to social media during your health journey? 

08:29
Keeya Steel
I had also always had a dream of writing, and I had a life threatening experience in 2016 where I needed an ambulance for a mass cell reaction, and I was in the er. Room, and they didn't know if I was going to make it, and I was hooked up to the IV, hoping the medications would kick in. And so I really had that life and death moment where I was like, oh, I haven't done the thing. I haven't done the thing that I'm called to do, and I can write. My disabilities don't prevent me from writing. I might have to do it at a slower pace, but I can still pursue that dream. And so I started writing my story, and it was really sad, and it was really just woe is me venting. And I realized that was not resonating with it wasn't cheering anyone up. 

09:27
Keeya Steel
No one was motivated to read. I had, like, the three family members that were like, okay, keep hanging in there. And it wasn't giving me any motivation either. And so I started reading humor writers to cheer me up as I was sick, and I saw how you can connect with people through humor, and I realized that by giving them something, giving other people something, to laugh about, we would actually build connection. And then it would serve me because I would build that muscle of learning to look for humor in other experiences. And it's really helped me to build a community. I know so many people say terrible things about social media, but it's allowed me to connect with other people in similar experiences and laugh together. And so while I'm creating content consistently and putting it out there have been so many times when I've been in terrible situations where I'm not receiving enough health care or I don't have the support I need. 

10:34
Keeya Steel
And my community has stepped in and with a joke and with that same kind of levity and reminded me of who I am. And it's been wonderful. I mean, it's so hard when you're in so much pain to connect with other people. And the instinct is to isolate, especially with mast cell activation syndrome, where you're literally allergic to other people. But when you make an effort to laugh with someone else and connect with them where they're at, it will help you too, in the long run. 

11:14
Dr. Linda Bluestein
That makes sense. And we know that mast cell activation disorders are definitely on a very large spectrum. And it sounds like you were really on the severe end of that spectrum, like really severe end, being allergic, reacting to members of your own family. And I've definitely had patients like that where they can eat three foods and they're just extremely limited in who they can be around and that kind of thing. And it can be so hard to advocate when you're so disabled and you're feeling so crummy. And I know that's something that you've been really great about in your blogs and in your social media, and you're a great advocate for yourself and for other people. What advice do you have for someone that's struggling with accommodations? And are there certain accommodations that you've found with your audience, your readers and listeners that you think are most important? 

12:08
Keeya Steel
So what I would say now from my experience being in Remission, having had many disability accommodations, which included again, disability parking because I had trouble walking, I used elevators because I could not do stairs for five years, I had a separate office. A lot of these were about working because I would have lost my job and then inevitably my home and my health insurance if I had not asked for disability accommodations. So we're talking about my survival. And what I would say in Remission is if I had not done this, I would not be a competitive figure skater today if I had not taken those steps to advocate for my body. Even though at the time I questioned what I needed and it felt very hard to ask for those things. And with the pandemic, I was dissuaded from asking to work from home. A lot of workplaces did not embrace that and thought that for some reason I wanted some perk to be home alone and not talk to anyone. 

13:23
Keeya Steel
And now they understand that there's no secret. And also, I'm just a stronger work when my health is supported. I am a stronger, very efficient worker. So some day to day I would be like, should I put up that disability hang tag in my car? Do I really need to park in that spot? And as a person in remission now, do what you need. Do not hesitate to support your body. You're not doing yourself any favors by toughening it out. And I understand it can be hard to explain that to other people, but there is a disability community that will support you and will have your back and congratulate you for advocating for your body. 

14:14
Jennifer Milner
I think unfortunately, too, accommodations have become somewhat perhaps not political, but, you know, there have been so many discussions up. I work a lot with people with neurodivergency, and I think it's a sunflower. Put a sunflower in your window to let people I think that's in the UK, to let people know that you're neurodivergent may need extra help if the police pull you over, for example. And then people are like, don't put up a sunflower, because people are just starting to use that as an excuse. So people talk about, how much should I talk about my disability? How much should I try to use my accommodations? And I am certainly not as experienced in this as you are, but it. 

14:55
Keeya Steel
Would seem to me that it would. 

14:58
Jennifer Milner
Be beneficial to ask for more than you think that you need and try to cover all of your bases. And it's what I see my dancers do in school when they have to get accommodations. Ask for more time on a test, even if you don't think you would need it, because at some point you might realize, oh, yeah, my anxiety is kicking in. I should have more time on the test. So ask for anything that you think you might need, and then whether you. 

15:22
Keeya Steel
Use it or not is up to. 

15:24
Jennifer Milner
You and your needs. But I have this sense that people go into it going, oh, I feel bad asking for this, so I'll just ask for this instead. Do you see that? Is that common for people to be like, oh, I don't want to ask for too much. 

15:36
Keeya Steel
So I can relate that as to my experience. Now going into remission and continuing on as a figure skater. So I'm in remission. And actually I was really worried about HEDs as a figure skater. I mean, I was literally flailing my body on the ice. I did not choose this strategically, but this is what the love I have of ice skating. So I thought, oh, I'm going to have all these issues with my joints. And what actually came of it is that I have adrenal insufficiency. I don't know if it was directly related to mast cell disease that my mast cells affected my Adrenals or due to long term steroid use. But basically my Adrenals no longer make enough cortisol for me to function, and so I need to take steroids. The difficulty is that exercise reduces your cortisol. So it's a constant. And all of a sudden, I love athletics and that's all I want to do. 

16:39
Keeya Steel
It's really like, I did not choose any of this situation, but I compare it to diabetes, where you're just trying to figure out how to manage your levels, because if my cortisol gets too low, I can go into Adrenal crisis. And it is a life threatening situation. And unfortunately, I've had that experience. So I went into remission. I start working with a coach, I start training in groups, and I decide I'm not going. Although under the Ada definition, I am still considered disabled because I had this condition. I'm sorry, I can't think of the exact wording, but there are protections so that if you go into remission and you come out of remission, employers and other businesses can't just take those protections away. So, for example, I had a service dog. It would be bad for us to just stop working with our service dogs and lose that training if our condition could cause us to have disabilities again. 

17:52
Keeya Steel
I decided I'm not going to use that term publicly anymore because I'm skating, I'm doing the thing. Of course I'm learning. But then this Adrenal insufficiency started affecting me and it affects my muscle strength, and I was being told I wasn't trying hard enough. And the scary thing is, when your muscles are not strong enough to support your joints and you continue to push, bad things happen to your joints. And I tore my perineal tendon, and it was an eye opening moment that I will continue to have to advocate for my body. Just because I have the mass cell disease and the hypermobility under control, I still have to talk about my body. And I started referring to myself on social media as a disabled skater because it was a friendly community that I had created. And lo and behold, all of a sudden, other disabled skaters started reaching out to me. 

18:56
Keeya Steel
And all of a sudden I had other ideas about how to modify my skating and work with coaches to help support my Adrenal insufficiency, talk about my disabilities on ice skating, and just general encouragement. So identifying as disabled can have a lot of legal benefits and protect your job and employment and give you access to public places. But it also has a wonderful benefit of having community and access to a lot of resources and helping to connect with other people who have been down similar paths. 

19:39
Jennifer Milner
That's probably really helpful for a lot of people to hear that. I assume it would be scary to identify as disabled and to speak publicly about it. But also, as you said, there's a community out there for you, there's that support and there's that warmth. Was it difficult for you? So you've talked about the legal side of identifying as disabled through your health journey, like starting around age 29. Did you go through that sense of that sort of identity crisis of, I just have this thing I need to deal with. I just have this next thing I need to deal with. Oh, no, wait, I have a chronic illness. Oh, no, wait, I have a disability, I'm disabled. Did you go through that? And if you did, would you talk. 

20:17
Keeya Steel
About that a little? Absolutely. I had a rheumatologist at the time, so I was having trouble using my hips and walking and getting MRIs and nothing was showing up because it was masso induced inflammation. And I had a rheumatologist that said, take two weeks of FMLA and then come back. And what it came down to was, like, I had to budget my sick time to keep my job. I don't think people understood I budgeted my sick time more than I budgeted in my checkbook, because if I lost my job, there goes my checkbook. And so I think that helped me understand the long game of chronic illness and not be in denial that there was going to be a magic pill. However, when I was diagnosed with mast cell disease, I thought, hey, we'll try some medication for six months and then I'll feel better and I'll get back to doing some things. 

21:26
Keeya Steel
But, yeah, with these complex diseases, again, like with mass cell going into remission and thinking, hey, maybe this is it, maybe this can be the rest of my life, I still have permanent damage from those conditions and I still will have to manage those conditions. I mean, I could get a virus and that could affect my immune system. So our bodies are dynamic, complex organisms and unfortunately, they require constant effort, and. 

22:03
Dr. Linda Bluestein
That'S true for anybody, right, that we didn't know before, COVID we definitely know now the huge impact that we're getting. So many more people with long COVID and side effects from these viruses, which we know definitely have impacted people before, more people with Dysautenomia definitely had that onset following a virus than a lot of people I think are aware of. You've been very passionate about helping people with complex illness, and a while back, you had the terrific idea of creating an online course, pivoting a little bit creating an online course to help people with complex illness get more out of their medical appointments. 

22:43
Keeya Steel
And you invited me to be a. 

22:44
Dr. Linda Bluestein
Part of that project, which I was very grateful, and we had a lot of fun, of course, recording that course, and a lot of people have really found it very helpful. Can you talk a little bit about what inspired you to do that project and what kind of feedback you've received from it? 

22:58
Keeya Steel
Absolutely. I grew up going to a lot of health appointments. My mom was a nurse who helped me navigate. But again, when I hit 29 and I started going to all the different specialists and trying to figure out how I was going to do it financially. And I had the experience where several healthcare systems in Minnesota stopped taking mass cell disease patients. And so not only was I having struggling to educate doctors about mass cell disease because there wasn't a lot of information about it, there was actually policies being put in place to prevent me from getting medical care. And so I wasn't familiar with private practices at the time and so I had to learn about that. And why were these policies getting put in place? And it was incredibly frustrating because there were hundreds, thousands of patients diagnosed in Minnesota that needed help. 

24:08
Keeya Steel
I mean, the desperation of severe mass cell disease is very real. And it was like, I'm going to lose my job in my home. And then what? We know if you don't get on top of the symptoms and start to treat it, you can develop more complications that make it harder to treat. Like if your digestive tract gets like it starts bleeding and stuff, then you're in big trouble. So I wanted to take what I had learned connecting with other doctors and help educate patients, because no one teaches patients how to advocate for themselves. But unfortunately, I know a lot of patients don't want to accept this, but we have to advocate for ourselves. It is our job to learn about our bodies and to be part of the doctor patient relationship. Unfortunately, a doctor is not going to be able to just show up and single handedly help us without our participation. 

25:11
Keeya Steel
And I know as someone who has had brain fog in an office and wanted to lay down on the floor and go to sleep and not wake up again, I understand how incredibly challenging that can be. And so the idea was, first of all, to have a conversation that's a really real experience. And how can we equip you with the information to connect with your doctor and understand what they're going through so that maybe you're not as resentful about the insurance industry? I mean, how the insurance industry is affecting their practice and how you can take very small steps to better be able to advocate for yourself when your body is screaming and does not want to participate in your appointment. 

26:04
Dr. Linda Bluestein
That is really helpful because I think a lot of people, they're so frustrated that their doctors don't really understand much about these conditions. Ehlers, Danlow syndromes, mass cell activation disorders, dysautinomia like all three of those conditions in the Triad. And of course, we can talk about the pentad or the quadratad wherever we're up to these days. But if we just talk about the Triad, even though things are much better than they used to be, there's still a lack of information and the frustrating thing is there is low hanging fruit out there. There are things that people can do which of course inspires Jennifer and I to talk to people and bring that information in a accessible way, right? This is free. This podcast is free to listeners, but then also for people to have that information so that when they're in their one one sessions with their doctors, that they can better connect with their doctor and be able to get more out of those appointments. 

27:01
Dr. Linda Bluestein
Do you have any specific tips that you could offer to people who are struggling to get that kind of care that they need? 

27:08
Keeya Steel
I mean, the first tip is to not walk in with resentment, which I know can be really hard. But learning about why medical appointments are so short and why there are insurance restrictions. I have one neurologist who hates doing prior authorizations because they take so much time. Going in with that knowledge is really helpful because then I can meet her where she is going back to talking about when I was writing my blog and it was really sad and no one wanted to read it. And then I added a little humor and all of a sudden people want to read it and they're excited about that. You want to connect with your doctor also. And I know it takes energy, but if you build that relationship and start connecting on a human level, you're going to have a better outcome and they're going to take more time to think about. 

28:05
Keeya Steel
They're going to remember you. They're going to say, hey, you really are here and you want to problem solve and actively participate in getting better. And that's really important. 

28:21
Dr. Linda Bluestein
And I was chuckling when you said that you have a neurologist who hates prior auths. Because I am in an international group of people and I will tell you 100 out of 100 of us. So there's like 300 of us now in the group. But this is something that we talk about all the time, because really what a prior authorization means is that an insurance company has said, no, I will not do the MRI, the CT scan. I will not allow your patient to get this medication until you the physician or the nurse practitioner, whoever it is that you're seeing, until they fill out a bunch of extra paperwork. Hold on the phone. Wait to get through for a peer to peer consultation and then you have to sit there on the phone and go through the whole story until they finally cave in and say, okay, well but it's a very time intensive process. 

29:13
Dr. Linda Bluestein
It's a very administratively heavy process. And I think it is important for patients to be aware of those kinds of things that unfortunately do influence care and cause a lot of frustration for a lot of clinicians. Because if we order something, we're ordering it because we feel it's necessary and then to have the insurance company, they have the power of saying no, you have to do all these extra things to prove it. It is very frustrating. 

29:41
Keeya Steel
I think, again, we talk about doctors being human beings and every human being has strengths and weaknesses and pet peeves. And so if you are able to identify those in your doctor, you're going to have a better chance at working with them instead of trying to go at them for the same thing that they don't want to do or they feel that they medically cannot help you with. Try to find a way for them to help you either in a different way or a different route or refer you. It's a lot about, again, problem solving and working together to find the next step to help you. 

30:27
Jennifer Milner
That is really great advice and it is wonderful to hear from the patient side. 

30:33
Keeya Steel
Right. 

30:33
Jennifer Milner
Because we so often talk of people who are frustrated with the healthcare system and it can very often seem like we are kind of getting onto the medical professionals when we know that it's the system and the system itself kind of puts these obstacles into our way. And it's great to hear you say we as patients also need to take ownership and have a responsibility to be part of this relationship as well and not just walk in as a consumer, but to walk in prepared, to walk in trying to work with the doctor and with their strengths. So if we're doing all of this and we have done what we can, we've tried to find their lane and tried to work with them in that and find what's next and it still feels like it's not working. Is there a point at which you would say, maybe it's time to seek out another professional and how can someone identify that point? 

31:22
Keeya Steel
So I recently had this experience with Adrenal insufficiency. I have a new endocrinologist. I don't know anything about Adrenal insufficiency. I'm learning as I go. And also this endocrinologist has not worked with someone with Adrenal insufficiency who does athletics. Generally, people with Adrenal insufficiency don't do a lot of activity. So I had a very terrible summer where I struggled with low cortisol and I went into Adrenal crisis twice and it was incredibly scary. I'd rather do the tilt table and then have anaphylaxis than go into Adrenal crisis just to set the record straight about how scary it is. And it really affects your body. Like, hair falls out, all sorts of things, affects your organs. Terrible, terrible. And I had gone to this endocrinologist and explained that I was struggling with my cortisol levels because of figure skating and that I needed help and possibly a larger dose. 

32:38
Keeya Steel
And the endocrinologist kind of blew me off and was like, no exercise can't it's figure skating. It's not that big of a deal. We want you to taper because ideally you want to taper to the lowest. Dose possible because steroids have bad long term consequences if your dose is too high for your body. Terrible summer. And I ended up tearing my perineal tendon, I believe, due to poor technique and really weak muscles at a particular day where I was going into crisis. I wanted to never talk to this endocrinologist again. And I was so mad because I had been having such a great time in remission and having all these activities and enjoying myself. But I remembered that in the course we talk about, when you have these miscommunications or the doctor recommends something that ends up going really horribly wrong, it's really important to follow up and communicate with them and make sure they know what happens even if you continue to not work with them. 

33:56
Keeya Steel
So I went in there to the appointment. I was a little resentful, to be honest, but I didn't let it affect. 

34:04
Jennifer Milner
You weren't following your words. 

34:06
Keeya Steel
Yeah, I didn't let it affect my words. And I told her what happened and how terrible my summer was. I basically was, like, sleeping all the time, and it affected my personal relationships, and I was ready to say, this isn't working out. Can you refer me to a different endocrinologist or something like that? And I just said, what happened? What do I need to do as a patient to communicate my needs as an athlete with adrenal insufficiency? And she said, I am sorry. I didn't understand that you became a Minnesota state champion and weren't just skating in circles around the rink in a class. She didn't understand that I was doing toe loops and slamming my body on the ice and getting bruises. I thought I had communicated that. I believe I tried very hard, and it's just hard to explain to people that you're an adult figure skater. 

35:11
Keeya Steel
But then she went on to say that she talked to all of her colleagues at the university about having adrenal insufficiency as an athlete and researched different protocols and showed me that, one, she was sorry, and two, that she was going to try to help me. If she hadn't done that would have been the end of the appointment, and I would have found a different endocrinologist. And it's terrible that we have to go through these sometimes life threatening situations because our doctors don't understand or don't take us seriously. But it wouldn't be to my benefit to just never talk to her again because I have to have an endocrinologist. I rely on doctors to survive, so she might not have the expertise to help me right away, but she's willing to go out and find it and to work with me, and she is listening harder to what I say in the appointments and understanding that figure skating is really affecting my body. 

36:22
Dr. Linda Bluestein
Wow, there's so much in there to unpack. One thing I want to mention really quick first, is that a point that you made about that you need to have an endocrinologist as part of your team. Something that a lot of people might not be aware of is a lot of practices will not let you switch from one person within that subgroup to another person. So you do need to be very thoughtful about that because you may need to switch to a whole different practice rather than just, oh well, the group has five doctors. I saw the first one, now I'm going to see the second one and now I'm going to see the third one. There are reasons why they do that, but most groups, or many groups, probably the majority, do have that rule because they don't want people just bouncing around and that's not good care. 

37:10
Dr. Linda Bluestein
We want good continuity of care. So that's something that I think a lot of people wouldn't be aware of. So it's really great that you really tried to overcome these hurdles with her, number one, because that could be really limiting if now you have to go to a whole different practice and then maybe their electronic medical record system isn't as integrated as the one that you were in. And then the other point that I wanted to raise as you were talking about the steroids, I was also just kind of thinking of a couple of patients of mine who also have endocrinologists on their team and always are struggling with the dosing of their steroids and basically are wanting more steroids from their doctor, and their doctor is not wanting to give it to them. But boy, talk about stuck between a rock and a hard place because we know that steroids do have detrimental side effects. 

37:57
Dr. Linda Bluestein
One of them you mentioned shutting off your adrenal glands which are, by the way, for people who don't know what those are. Those are glands that sit on top of your kidneys and they produce critically important chemicals and hormones for your body, as Kia's talking about. So if you shut those down, that's really bad. And then of course, steroids affect your bone density and can make your tissues weaker and things like that. So it's really kind of stuck between a rock and a hard place when the clinician's trying to dose your steroids. Because what happens if your adrenal glands are functioning well then when your body's under more stress they make more steroids and when your body's under less stress they don't need to make as much. But if your adrenal glands don't work well, then usually you have a consistent dose of steroids and when you need more, you normally can't compensate for that. 

38:46
Dr. Linda Bluestein
So that's really challenging and I can see where that's a hard conversation to have. And what's the luster of the evils, basically that your doctor and you are trying to decide. 

38:57
Keeya Steel
Going back to the course, another thing we cover is about how to provide records and symptoms, lists of symptoms for your doctor. And that was such a key part of talking with this endocrinologist is that I had a spreadsheet of the doses of steroids I took every day and the rescue dose that I needed to take for crises along with the symptoms. And that just created so much credibility for me. And she could see that I also logged my exercise so that you could not only gave credibility for me in the appointment, but helped me to understand my body and anticipate what symptoms I would experience with which doses. 

39:46
Dr. Linda Bluestein
And that really helped her, I'm sure, to feel more comfortable saying, okay, because again, there's a new drug that I just came across that I'm like, okay, do I want to prescribe this to people? And I'm looking at all the side effects and I'm like, oh, man, this is scary. But you always have to weigh the risks and the benefits. Going back to the very beginning of this conversation when you were talking about trial and error and how a lot of people think that we have a magic crystal ball and we can absolutely project everything into the future and know what's going to happen. No, we don't. I mean, we have lots of evidence, I should say, but you providing your own personal evidence like that in that spreadsheet and being really organized and prepared can make it a lot easier for that clinician to say, oh, okay, it looks like this is clearly what is appropriate, this is what worked. 

40:38
Dr. Linda Bluestein
And then we're much more comfortable prescribing in that way because there's that evidence. 

40:47
Jennifer Milner
I think that makes a huge difference, and I think our listeners hear consistently when we talk about be prepared, try to have your information together. Try to go in there as you talk about Dr. Bluestein with the one know, what can we do to make it easier for them to kind of figure it out and understand you and get to know you in these really complex and difficult problems? Kia, you have had quite a struggle with your life, and I really appreciate that you have chosen to share it with so many people and to be able to talk about it and let us learn through observing you and laugh with you as well as we go along with it. You covered so many topics today. Was there anything that we didn't talk about that you wanted to make sure that we discussed? 

41:35
Keeya Steel
I just want people to be more open to hope and future joy. I didn't know adult figure skating was a possibility, and it is bringing so much joy to my life, and I am able to move my body in ways I never imagined, and I hope that people won't give up completely on their dreams. The timeline may be different, the venue may be different, but we're learning more about these conditions, but also we're more open to pursuing joy in different ways. And I am just so excited to see where I go as a figure skater. 

42:24
Jennifer Milner
I think a lot of other people are really excited to see where you go as a figure skater and to continue watching your journey as well. So, speaking of being able to watch your journey and be with you on it, where can people find you? 

42:37
Keeya Steel
Yes, you can find me falling on my butt. On Instagram, I just learned how to mic up my skating. So because I lived in solitary confinement for five years, I'm a very vocal figure skater. So Instagram is great for my figure skating. Hellsbellsandmasssells.com is my website. Hellsbellsandmassels on Facebook? Yeah. Come laugh with me. 

43:09
Jennifer Milner
Well, we appreciate that so much, and we are really grateful for you being with us today. You have been listening to Bendy Bodies with the Hypermobility MD, and our guest today was Kia Steele. Kia, thank you so much for being with us today and sharing your journey. 

43:23
Keeya Steel
Thank you. It was great. 

43:25
Dr. Linda Bluestein
Yeah, we loved having you. 

43:27
Jennifer Milner
If you love what you learned, follow the Bendy Bodies podcast. To avoid missing future episodes. Screenshot this episode. Tagging us in your story so we can connect. Our website is WW bendybodies.org and follow us on Instagram at bendybodies. We love seeing your posts and stories, so please tag using hashtag bendybodies. Please leave a review and share the podcast to help us spread the word about hypermobility and associated conditions. This information is not intended to diagnose, treat, cure, or prevent any disease. The information shared is for educational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please refer to your low qualified health practitioner for all medical concerns. We will catch you next time on the Bendy Bodies podcast.