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Episode 85: Ronna Boles - Scleroderma
38 Plays9 days ago
Ronna lives with diffuse systemic scleroderma, a rare and complex autoimmune condition that affects the skin and vital organs like the lungs, heart, and digestive system. What began as years of unexplained symptoms evolved into a life-altering diagnosis, bringing shock, fear, and uncertainty, especially as a young mother.
Ronna speaks candidly about the emotional weight of diagnosis, the reality of living with fatigue and invisible illness, and the difficult balance between protecting her health and continuing to participate in life. Her story highlights the importance of self-advocacy, mental health support, and the power of community, particularly through social media and patient groups.
Despite the challenges, there is resilience at the heart of Ronna’s journey. From signing up for a race she once feared, to redefining what participation in life looks like, she demonstrates a powerful determination to keep moving forward – not just for herself, but for her family. Her story is a reminder that chronic illness is often unseen, but never unfelt, and that empathy and understanding can make a profound difference.
The song Ronna chose is I Wanna Dance With Somebody by Whitney Houston.
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Transcript
Introduction: Sylvain Bertolo and Rona Bowles
00:00:00
Speaker
Hi, I'm Sylvain Bertolo and you're listening to On One Condition, a podcast to raise awareness awareness about health conditions by listening to people who live them every day. My guest today is Rona Bowles and we're going to talk about diffuse systemic scleroderma.
00:00:15
Speaker
Hi Rona, how are you doing? I'm doing well, how are you Sylvain? I'm great. Thank you. Thanks for joining me on the podcast. It's a pleasure to have you on. As you know, and our listeners know, I love starting with a song. So which song did you choose and why? Well, you gave me the option of a song that I like to dance to also. So one favorite songs is actually ah Whitney Houston, I Want to Dance with Somebody.
00:00:44
Speaker
Okay. always makes me laugh and move and i enjoy that. And my kids like it and my husband. So it's one of my favorites. Nice. i like that.
00:00:56
Speaker
It's good to dance. Yeah. so It's a good way of letting loose a bit. like that.
Rona's Diagnosis Journey
00:01:02
Speaker
agree I don't know where to start. So I will i will ask you to to take the lead if you don't mind and tell us where scleroderma entered your life.
00:01:17
Speaker
Well, it's it is a complicated disease. I haven't really pinpointed exactly when I think it started, but I have diffused systemic sclerosis or scleroderma, which was finally discovered in December of 2022.
00:01:34
Speaker
So i had had years of issues and nothing made sense as far as all the puzzle pieces. When I finally kind of had a breakdown with a doctor and said, i i don't know what to do. I don't know why I'm in pain all the time. And I had been prescribed um a lot of different medications to help or a bandaid or been told, well, that's normal. And I thought this doesn't feel normal.
00:02:01
Speaker
Finally, a neurologist gave me a blood test and it included an autoimmune blood test. And so, flare derma became something that came up in it. And i remember getting the results on my phone and the app. and it was many more blood tests than had been originally ordered. And I thought, this is strange.
00:02:27
Speaker
Eventually, he called, which when a doctor calls, we know that that's never good. yeah And so he said, i i need you to go see a rheumatologist. And I said, okay.
00:02:37
Speaker
So again, more blood tests, which gave us the correct answer, which was scleroderma.
Impact of Scleroderma on Organs
00:02:44
Speaker
And If you don't know or you're hearing words that maybe you understand that you can translate your mind, it means hardening of the skin. And so there's limited and there's diffuse. And I have diffuse, which I found out is the rarer of the rare form of disease.
00:03:02
Speaker
I tested positive for the SCL70 gene, which means the likelihood of my organs being involved was very significant and high, which created a situation where I needed to very rapidly have more testing, which wasn't just blood tests because my kidneys and my liver came back as doing fine, but they needed to check my heart because pulmonary hypertension is a concern and the lungs are a concern. And so i did pulmonary function testing very rapidly. i did high resolution CT very rapidly and I had an echocardiogram.
00:03:45
Speaker
And so the echo was good. i live Estes Park, Colorado at almost 8,000 feet. And so to me, I thought everybody has difficulty living up here.
00:03:58
Speaker
I mean, ah and honestly, like people move because they had to struggle with the altitude or people come here and they have to leave because of altitude sickness on vacation. And so it's very common to hear about people struggling at altitude.
00:04:12
Speaker
So nothing was found until the high resolution CT results came back. And it said that there was brown glassing, which has been explained to me as if you were to put your lungs over a newspaper, it would be like translucent, you couldn't look through it.
00:04:32
Speaker
so your lungs have these really thin walls and air sacs that take the oxygen in your that you breathe in and then they diffuse it out into your bloodstream. But there's a thickening involved, which scleroderma at its core is an overproduction of collagen.
00:04:50
Speaker
So when you're concerned, you're concerned about your body essentially hardening in every aspect. Okay. So and I was about to ask, what's the link between the name scleroderma, which you said is skin hardening, and your organs, but it's not just your skin, it's the the layers of your organs
Emotional Coping and Support Systems
00:05:15
Speaker
as well. Is that right?
00:05:16
Speaker
Yeah. so you can have renal failure with your kidneys because of it, and you can have liver failure, lung failure,
00:05:27
Speaker
heart failure. And also people who have skin involvement, your skin can become so tight that you can't move your hands. Oftentimes people on their face and their foreheads will have very smooth looking skin, but it's actually very tight and and shiny maybe to to look at, but it's it's quite uncomfortable.
00:05:47
Speaker
When those things are happening, your skin can be very itchy and There's things that are kind of happening and that you can't control and your muscles can kind of freeze and your GI can also be involved. um I forgot to mention that. And so I've actually had my esophagus stretched twice because I had a hard time swallowing my medication. It was getting stuck and it was really painful.
00:06:10
Speaker
And then your GI can just be very slow. and so concerns can also be malnourishment. You're not getting enough of what you actually need. to function on a daily basis.
00:06:23
Speaker
And that's on top of fatigue and exhaustion and many different ologists is what I say. I have a group of too many ologists that I see. Yeah. yeah That sounds much more involved than what I thought when you first explained it. Yeah.
00:06:39
Speaker
So you explained how you discovered that you have scleroderma. What was your initial reaction when you started taking it all in?
00:06:50
Speaker
There was shock and and also confusion. It wasn't a disease I had ever heard of. And for some reason, my brain just thought, well, if I've never heard of it, if it's that important enough that I've never heard of it, then it must not be that big of a deal. Mm-hmm.
00:07:07
Speaker
But if you go online, which I was warned not to do, but I don't listen very well, you'll see that the survival rates are considered to only be five to eight years from diagnosis for scleroderma.
00:07:21
Speaker
And that pulmonary fibrosis or the lung involvement is three to five. But as a friend recently posted online, she said, we don't listen to those statistics and we keep moving forward. So yeah.
00:07:34
Speaker
But initially, it's very scary. And it's concerning as a mom. I have at the time, my kids were only six and eight years old. And i was 35 years old. I'm 38 now.
00:07:47
Speaker
Married, small business, live in a small town. like I'm not ready to be in my twilight. I'm I mean, at that age, at 35, you're not thinking i was middle-aged at 17. Yeah. there's a lot of overwhelming, like, what does this mean?
00:08:06
Speaker
What do I do? was very, very upsetting to me on the whole, then trying to keep it together for my kids and not scare them too much. and Yeah. But to be honest with them, and it was not a fun time that first year or two.
00:08:19
Speaker
I can't imagine. So what have you decided to do then?
Holistic Management of Scleroderma
00:08:23
Speaker
Because I can imagine that you can decide to to take it by its horn and and fight it as much as you can, or you can be devastated and it can be difficult to get out of this state.
00:08:38
Speaker
Yeah. I would say mental health was a big thing for me. I very rapidly got in with a mental health therapist, which I'm very grateful for. She was excellent and understanding and let me cry. Let me yell and swear and Asked why and and then also through being on the internet, did more research and thought, well, what what can I do? What am I allowed to do?
00:09:04
Speaker
i was still exercising. i was still trying to be active and go to my kids' school events or sports. And so I said, I want to continue to be able to do that.
00:09:16
Speaker
I started having warnings from my doctors saying, we don't know how long you can live at 8,000 feet of elevation. And I said, what does that mean? And they said, you could progress very rapidly or we could hopefully stop it for a while and get you on medication and try other things. But we just don't know.
00:09:37
Speaker
I had not realized until maybe a few more months into diagnosis, talking to my doctors when they said, we didn't have medication for this 15 years ago. And I thought, I'm shocked that and the 21st century, sometimes we don't even have treatments for these things.
00:09:55
Speaker
But in a doctor's appointment, I said, I want to approach this holistically. And she gave me a funny look. I said, no, no, I want to take the medication. i want to exercise. i want to change my diet.
00:10:09
Speaker
And i I need your support and help in that. Like, can you do that? and she said, yes, I support that 100%. We want you to live your life. This isn't a death sentence, which when she told me that in the office, I cried. And i thinking about that moment of, we just don't know.
00:10:29
Speaker
it's It's very overwhelming to yeah to say, i I want to try, but I don't even know if I'm going to be successful. So I started to continue to run.
00:10:39
Speaker
i ride a stationary bike a lot because it just feels safer to be at home sometimes. But the medication is immune suppression. It's heavy immune suppression. And so it's this ascent to, i have kids. I said that to my pulmonologist. I said, what do I do? I have little kids at home. They're disgusting.
00:11:00
Speaker
it bring home everything from school. and you know controlling that environment is... I wanted to control it, but also realizing I have zero control in all of this. And so what do I do? So we have hand sanitizer in the car. We have hand sanitizer in my purse. But it's still, I've gotten sick a few times since my diagnosis and being on medication. And I was terrified.
00:11:26
Speaker
It felt like I wasn't allowed to get sick, which I'm i'm not. But I didn't know that my doctors would take it so seriously with me. Once you have a diagnosis, you can go in and say, i have interstitial lung disease, i'm immune compromised, I need medication, can you help me? And they say, yes, what would you like? of You need to go home and wait it out or give it a few more days and come back if you feel worse.
00:11:54
Speaker
And so there was this empowerment also of learning to advocate for myself. Yeah, I've tried to be as active ah as possible. And there's a very active running community here in the mountains.
00:12:07
Speaker
And i heard about a race and it's called the Backyard Ultra. And it's really a race that doesn't end. You can keep running 4.2 mile laps as long as you can. People run hundreds of miles over 24, 48 hours. it's yeah I said, well, I'm not running that far, but maybe I could do one lap. And because it was the first race, they had a if you want to try it, you can sign up for one lap.
00:12:31
Speaker
So I did. and now again, I cried. And i I said, I cannot believe that it took a diagnosis of you're dying, and you don't know how long you have to make me sign up for a race that I used to be afraid of. I used to feel like I don't belong here. I shouldn't be doing this.
00:12:50
Speaker
What right do I have? But now it's like, I think everyone's making it up. and anyway Yeah. Yeah. So the treatment itself, here is it something that is for a specific organ, for example, or or is it more holistic than that?
00:13:08
Speaker
So that was a question I had also initially. And while it is specifically for my lungs, it also has been helpful for other symptoms that I have. Okay.
00:13:20
Speaker
For the first two and a half years, I was at 3,000 milligrams, which is the highest dose that you can have. It's 1,500 in the morning and 1,500 in the evening. I was stable on that. And so I was able to go down to 2,500 milligrams, kept testing, and so was able to go down to 2,000. But i within a couple weeks of medication reduction, my skin started getting really itchy and I was getting very uncomfortable. Mm-hmm.
00:13:50
Speaker
And so like my chest and my shoulders and my neck and my forehead and my hands, like, and then I was getting really sore spots in my hands, like arthritis. And I thought something's not right. And I started messaging my doctor. She said, go back up and see if that helps. And so I did. And I said, okay, it's been a few weeks. And I feel like that those symptoms have reduced.
00:14:15
Speaker
And then I had another event just a few months ago where it felt like I was i was getting a lot of tingling in my hands. It was originating in like my elbows and I would feel very tight, but also it was like a burning sensation, like my nerves.
00:14:32
Speaker
And it was really uncomfortable. i messaged again. I said, this is what I'm feeling. i'm I can't stretch it. I can't heat it. can ice it. And that seems to help, but it comes back.
00:14:45
Speaker
It's starting to keep me awake at night. ended up having a a nerve test to make sure I didn't have something pinched. which I don't, but I increase my medication again to the maximum dose and those symptoms have mostly subsided.
00:14:59
Speaker
but I still have to do blood testing to make sure that the medication isn't harming my liver or my kidneys. Okay. Yeah. And so that's the initial when you start, it's every two weeks blood tests, and then you can go out to a month.
00:15:15
Speaker
And then your you and your doctor can kind of decide from there how often you need to check in for the blood tests. There are other infusions and medications that you can try. There's concerns with the immune suppression.
00:15:29
Speaker
Mine specifically can cause issues with diarrhea, which can be difficult if you have a life that you need to be functioning in still. yeah And just uncomfortable in general. And so there's a few other medications that they can try for you. but Specifically for me, I've been on and immune suppression and there are a couple other things that they've been able to recently come out with in the past few years that help with the lungs, but they might be approved for pulmonary fibrosis, but they might not be approved for interstitial lung disease.
Family and Social Dynamics with Scleroderma
00:16:02
Speaker
And so there'll be one approval and then they're going to do more testing to see if it can also be approved for another for the disease. And so there's this slow track of there's a lot happening, but it's just not quite across the finish line yet.
00:16:17
Speaker
And ah think people don't necessarily always realize that the treatment, you've explained side effects of immunosuppression, but also everything you take is filtered by your liver and then your kidneys, and that can cause damage as well. So do you know if that's a medication you're likely to be able to stay on?
00:16:42
Speaker
Or if that's something that at some point you'll have to swap to a different one? My understanding is that I am stable on this medication and I will stay on it long term.
00:16:55
Speaker
Okay. Unless there's a clinical trial that wants me or there's something else that comes about. But I've applied for clinical trials and in interviews they've asked for me to be off of my medication.
00:17:11
Speaker
One of them asked for four months. And I said, i reduced and after two weeks, I was having concerning issues. so I'm not comfortable getting off a medication I know works for me for an experimental one. And, and different trials have different requirements as far as you would stay on it. And then we would add hours. But I think it just depends on what they want and what they're pursuing as far as their goals. But So far, I've been doing well on my medication and I'm glad to be on it. And I don't have a reason to be off of it right now.
00:17:44
Speaker
Yeah, that's interesting what you just said. So, you know, i've I've read many protocols and you read those requirements or inclusion exclusion criteria.
00:17:56
Speaker
I've never actually heard the patient side of if I reduce for two weeks, I already have very difficult symptoms to manage. So I'm not going to stop my treatment for four months, not knowing if the new treatment is going to be better.
00:18:15
Speaker
What's your thought on that? Like from a patient point of view, What would your wish or expectations be from people who write those protocols?
00:18:27
Speaker
I think that they need to understand that as humans, we've been given this diagnosis that is already very scary and concerning and we don't know and they don't know what's going to happen, but that the risk we take affects us a lot more than it affects them.
00:18:46
Speaker
And like you mentioned, if I go off my medication, I will qualify for many studies. I will start having all the symptoms that they want to treat. But if I get that bad, I'm going to be very, very uncomfortable. And it's irreversible at that point.
00:19:05
Speaker
So offering a medication that they're not sure of, while interesting, is not always something that we as patients can say, sure, test on me.
00:19:19
Speaker
I'm in a ah support group for young women with interstitial lung disease. We go by Young and Wild. There's a range of us who some people either are newly diagnosed and unsure if they even want to take the kind of ah gold standard medication.
00:19:37
Speaker
And then there's some of us who are on many different medications and some who have been in the clinical trials that have have approved those medications It's this whole range of people and within the support groups and the networks, people will say, hey, will anybody talk to this newly diagnosed patient and share your experience with the medication? Because you can read the packet and it's the scariest things you've ever read. of I think mine comes with you could have a random brain eating something happen or yeah it it's wild, like higher risk of cancers and obviously just the immune suppression. And so, yeah, it's a big deal to say, sure, I'm going to take this medication that is widely accepted already.
00:20:21
Speaker
But then to take one that is an unknown, It's just, it's hard to describe that fear and concern. Yeah. And especially if they're saying you might get a placebo.
00:20:32
Speaker
If I'm not even going to get the medication and I could be essentially suffering. Yeah. That's not something I want to sign up for. Well, it's suffering and correct me if I'm wrong, but I imagine it's time limiting for you as well.
00:20:48
Speaker
Yeah. And not just like long term time limiting, but immediate because one of my main symptoms is fatigue. I don't know if people understand that fatigue isn't just like I'm tired, I can sleep and I'm going to feel better.
00:21:02
Speaker
You go to bed tired, you wake up tired, you might not have slept very well because your body's sore and aching. but you can't stretch enough, you can't drink enough water, you can't eat enough correctly. It's just your body is fighting so much internally, that the exhaustion just wants to take over. And so there are times when I'm on the couch, and I'm exhausted, and my kids, maybe they want to play a game. And I'm like, can you bring it up here? And maybe we can play together.
00:21:34
Speaker
and it's too tiring even to get up to the table to eat a meal as a family. And so there's There's some really dark moments of your brain kind of going like, well, they better get used to that someday because I might not be there.
00:21:48
Speaker
There's that concern, but also that fight that you're reminded of sometimes of, well, I want to be there. But yeah, the the risks that are involved with a clinical trial, they need to be weighed pretty heavily if you have a disease that isn't a forgiving one.
00:22:05
Speaker
Yeah. Yeah. Yeah. I completely get that. Regarding the the immunosuppression, so obviously talked about using hand gel and so on, but is there anything else? Like how do you manage that?
00:22:21
Speaker
Can you go out at events and things like that? So initially i was very, I needed to learn my own limits. And i was wearing a mask outside, even at maybe my son's flag football games. And I realized later that wasn't for me being outside in a mask.
00:22:42
Speaker
yeah But yesterday evening, we went to my daughter's school performance and I'm wearing a mask inside. And I to the store, I'm wearing a mask inside.
00:22:54
Speaker
Basically anywhere. There's a group of people that I don't know, or I don't trust or who don't know me, I'm going to be wearing a mask. And I kind of had to mentally accept that that was going to be me.
00:23:08
Speaker
And if somebody is going to make a face or ask questions and just say, that's fine. And I'm happy to share with you what I have and why, but there's the masking, there's the just kind of caution and and deciding if the situation is for you or not.
00:23:24
Speaker
Yeah. I have ridden on airplanes and we all will wear a mask because mom is going to be around you after we've been in that exposure area. You kind of do what you can, but you know that there's a risk involved.
00:23:38
Speaker
I know some people I met a woman who has what I have and she's actually the only person I've met in person who has it also. And she she does elbow bumps. She doesn't shake hands. And that's what works for her. and yeah But you have to figure out what works for you. And I know for some people that might mean not going places or doing less. But for me, because I really decided I want to participate in life, I'm taking risks that maybe some people wouldn't. And that's okay.
00:24:09
Speaker
think I want to go back to you what you shared about like sometimes you can't eat a meal, for example, because you're fatigued. Yeah. How do you children react to that?
00:24:22
Speaker
Do they understand what's happening? Is it something that you can describe? with words to them and and they understand. Because it sounds like it's some days you're fine in a way, but other days your body is dealing with stuff and and it really is difficult to manage and you can't be as active. Yeah.
00:24:47
Speaker
I grew up in a family that hid a lot of medical diagnoses and I really didn't appreciate being blindsided by that as a kid or even young adult.
00:24:59
Speaker
And so I've tried to share with them in a kid appropriate way that mom is sick and it's not a, I'm coughing, stuck, needing medication.
00:25:12
Speaker
you know, to be in the hospital sick, but it's just a kind of a general, i need treatment long-term and it's mommy's lungs. And so they kind of said, okay, but at six and eight initially, that was very confusing. And we're we're only a couple of years out from COVID and my son was a kindergartner when COVID hit. And so they were both going to school, masking full-time and things that they kind of were already accepting of.
00:25:43
Speaker
But there was a day in the car. I'm driving them to school. And I i think I was only four or five months in from my diagnosis. And they got really quiet.
00:25:55
Speaker
and I said, what's what's going on? And they kind of whispered to each other. And I said, really, what's going on? Like, I have three minutes before I drop you off at school. And they said, are we going to get what you have?
00:26:08
Speaker
And I said, no. No, you're a not. Like, that's not. An option. That's not what I'm going to. i've I've researched some and and tried to to figure that out because I had a question too.
00:26:20
Speaker
And so within those three minutes, had to explain, you're okay. I'm asking you to wear mask sometimes because mommy's sick and it just helps me. And then we can do other things.
00:26:32
Speaker
because I'm not you know having worse symptoms maybe, but explaining that to them but also realizing like they're starting to process some of that significance was overwhelming just as a parent to say, i don't necessarily have an answer for you.
00:26:50
Speaker
But there there have been times when my husband, who's very supportive, has said, hey, like if you're going to be over by mom, like maybe you just kind of sit with her and read a book. Or if you want to cuddle,
00:27:03
Speaker
Or let me take this on instead of mom. And so I make an effort to be at games or like one one summer I coached my son's baseball team. But, you know, during the day, I'm trying to kind of save up all my energy for that evening so that I don't.
00:27:20
Speaker
come off as the the parent or the adult who's too tired to hang out with 14, 12 year old boys. Like that's exhausting on its own, but yes it's I don't know. I don't know.
00:27:33
Speaker
i can't speak for them, but I've hopefully been able to be open with them enough that they're not as afraid now or concerned, but I think that they know and are more understanding as they've gotten older, they're about to turn 10 and 12.
00:27:50
Speaker
Me wearing a mask somewhere doesn't phase them anymore. They're like, okay. And they get in the car from school. I said, okay, hand sanitizer. Okay. And so the adjustment as a family has, i i would want to say has happened at this point.
00:28:04
Speaker
But I think some of that is because I haven't had a dramatic acceleration of disease. Yeah. So mommy doesn't look sick, but she is. And so even even just that whole perception and perception change of we can be empathetic and sympathetic to people who don't look like us, but maybe they need an accommodation because they have a dynamic disability, whatever that might be.
00:28:31
Speaker
you look at people differently and hopefully with more kindness and teaching them that is, has become a big kind of sticking point for me, something I'd like to instill in them.
Managing Progressive Scleroderma
00:28:43
Speaker
Yeah, it's a it's a good appreciation to have, definitely, socially. As you were talking, i was thinking there's no there's no representation of people with hidden conditions or chronic illness. Mm-hmm.
00:29:03
Speaker
But it's so difficult to represent what it looks like because it may not look like anything unless people live with you essentially.
00:29:15
Speaker
Yeah. I was just thinking of social media. I was really nervous to start a social media account that was kind of about me, more about me, more self-centric, and thinking I was going to educate people about scleroderma when I didn't know anything about it really.
00:29:33
Speaker
And i ended up stumbling upon all of these people kind of doing the same thing, but living their lives with chronic illness, but very blatantly saying, hey, I might look okay outwardly, but I just had an eight-hour infusion and I'm exhausted. Or i just had a new test result and I'm starting a new medication. Or i'm also a parent, or I'm also trying to do these things or, hey, have you been able to get a ride figured out because I'm also wheelchair bound and maybe the the transportation systems in my city aren't working very well. And all these people raising awareness and sharing their stories was really encouraging to me.
00:30:23
Speaker
and it still is. There's people I've never met that I consider to be very close friends. And then i I did get to meet a couple Back in November at a conference, we've been in a support group together for a couple of years now.
00:30:37
Speaker
And it was just like meeting sisters. No awkwardness, no confusion. It was just, oh my gosh, that immediate understanding that we already know what we have. We know some of our limitations. You don't have to explain.
00:30:51
Speaker
and yeah, all of us can can maybe be walk or get ourselves places. But hey, do I need to slow down on the stairs? Yeah. And that's okay. Like I don't need to to explain or call out and say, hey, give me a second.
00:31:05
Speaker
And that was really, really refreshing. And I think that's what social media has given me is that community of people that they get it. And that's the one thing that is really helpful, like you said, visibility and understanding. And so I've really, really appreciated that. Yeah, a good sign of social media. Yes, will agree. There's not always yes, but they've that's been a ah bright shining star for me.
00:31:31
Speaker
You've talked about acceleration of disease. Is it a progressive disease? Yes. Yeah. The hope is that medication can slow.
00:31:45
Speaker
or stop. But I've also seen people online who have kind of a stair step effect, where you have an event like you get sick.
00:31:55
Speaker
And let's say you get pneumonia, and you never fully recover from that you get better, but you maybe not fully and then you get another event where maybe you get sickness again, or something happens. And so you can kind of stair step down And because your lungs are kind of use it or lose it once you get fibrosis or damage, you can't repair that.
00:32:19
Speaker
um It's scarring. Concerns that get brought up lung transplants and having to go on the transplant list. That can be an option for some.
00:32:31
Speaker
As I thought of that option, potentially one day, I thought, well, that will be a situational thing for me. I think I know people who have decided for and some who have decided against and yeah, It's personal. So yeah, there's there's a concern of progression, which is why I still see most of my doctors every three months. They want to check. They don't want to miss anything, especially with scleroderma, because it can kind of ramp up and decide nothing's going to stop me.
00:33:02
Speaker
that You can have some very, very bad symptoms happen to you. So it's concerning.
Conclusion: Finding Joy in Nature
00:33:09
Speaker
Okay. Well, I have one last question for you. I'm guessing the answer might be very straightforward, but I'll still ask it. What's your happy place? A place where you feel at peace?
00:33:23
Speaker
Outside.
00:33:26
Speaker
I was expecting that. yeah I'm fortunate to live next to Rocky Mountain National Park. I get to look at the mountains every day. i get to see wild animals, walk through.
00:33:39
Speaker
I've actually had to teach my kids to be more cautious of large elk or mountain lions than I have other people. And so I think that's a ah real privilege that I get to live here.
00:33:51
Speaker
and i I want to live here as long as possible. I think that means still going out and enjoying it and making sure that I can spend time here and not miss those opportunities.
00:34:02
Speaker
It sounds wonderful. And I'm going to have to Google it because um I love nature as well. And yeah, that sounds like a place I would enjoy. Yeah.
00:34:15
Speaker
ah Well, thank you so much. It's been really nice talking to you. And I can't help myself but think, well, you live in such a wonderful place. Surely it does good to you. And I know that's not necessarily what the doctors tell you, but kind of hopeful that they're wrong.
00:34:33
Speaker
Yeah. Good for the soul. Yes. Yes, definitely. Thank you. It's been a pleasure having you. Thank you.