Ron Frye Talking Sarcoidosis (Inflammation of the lungs)

In this Episode of Love your Diagnosis, I talk with Ron Frye about his diagnosis of Sarcoidosis which is a rare disease that causes inflammation to the area of the body it attacks, which happened to be his lungs. There is no known cure, and his condition is being treated like any ordinary COPD.

Ron grew up on the South Side of Chicago, and was raised in a very loving family. At the age of twelve he was introduced to the most deadliest streets in the United States, and it was not long before he completely adapted. He ended up spending the majority of the next 33 years incarcerated in various prisons, and juvenile facilities in Illinois, and Colorado. Before he went to prison his health was fine, it was the conditions and environment that potentially could have added to the inflammation.

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Lainie 0:00

Fantastic. Welcome to the lovely diagnosis podcast. Ronald fry. How are you today?

Ronald 0:06

I am awesome.

Lainie 0:09

And where exactly geographically Are you? In the world?

Ronald 0:14

Lone Tree, Colorado.

Lainie 0:16

Okay, I just spoke to someone from Denver, Colorado, is that close?

Ronald 0:21

Maybe a 15 minute drive south. It's a southern suburb.

Lainie 0:25

Fantastic. Well, thank you for taking the time, because it's like ending your day now. To speak to me. Now, the purpose of this podcast, as you know, is to go deep into what you've been diagnosed with and how you're dealing with it. So I'm going to let you talk about what you've been diagnosed with, how long ago and a little bit of a brief description of, of how it affects your life.

Ronald 0:52

Okay, in 1999, I was diagnosed with sarcoidosis, I was having problems breathing shortness of breath. So start seeing doctors and eventually I got sent to a specialist. And he came up with the diagnosis, basically is, sarcoidosis is not necessarily a lung disease is it's a rare disease that attacks the arteries, it could attack anything your heart, your kidney, you just happen to attack my lungs. And basically what happens is it causes swelling, whatever it attacks, and we have no your lungs swelling is not good. And just like, like a form of asthma, you know, I don't I can't say if it's a little more intense or not, because I've never had as you know, problems insidious occur. But yes, it definitely could cause attacks and breathing issues. And it's weird, because before I started having to breathe and problems, my brother got me to reading some yoga journals. And I didn't think much of them I was I would glance through all but first sign of problems with my breathing. I just happened to slide into a chapter. And it talked about performing these yoga exercises every day. And it'll assist you with any type of breathing problems. And I thought I'd give it a shot. I didn't get really into it right away. But eventually, as I learned how serious my lung condition was, I figured it wouldn't hurt. So I start every day making the everyday exercise. And right away, I realise how helpful it was because if I took a day or two off, I would have problems breathing. Wow, the person who wrote the article, he pacifically said, you have to do these exercises every day of your life. He mentioned that. And I've quickly learned why he said that.

Lainie 3:03

So how old were you in 1999?

Ronald 3:06

I was 29.

Lainie 3:10

Okay, so just to get an example of a bit of your background, which is so interesting, Ron, what was your life like before you got diagnosed where you're a smoker? Like why was your breathing laboured? Because of different things that you were going through in your life? Or was it genetic?

Ronald 3:31

Nobody at my family had any type of COPD problems at all. It could be a various amount of things. I smoked a little I didn't smoke a lot. I smoked a lot of marijuana. I didn't smoke a lot of cigarettes, though. But I never put too much focus or emphasis on it. But maybe a span of 18 months prior to me having breathing problems. I was incarcerated at a super maximum facility in Colorado, and I became a janitor and I would clean the small shower areas. And the chemicals were very, very strong. I never thought nothing of it until years later. But there's a good possibility that those chemicals could've damaged my lungs because I know for a fact that they were just so strong

Lainie 4:23

and you were incarcerated before you got diagnosed as a juvenile?

Ronald 4:28

I was incarcerated. When I got diagnosed, I got back while I was still incarcerated. I was being sent out of the prison to a facility doctors facility outside of the prison.

Lainie 4:41

Oh, so you were already inside and then these problems are happening. Right? Okay. So what what age were you when you got incarcerated is probably a lovely way to say it.

Ronald 4:53

20 years old. Yes.

Lainie 4:54

Did you have breathing problems before you went in? Or did they start when you went in side

Ronald 5:00

never had any problems breathing prior to that incarceration. But like I said, nine years later, definitely.

Lainie 5:08

So you've gone to see the doctor, what actually made you like, you know, wake up one day and go, I cannot do this anymore. I've got to get help.

Ronald 5:17

Okay, how am I tell you this? You tell the story. I don't think I got to that point. But here's when I knew something was wrong. And I had no inkling anything was wrong. I used to do pull ups and push ups sit ups exercise everyday, like I said, I was in a maximum security, actually, they're called Super maximum securities in the United States. And it's it was a situation then thats' illegal now. They don't even they're not allowed to do it. And if prisons anymore, but they would lock you in a cell 24 hours a day, to punish you for things that you done, within the prison system. But anyway, a lot of people they try to stay focused by exercise, and I exercise a lot. I was in great shape. So I got told I was the janitor, and I feel I had called the problems from the chemicals. But I was walking up the stairs with a mop bucket full of water one day, and there's a guy who's in a cell at the very top of the stairs. And he said, Tiger Do you have asthma? Say no I got no asthma. I say well what make you ask that? he said because you lost your breath walking up the stairs. And it kind of blew me away, like, what is he talking about? But then I had to, you know, gather my thoughts. Like if he said that he had to notice something. He's locked inside of a cell. And he noticed that. And sure enough, right after that, that's when I started noticing I'm having labour problems breathing. I couldn't exercise as much as I was. My exercises were being really really laboured. Because I would lose my breath after doing pull up. So finally I went to a doctor. And it turns out the prison doctor told me I had pneumonia. So I got medication.

Lainie 6:58

Sorry to interrupt, were the cells cold?

Ronald 7:00


Lainie 7:00

Yeah, right. Concrete.

Ronald 7:02

Yep. Cold 24/7 Shit.

Lainie 7:06

Yeah, okay.

Ronald 7:06

Yep. You know,

Lainie 7:08

the puzzle unfolds.

Ronald 7:10

You It's like you was there. Concrete coat. Yeah, that's what was going on in that facility.

Lainie 7:19

So okay, so So you were diagnosed with pneumonia, right

Ronald 7:23

first, and then they gave me some antibiotics. And that got cleared up. And the breathing still didn't clear up after that. It was still problems. And that's when I went and they started giving me inhalers this that and stuff, but nothing was clearing up. So finally they did a test. And there was something I forgot the name of the test, but it determines your lung capacity. And she told me I my lungs were like 130 years old or something she said, but they were in bad shape. And that's when we started taking the measures to see the lung specialist and asked when I eventually got diagnosis with sarcoidosis.

Lainie 7:59

Wow, I'm not surprised. Did you see much daylight? Did they let you if you're in this super, super duper maximum security do they let you see the sun.

Ronald 8:08

So this one, I wrote a section in one of our books where I talk about that actual facility I was at, I was in a cell for six and a half years, I saw sunlight, but because the way the cell was I didn't see the sun for six and a half years. I saw daylight, but I didn't get to see the actual sun. It didn't dawn on me til years, years, maybe 10 years after I was out of that situation. And I was writing one of my books and I say wow. And that's just a chapter did ventured off into and you know, just start talking about that and one of my books, but yep, six and a half years, no sunlight.

Lainie 8:50

Unbelievable. I mean, that's punishment enough, forgetting that you're incarcerated. We won't segue too much into this but with all this COVID stuff going on, and the you know, alternative practitioners talking about how important vitamin D is for the cells to boost your immune system. There's a lot of talk around vitamin D and so if you're dealing with this inflammation in your body and you weren't getting any natural vitamin D and I'm assuming they didn't hand you supplements or vitamins to help you get better on any level, but that assumption be right yes, definitely.

Ronald 9:25


Lainie 9:26

So you were you were on your own you the survivor, you know, body had to just do what it could do. Tough Ron tough. How long did they keep you out of jail for I hate to say that what's a nicer word to use?

Ronald 9:40

As that's fine as that's what it is. It's it's it's like it's what they call a day trip. They shackle you you they handcuff you, they take you a couple of guards take you to the doctor. You see your doctor and you come back to the prison is it's not overnight thing is just like a doctor's appointment for you. But I'm being assisted restrain,


right. So they ran tests. They diagnosed you with this sarcoidosis. Yes. And what did you leave that doctor's office with that day as as far as the prognosis for the future and medications?


Well, it wasn't much given to me because, you know, I was incarcerated, and I didn't have any insurance is that now there but I had my mom do research on it. She did a lot of research. And she kind of was like my doc. And the first thing she told me because they tried to give me a lot of prednisone to keep the swelling down in my lungs. And right away, she told me she don't want me to stay on that. That's not good. It's a wonder drug and helps a lot of stuff. But you don't want to get too much into using that prednisone because it has bad effects. So I had to take it because I had some real serious problems breathing for a while. And it did take the swelling down in my lungs. But outside of that, like I said, this was like listening to my mom, she guided me. Let me see I think I was incarcerated 12 more years after the diagnosis, and I kind of just had her walk me through and they gave me a que var inhaler and albuterol inhailer and I was allowed to go to the prison doctors facility to take nebulizer treatments and


that that's more for asthma, isn't it? Or? Yeah, it's not specifically for what you had. Did you continue doing the janitor work? Or did you make the connection and go now I don't want to do it anymore.


I definitely got away from the chemicals to this day. I won't work around chemicals, chemicals can have effect on a person. We're great lung capacity, if you're not know what you're working with it, but I just have to be extra careful.


Yeah, I guess being incarcerated, you've got no control over your diet at all really do.


I got lucky. And I woke up fast, you know, I became a big fruit eater, they only give you a certain amount of fruit. So what I would do, I was fortunate where I didn't have financial problems while I was in there. I could pay guys for their fruit, I keep apples and oranges them, I say I'd get extra bananas, I eat lots of vegetables. And I would pay people who worked in the kitchen and they would find ways to bring me stuff back to the Sell house and I just I tried to make my diet as healthy as you could in there. You know, you actually can buy vitamins off a canteen. So you know, I started getting myself vitamins. And like I said is I was fortunate that I was financially able to do all have stuff that could assist me with getting my diet a little better. But if you're not financially abled, and there's no way you can even come close to having a healthy diet in there, or you just be eating what the state feeds you.


Right? So you really got to battle your way through. That's right. Were you able to, like read any books about this and empower yourself that way to understand it more,


they had zero about it. To this day, they know very little about the disease. But you know that the little bit they do know you can go on the internet and pick stuff up. I can't say cuz I haven't checked lately. But when we first start researching, it was a disease that only attacked African Americans in the United States. Outside of the United States. Maybe in your country. There were people who were diagnosed with it who weren't. But in this country at that particular time, it was just a disease that attacked African Americans.


Okay, bizarre. Does anyone else have it that you know?


Yes, my mom's childhood friend in Chicago has she's probably 80 years old. But I don't think she's as heavy into focusing on it like I am. I mean, she's retired she probably doesn't do much so she pride on me too. But because I do work lots of hours a week. You know, I go places I have grandkids if stuff like that. I got to really pay attention to it. And I don't lose focus. The guy in the Yoga Journal his exact words was he's not telling people to not take the man made medication for your breathing problems. But he's He assured you, if you did these yoga exercises every day of your life, you will be better off and I still take I have two inhalers that I have to take every morning and I still to all that stuff, but I know that yoga, it gives me over the top.


That's fabulous. There's a lot of conversation around breath work at the moment for all of us, you know, regardless of inflamed lungs or not just all the anxieties and lots of other conditions that are turning back to the breath as medicine. Lucky you got onto that quite early,


very early.


So when you were diagnosed I read that it's incurable. Do you believe that?


I can't say I do, or don't believe it's incurable. But I do believe it's manageable. Hands down.


And how long have you been a free, man for now?


I was released September 2015.


Okay, this is totally off topic. But was it hard to reintegrate into society after such a long time?


It is hard. But it wasn't hard for me, because why I had great family and friends support as well. I made a decision before I was released, that I was going to change my way of thinking, and that I was going to succeed out there. And I did everything my last 18 months to prepare myself mentally. I mean, that's all I can do in there. You know, I can't job hunt while I'm in there. So I prepared myself. I prepare myself mentally. And I've stayed on course.


And as far as managing your condition outside, if do you find that you feel healthier? I mean, this is a ridiculous question to say, but fuck it. I'll say it anyway. Have you found that your condition has changed being on the outside?


Most definitely.


Talk us through that.


You hit the nail on the head when we first started this conversation, the temperature in cells. I mean, every now and then you could get fortunate, and they might have a livable situation. But most cells in the prisons I was in the wintertime is very, very cold. I've had altercations with prison guards over the freezing temperatures in a prison cell. It was unacceptable.


Yeah, it's not really a place where you go to get healthy. I suppose. It's a system that you're punished for your choices. So yeah, battling a condition in there would be really tough. But you've lived to tell the story. And how are you now? empowering other people about your journey Now that you're out. you mentioned, you wrote a book? What's that called?


I wrote, my first book is called God can and God will. All you have to do is ask. And I'm going to say something real quick about that. Somebody asked me, Why do you choose Christianity. And I told him real simple is what worked for me. I tried a lot of stuff to get my mind right before I got into prison. That's what got my mind. Right. My now work for you might not work for my fast. But it worked for me. My second book inside outside the ultimate love story. It varies. It talks about me growing up in Chicago. And I want people to see that side as well as the prison side to understand why I wrote the book. Because after being a not so loving person for so long, for a woman to come into my life, and just like hit me over the head with a club and right away, I'm starting to understand and feel this love thing. And not the love of a man and a woman just love period. You know, and I try to stress that in my book. You know, I met my fiancee when I was incarcerated as she was a prison guard. Ultimate love story. That's the name of the book, ultimate love story. Inside Outside the ultimate love story. Ironically, that's the exact name of the book. Like I said, it wasn't so much about me, falling in love with her when I met her, although I did didn't understand it two years later, but it's just how she instantly softened me up. I was a real hard, dark person. And right away from the very first time I met her. I said, Wow, something's going on here. Or the inmates would tell me, man, you're acting different. What's wrong with you? And it's awesome. I mean, I'm thankful every day that I have her in my life, because I know, she was a key part to all of my change.


That's magnificent Ron. So would you say now that you constantly need to think about the inflammation in your lungs with what you do? And would you say that you love your diagnosis? Or are you just kind of living with it and managing it?


You say do I love my diagnosis? Is that correct?


Oh, yeah, that's exactly what I said


I've never thought about it. Like that. Sounds kind of weird, but I guess you could say I love my diagnosis because I think it played a part in me changing. It made me take life more serious, because at the time I hadn't even attempted to change my life around. You got to remember I was incarcerated for 12 more years after I was diagnosed I was still little bit on the crazy side. But a part of me had to stop because I knew I didn't want this disease to take me out. So I had to stop putting focus on that. And yeah, I think it made me start taking life a little more serious. And because of that, yeah, I think I do love it.


It could go both ways for you, it could be a constant reminder of where you got it. And how you got it true. Or yeah, it could be seen as a gift, which is what you're choosing, which I commend you on. And like you say, every every condition, everything that we have to deal with, it does teach us it's it is a teacher, just to go back onto the lifestyle part of managing it. Do you find that certain foods that you eat? Or hay fever or certain weather temperatures? Like when you get cold down? Does it act it up?


Well, I've always and people joke because before COVID, I would always have masks on in the wintertime. And people would say why do you wear a mask? to keep the cold out of my lungs. So you know, they kind of joke about like this guy used to wear masks before COVID Not so much. Because like I said, I make sure I don't get cold in avoid the chemicals. And I'm not sure what used to cause my outbreaks in prison. But I haven't had any since. I mean, I've had problems with my breathing. But sarcoid causes skin problems. And I would get bad rashes when I was incarcerated from the sarcoid. I mean, really bad. And since I've been home, I may have had one or two. And it hasn't been nothing like the ones that I used to get the rashes in there. So it's definitely something that's different just because of that alone. Because I definitely used to get rashes on my arms back of my hand, I'll very bad and I just don't get those anymore. And that could have been a big part of the diet. Because you just no matter how much you get your vitamins and how much I tried to get my apples this that know that my three main courses came from the state.


Yeah, right. And the environment, I imagine that there'd be a lot of anger in a place like that, that that energetically you pick up on as well, that would have to have an impact energetically on the people in there. You know,


definitely. And there's something else that I'll talk about in my books. I'm a big energy person. And that's, that's big. And there, I'm a perfect example is when I made my change, my last 18 months, it directly impacted a lot of real bad people. Because I used to be one of those bad people with them. And now they're wondering, like this guy sitting in a cell, reading a Bible, this guy's in there studying for Cisco certification all day, and won't come out of his cell. I used to just be running rapid, like a madman through the prison. So me changing the energy that I was putting out, because of my change. It was directly hitting people. I had a situation in there. And I'm just gonna give you a little bit because I want you to read about it in my book, it could have turned so bad so fast. It was racial. You know, it was it was whites and blacks race wise. And because the positivity that I bought to the situation, it just died down and disappeared. I had to write about it in my book, because situations don't die down and disappear in prison. It just don't happen. And it just shows you the power of energy. I mean, I was just so positive about it. And everybody had to be like, well, wow, there's no way this guy's being as positive about this. And there really should be bloodshed right now all over the dining room. It was so weird. And just stuff like that has just opened my eyes to a whole different world literally.


So happy to hear that from you. And so happy that you got to make a bit of a change in the energy of the system before you left as well. I'll wrap it up with this question for you. Is there any parting words that you can say to people, to anyone that might be experiencing some lung conditions that you recommend?


Definitely any type of breathing situations, COPD, asthma, anything is have is causing you problems with your breathing and you've diagnosed with some do breathing exercises. You can Google all type of breathing exercises, they'll tell you, I mean, you can just sit on your couch and take deep breaths in your nose with your mouth closed. Hold it in your lungs exhale. You do that five minutes a day. You're going to be because your ex basically I like to joke and say yoga is weightlifting for your lungs and is definitely going to make a difference. The mindset I'm so big on the mindset. If you have a positive mindset about any diagnosis, you just you're gonna be so much ahead of the pack. Because, sadly to say, a lot of people, they get down when they're diagnosed with something. And that mindset is just such a game changer. If you think everything's gonna be alright, it's going to be alright.


Yeah, empower yourself research that's been a lot of the common common threads of a lot of people I've interviewed, get in, get in the driver's seat of your diagnosis of your condition. Be part of the solution, not part of the problem.


You go driver's seat, don't be a passenger.


Oh, it's been such an amazing, I knew this would be a great little interview. Thank you. Is there anything else you wanted to kind of say to wrap up, or


I'm just so grateful that you invited me this is my first podcast. I've been interviewing for podcasts for the longest, I am very grateful to you.


Well, hopefully this will spark more interest in on different different aspects of this because of your life. Fascinating. Thank you so much for taking the time to share your story fascinating. And I'll send you the link when it's open and you can share it to wherever the hell you want to share to.


Awesome, appreciate it.


My pleasure. And thank you for being a survivor and totally changing your life and being part of the community. Well done. You Thank you. Fam up. All right, Ron, take care of yourself. You do the same bye for now.

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