Aug. 30, 2020

Julie Caviezel - Mom and Cannabis Advocate

Julie Caviezel - Mom and Cannabis Advocate

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm very excited to have on this guest this week. I think it's awesome to bring in fellow people with Ankylosing Spondylitis to not only hear their story, but also learn from them about what they're doing to deal with the pain deal with Ankylosing Spondylitis. And not feel so isolated and alone, like a lot of us can, because there's so few of us in the day to day life that you might meet. So, this guest I think she's really special. She has a Instagram page that we'll talk about in a little bit as well. But her name is Julie coversyl. Julie, welcome to the show.

Julie Caviezel:

Thank you for having me, Jayson.

Jayson Sacco:

I want to touch base on a couple things. You have Ankylosing Spondylitis and have been diagnosed, but you went through a long journey to get that diagnosis. Can you talk a little bit about that? So that I think it's like I said, I think it's really important for women To hear other's stories to know that they're not alone and that there's sometimes you have to be their own best advocate for this disease.

 

Julie Caviezel:

Yes, definitely. For me in particular, it was a long journey, and over 20 years of trying to find a doctor who would listen, and a lot of male doctors, especially even female, would just kind of dismiss me as being overthinking it. I heard my primary care doctor of yours said, you just think too much. You just need to you know, not not worry so much. I think it's all up in your head and I heard the, the phrase I think it's more psychological than physiological all your blood work looks great. There's nothing wrong with you. You're in perfect health and when you as a patient Place your trust in your doctor and you're seeking medical advice. And you keep hearing that over and over for years, it really starts to mess with your head and make you feel like there's something wrong with you even though you know in your heart of hearts, that it's not psychological. But you almost start believing them because they're the expert. They should know. Right? And I think it's really important for everyone and I would say women, especially to listen to our bodies, and don't be dismissed. Don't take no for an answer. If you feel in your gut that there's something wrong, keep pursuing it. And my parents call me a pitbull because I tend to be tenacious and very loyal and to the point where I would probably lay down my life for a friend And those are breed characteristics. And with that, I also tend to not give up. And, but there were times over the 20 some years where I felt like giving up and I did, I would for a little bit, whether it be like a few months or a year or so and then I'd kind of try to find another specialist and it just it took a long time. And it wasn't until my symptoms got really severe that I was taking more seriously. And I lucked out I go to really cool clinic up in Seattle, it's called the poly clinic, I highly recommend it. It's doctor owned, it's there's not a lot of bureaucracy, it's like a pure like they just really want to help people. It's kind of the best of the best. And that's where I have found my specialists cardiology dermatology because I've had melanoma. I do have very early stages of coronary artery disease. as well and so now my rheumatologist is there so? Yeah, I mean, it took finding him who he sat there and he saw my x rays after he ordered them which no other doctor had. which, to me the golden rule that I found out is when you're testing for abs, it's not just the blood test, your doctors are also supposed to order the X ray. And no other doctor had done the X ray. They'd only done the blood test and for me and my family, my mom has it and other people on her family habit. They all test positive for that mutation. I don't.

 

Jayson Sacco:

So your mom and others that have Ankylosing Spondylitis are HLA b 27 positive. Your blood work was coming back for you being negative, negative. 

 

Julie Caviezel:

Uh huh. 

 

Jayson Sacco:

Oh, okay. So hence the doctors start. As a woman, the doctors start not ordering x rays. 

 

 

Julie Caviezel:

Yep. 

 

 

Jayson Sacco:

See, that's really a disservice to you.

 

Julie Caviezel:

Oh, for sure. 

 

Jayson Sacco:

So, where did your pain start?

 

Julie Caviezel:

My neck early on, probably about 18 or 19 years old start maybe even younger than that. I couldn't, I noticed. Just working out I couldn't do sit ups like everyone else could it would hurt really badly. And I'd have to kind of cradle my neck and modify and that was at a pretty young age, and then it just kind of got worse and worse. I was told I had what looked like a C curve in my spine at one point by a chiropractor that was in my early 20s, lower back pain, you know, progressing on and yeah, just kind of, then more and more symptoms would appear. My neck is always been a constant. I had a horseback riding accident about 10 years ago and I had a compression fracture in my L five in my spine. And I think that must have maybe triggered some of the pain down in my head since a sacroiliac region and that's what showed up on the X ray done a year and a half ago.

 

Jayson Sacco:

So when that X ray was done a year and a half ago, that was say 18 ish 19 is yours since symptoms had kind of been noticeable for you. 

 

Julie Caviezel:

Yeah. 

 

Jayson Sacco:

What did it look like? Were you seeing just inflammation or fusing or both?

 

Julie Caviezel:

So he I rheumatologist showed it to me and he said right there he pointed to the fakro iliac joint and the hips and he said that's, that's a yes. And so I I didn't ask a lot of questions. It does. I don't think it's using yet but I don't know for sure. I haven't gone I've gone back once because he really wants me to go on Humira. And that's a whole other topic. For a while. I think I had my head in the sand and wanted to be in kind of like denial about it. So hey, I got my diagnosis great, I'm validated but I don't want to focus on it right now. So, that being said, I know there is joint damage and inflammation around there. He also did a kind of the ultrasound where he goes almost head to toe and looks at joints and said that I had basically like tennis elbow and all my joints. So that was another tool. He used to diagnose me. So he he used some sort of an ultrasound to measure my levels of inflammation in my joints and determined that I have like a pretty high number. So that was also a diagnostic tool he used but he's the first specialist I've been to, I've gone to two other supposedly renowned rheumatologists over the years and they they just would sit and talk to me and hold my hands. And then put me on like, try put me on Neurontin and tell me, I had fibromyalgia. 

 

Jayson Sacco:

And what you said was interesting, and I The reason I asked about where your pain started, you had no idea I was gonna ask that this week's episode I'm doing that come out tomorrow, I noticed a fact from the Spondylitis Association of America that said that a lot of women's pain starts in their neck, not their lower back, and kind of works down in reverse. So it's true, you almost fit that your classic in that you've had the neck pain, but you don't have the gene which really, I think people need to pull back on that you've got, you know, there's too much focus, I think, put on that HLA b 27, that you do or don't have it.

 

Julie Caviezel:

A lot of false positives and false negatives in any genetic testing. So it could be that I just, it's a false negative Who knows? 

 

Jayson Sacco:

Yeah, so I, I think you've got to look in and now with a much more wider understanding of non-radiographic axial spondyloarthritis. You really as a doctor, have to look at the whole picture and let's face it, osteoarthritis, rhuematoid arthritis; those are the doctors bread and butter. They're going to see 15 people with rheumatoid arthritis or osteoarthritis, for every one they see with ankylosing spondylitis, I get that. So they're going to be more in tune with those other conditions. I know that. And that's why I have to be more of an advocate more of a knowledge base for the doctor. The greatest thing now is all these doctors have these email systems. And I've uploaded numerous files to her system on Ankylosing Spondylitis to say, just in case you haven't seen this, here you go. Now she wants to delete it that's on her, but I've at least provided it to her.

 

Julie Caviezel:

Right. I know even my primary care doc admitted to me, I mean, was pre COVID. So it's all a blur, right? But my last appointment with her she said, be honest with you. I just there isn't much more information on AS now than there was 30 years ago. It's just not really studied. There's not a lot of it's updated.

 

Jayson Sacco:

I don't agree with that. I think there might be some textbooks that haven't been updated as much. You know, the whole axial spondyloarthritis family, I think is much more in the news. Now because of the ability for biologics to be used, right? From the pharmaceutical company, they have a vested interest to provide information on how they can or can't be of assistance using the biologics. From the doctor's standpoint, the biologics are advertised on TV. So you and I, as patients, we may be going in there and ask you about them. So they need to have some minimal understanding of what they're talking about. So good or bad, the cats out of the bag. So they have to have some basic understanding and it works. For example, I'm on Cosentyx, which works with psoriatic arthritis as well. There's Enbrel, which, you know, you've got different commercials on featuring different people. Everything is different times in different places that it's advertised. But I do think that that is good for the disease because it makes the doctors have to understand it better that they have to kind of go back to the books and look at it and say, Alright, I have Jayson that's got Ankylosing Spondylitis, I've got Julie, that I thought had fibro, but she keeps coming back and none of the treatments for fibro are helping, what am I missing? Hmm, Oh, she hasn't had an X ray in 15 years, or she's never had an X ray by me, or she had an X ray and it was no middle of the road. I need to order an MRI or whatever. You know, whatever the issues are, they need to dig deeper. And I don't know if they're capable of doing that at this point. And that's why I've been a huge advocate of being your own advocate. I had a gentleman on the show. Well, I don't know. 8-10 episodes ago, 10-12 episodes ago. James Allen, who came up with an app for your phone called Chronic Insights. He's out of England, and he has Ankylosing Spondylitis. Well, this app is basically designed to allow you, or any of the person that uses it to go in and input where they're having pain. And I think for a small fee, either on a yearly or monthly basis, remember, you can track numerous conditions, as well as create an exportable document for your doctor to then look at because I don't know about you, but every time I go to the doctor, they say, here's a piece of paper. Tell me how you've been feeling for the last five to seven days. And yeah, invariably, those last five to seven days? I've felt great, 

 

Julie Caviezel:

Or, yeah, and like you circle the number and or it's a smiley face and then a sap. Yeah,

 

Jayson Sacco:

Exactly, where's the, you know, the I feel like* bleep* three days a week and I feel mildly okay. You know, 12 days in a month and it just doesn’t, I don't think it gives them enough information. So someone like you goes through a 20 year period of trying to convince them that there's something wrong. And I get so aggravated about this because my experience was completely opposite. I was 14 years old. I had been in pain for four years was told over and over it was growing pains. Go to a chiropractor, go to a chiropractor. Finally, he was a family friend, super nice guy. And he finally said, Look, he goes, everything I've done, should have fixed it. He goes, there's something else going on in here. We need to get this looked at. So 14 years old, I can't even drive yet. My mom takes me down to a rheumatologist appointment. We're sitting there in the office. in comes the rheumatologist. He says, stand up, turn around. He looks at my hips a little bit. Now he also said some misleading information but which later change but not not because he was trying to be misleading as was because he was just saying what was thought of at the time. He says squeeze my hand So he put two of his fingers in my hands and squeeze those. Now I know he was checking to see if I had arthritis in my hands. He comes back and he says, You have Ankylosing Spondylitis? And I said, What's that? And he goes, Well, he goes, now I'm going to do the X rays, the bloodwork and everything else to verify my diagnosis of you. And I said, Okay, when got x rays, bloodwork, HLA b, 27, positive. Now, again, this is going back 36 years ago, so that was the main genetic marker. And he just goes, boom, boom, boom, here's what you got. See in six months. And I thought everybody got that. You go to the doctor, they tell you that Ankylosing Spondylitis to give you an end set out you go wasn't until I started getting involved in the community a decade ago, on these Facebook forums, and starting to hear from people like you said, Oh, no, I've been fighting my doctors for 20 years. And I'm like, What in the hell That's crazy. 

 

Julie Caviezel:

Do you find in your experience in the last 10 years of connecting with other is patient that it isn't the majority of women who tend to be dismissed by their doctors. Do you find it? Yeah, she, yeah, I, I feel like doctors in general, when a male complains of pain, they take it seriously, which I find kind of funny because I think women in general have pretty high tolerance of pain and being that we birth large babies. And so I would always say like, they'd asked on a scale of one to 10, especially once I've had three kids, and they're all like nine to 10 pound babies,

coming out, right, let's be real, and they'd say, like, on a scale of one to 10 how's your pain? I was like, well, 10 childbirth to me, and so I mean, maybe like a six or seven or you know, but I do feel like there is something to be said. And I don't know how to change that. Maybe it's just having these conversations and putting it out there and hopefully more healthcare partners will take women seriously. I don't know what it is about it becoming a sexist thing or, you know, discriminatory to women.

 

Jayson Sacco:

You know, I think it goes back to the original way this disease was looked at. And that if you, if you turn it back, I did it. Just out of curiosity. I'm a history major. So I did a history of a s and in looking back at it, they started off in the 16,17, 1800’s. They only looked at male cadavers. So, if I'm only looking at male cadavers, then I'm only going to see this disease in men. Okay. So fast forward that through a few hundred years of medical knowledge, and if you don't have any women in the studies, and something I learned from a gentleman that used to be the president of the Canadian spondylitis Association, is that when you look at the overall axial spondyloarthritis, that includes both non radiographic and as about two thirds of the People with AS are men. One third are women that that's not exact, but it's close. About two thirds of the non-radiographic are women and one third are men. So when you look at the axial spondyloarthritis umbrella, we're about one to one, it's about on par. Women just present different. And because they present different, and the doctors want to a, let's face it, they want to get you out of the office because they need to turn over that table. Yeah, they do want to help you. I don't want to make it seem like they don't want to help you. 

 

Julie Caviezel:

Yeah, I think there's maybe a burnout and tired of the carousel.

 

Jayson Sacco:

Yeah. And they have to do it in the fastest, most expedient way. And they know that if I diagnose you with if I diagnose you with fibro first and everything works, then I hit the nail on the head, because exactly because you weren't showing the HLA gene. The issue was that your family Is and so that was the missing piece. I just, I get very aggravated by it because man or woman, nobody should have to suffer with this damn disease.

 

Julie Caviezel:

Yeah and it's also frustrating to me because I try not to think about it, but just in our conversation, it obviously brings it up. But I wonder sometimes if I had been diagnosed earlier would I have had as much joint damage and pain and maybe my life would have been different. Who knows, I mean, it can be, especially when you're not diagnosed and you're kind of going down a rabbit hole of sorts and you're just in chronic pain and fatigue and you don't know what is wrong and you feel like you're fighting against your body. Like I liken it to walking in a wind tunnel against the wind and it's just this extremely frustrating, fatiguing, feeling that you're fighting all the time. It affects your relationships. I've lost friends because I've gone through periods It's where I've been so anxious and so irritable and just not myself. And so yeah, I mean, it definitely affects your entire existence. And I mean, I guess there's no point to do the whole what ifs, but it is.

 

 

 

Jayson Sacco:

Yeah, everything can derive a what if but I completely agree that I never knew if I was an anxious person or, and or have the as caused me to be an anxious person, but my anxiety level was through the roof. Sometimes bordering on just almost paranoia type levels of anxiety. Yeah. And I went unmedicated and it created issues. I've lost marriages because of it, friends, and I correct some of that and that's the next topic that we're going to talk about. I'm going to skip over the biologics for a minute. I am a huge proponent of them. But on top of biologics, there's also another way that you can help with things like sleep, pain, the anxiety that we discussed. And that's the use of cannabis. Yes. And you are a big proponent of the use of cannabis, which is one of the things I as am I, I think it's ridiculous that it's not legal in all 50 states and I, I use it for sleep not regularly I I don't use it near as much as I think might be fun, but it is a fantastic for me, anxiety reliever as well as a sleep inducer.

 

Julie Caviezel:

Mm hmm. For sure.

 

Jayson Sacco:

So how did you get into use of it?

 

Julie Caviezel:

Well, gosh, I mean, in high school, I didn't recreationally as more of a rebellious teen thing you know, and that was before it was legal in our state in Washington. So you would just you know, go a few bucks in on it with some friends in a ziplock baggie and you don't know what you're going to get right. And what I love fast forward to me as an adult, and you know, and then there was a period for maybe, I don't know, 15-20 years where I didn't use it at all, but once it became legal in our state, I actually had friends who own they own a series of high end, pot shops, retail, recreational pot shops, and it just really started to interest me the science...


Transcript

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm very excited to have on this guest this week. I think it's awesome to bring in fellow people with Ankylosing Spondylitis to not only hear their story, but also learn from them about what they're doing to deal with the pain deal with Ankylosing Spondylitis. And not feel so isolated and alone, like a lot of us can, because there's so few of us in the day to day life that you might meet. So, this guest I think she's really special. She has a Instagram page that we'll talk about in a little bit as well. But her name is Julie coversyl. Julie, welcome to the show.

 

Julie Caviezel:

Thank you for having me, Jayson.

 

Jayson Sacco:

I want to touch base on a couple things. You have Ankylosing Spondylitis and have been diagnosed, but you went through a long journey to get that diagnosis. Can you talk a little bit about that? So that I think it's like I said, I think it's really important for women To hear other's stories to know that they're not alone and that there's sometimes you have to be their own best advocate for this disease.

 

Julie Caviezel:

Yes, definitely. For me in particular, it was a long journey, and over 20 years of trying to find a doctor who would listen, and a lot of male doctors, especially even female, would just kind of dismiss me as being overthinking it. I heard my primary care doctor of yours said, you just think too much. You just need to you know, not not worry so much. I think it's all up in your head and I heard the, the phrase I think it's more psychological than physiological all your blood work looks great. There's nothing wrong with you. You're in perfect health and when you as a patient Place your trust in your doctor and you're seeking medical advice. And you keep hearing that over and over for years, it really starts to mess with your head and make you feel like there's something wrong with you even though you know in your heart of hearts, that it's not psychological. But you almost start believing them because they're the expert. They should know. Right? And I think it's really important for everyone and I would say women, especially to listen to our bodies, and don't be dismissed. Don't take no for an answer. If you feel in your gut that there's something wrong, keep pursuing it. And my parents call me a pitbull because I tend to be tenacious and very loyal and to the point where I would probably lay down my life for a friend And those are breed characteristics. And with that, I also tend to not give up. And, but there were times over the 20 some years where I felt like giving up and I did, I would for a little bit, whether it be like a few months or a year or so and then I'd kind of try to find another specialist and it just it took a long time. And it wasn't until my symptoms got really severe that I was taking more seriously. And I lucked out I go to really cool clinic up in Seattle, it's called the poly clinic, I highly recommend it. It's doctor owned, it's there's not a lot of bureaucracy, it's like a pure like they just really want to help people. It's kind of the best of the best. And that's where I have found my specialists cardiology dermatology because I've had melanoma. I do have very early stages of coronary artery disease. as well and so now my rheumatologist is there so? Yeah, I mean, it took finding him who he sat there and he saw my x rays after he ordered them which no other doctor had. which, to me the golden rule that I found out is when you're testing for abs, it's not just the blood test, your doctors are also supposed to order the X ray. And no other doctor had done the X ray. They'd only done the blood test and for me and my family, my mom has it and other people on her family habit. They all test positive for that mutation. I don't.

 

Jayson Sacco:

So your mom and others that have Ankylosing Spondylitis are HLA b 27 positive. Your blood work was coming back for you being negative, negative.

 

Julie Caviezel:

Uh huh.

 

Jayson Sacco:

Oh, okay. So hence the doctors start. As a woman, the doctors start not ordering x rays.

 

 

Julie Caviezel:

Yep.

 

 

Jayson Sacco:

See, that's really a disservice to you.

 

Julie Caviezel:

Oh, for sure.

 

Jayson Sacco:

So, where did your pain start?

 

Julie Caviezel:

My neck early on, probably about 18 or 19 years old start maybe even younger than that. I couldn't, I noticed. Just working out I couldn't do sit ups like everyone else could it would hurt really badly. And I'd have to kind of cradle my neck and modify and that was at a pretty young age, and then it just kind of got worse and worse. I was told I had what looked like a C curve in my spine at one point by a chiropractor that was in my early 20s, lower back pain, you know, progressing on and yeah, just kind of, then more and more symptoms would appear. My neck is always been a constant. I had a horseback riding accident about 10 years ago and I had a compression fracture in my L five in my spine. And I think that must have maybe triggered some of the pain down in my head since a sacroiliac region and that's what showed up on the X ray done a year and a half ago.

 

Jayson Sacco:

So when that X ray was done a year and a half ago, that was say 18 ish 19 is yours since symptoms had kind of been noticeable for you.

 

Julie Caviezel:

Yeah.

 

Jayson Sacco:

What did it look like? Were you seeing just inflammation or fusing or both?

 

Julie Caviezel:

So he I rheumatologist showed it to me and he said right there he pointed to the fakro iliac joint and the hips and he said that's, that's a yes. And so I I didn't ask a lot of questions. It does. I don't think it's using yet but I don't know for sure. I haven't gone I've gone back once because he really wants me to go on Humira. And that's a whole other topic. For a while. I think I had my head in the sand and wanted to be in kind of like denial about it. So hey, I got my diagnosis great, I'm validated but I don't want to focus on it right now. So, that being said, I know there is joint damage and inflammation around there. He also did a kind of the ultrasound where he goes almost head to toe and looks at joints and said that I had basically like tennis elbow and all my joints. So that was another tool. He used to diagnose me. So he he used some sort of an ultrasound to measure my levels of inflammation in my joints and determined that I have like a pretty high number. So that was also a diagnostic tool he used but he's the first specialist I've been to, I've gone to two other supposedly renowned rheumatologists over the years and they they just would sit and talk to me and hold my hands. And then put me on like, try put me on Neurontin and tell me, I had fibromyalgia.

 

Jayson Sacco:

And what you said was interesting, and I The reason I asked about where your pain started, you had no idea I was gonna ask that this week's episode I'm doing that come out tomorrow, I noticed a fact from the Spondylitis Association of America that said that a lot of women's pain starts in their neck, not their lower back, and kind of works down in reverse. So it's true, you almost fit that your classic in that you've had the neck pain, but you don't have the gene which really, I think people need to pull back on that you've got, you know, there's too much focus, I think, put on that HLA b 27, that you do or don't have it.

 

Julie Caviezel:

A lot of false positives and false negatives in any genetic testing. So it could be that I just, it's a false negative Who knows?

 

Jayson Sacco:

Yeah, so I, I think you've got to look in and now with a much more wider understanding of non-radiographic axial spondyloarthritis. You really as a doctor, have to look at the whole picture and let's face it, osteoarthritis, rhuematoid arthritis; those are the doctors bread and butter. They're going to see 15 people with rheumatoid arthritis or osteoarthritis, for every one they see with ankylosing spondylitis, I get that. So they're going to be more in tune with those other conditions. I know that. And that's why I have to be more of an advocate more of a knowledge base for the doctor. The greatest thing now is all these doctors have these email systems. And I've uploaded numerous files to her system on Ankylosing Spondylitis to say, just in case you haven't seen this, here you go. Now she wants to delete it that's on her, but I've at least provided it to her.

 

Julie Caviezel:

Right. I know even my primary care doc admitted to me, I mean, was pre COVID. So it's all a blur, right? But my last appointment with her she said, be honest with you. I just there isn't much more information on AS now than there was 30 years ago. It's just not really studied. There's not a lot of it's updated.

 

Jayson Sacco:

I don't agree with that. I think there might be some textbooks that haven't been updated as much. You know, the whole axial spondyloarthritis family, I think is much more in the news. Now because of the ability for biologics to be used, right? From the pharmaceutical company, they have a vested interest to provide information on how they can or can't be of assistance using the biologics. From the doctor's standpoint, the biologics are advertised on TV. So you and I, as patients, we may be going in there and ask you about them. So they need to have some minimal understanding of what they're talking about. So good or bad, the cats out of the bag. So they have to have some basic understanding and it works. For example, I'm on Cosentyx, which works with psoriatic arthritis as well. There's Enbrel, which, you know, you've got different commercials on featuring different people. Everything is different times in different places that it's advertised. But I do think that that is good for the disease because it makes the doctors have to understand it better that they have to kind of go back to the books and look at it and say, Alright, I have Jayson that's got Ankylosing Spondylitis, I've got Julie, that I thought had fibro, but she keeps coming back and none of the treatments for fibro are helping, what am I missing? Hmm, Oh, she hasn't had an X ray in 15 years, or she's never had an X ray by me, or she had an X ray and it was no middle of the road. I need to order an MRI or whatever. You know, whatever the issues are, they need to dig deeper. And I don't know if they're capable of doing that at this point. And that's why I've been a huge advocate of being your own advocate. I had a gentleman on the show. Well, I don't know. 8-10 episodes ago, 10-12 episodes ago. James Allen, who came up with an app for your phone called Chronic Insights. He's out of England, and he has Ankylosing Spondylitis. Well, this app is basically designed to allow you, or any of the person that uses it to go in and input where they're having pain. And I think for a small fee, either on a yearly or monthly basis, remember, you can track numerous conditions, as well as create an exportable document for your doctor to then look at because I don't know about you, but every time I go to the doctor, they say, here's a piece of paper. Tell me how you've been feeling for the last five to seven days. And yeah, invariably, those last five to seven days? I've felt great,

 

Julie Caviezel:

Or, yeah, and like you circle the number and or it's a smiley face and then a sap. Yeah,

 

Jayson Sacco:

Exactly, where's the, you know, the I feel like* bleep* three days a week and I feel mildly okay. You know, 12 days in a month and it just doesn’t, I don't think it gives them enough information. So someone like you goes through a 20 year period of trying to convince them that there's something wrong. And I get so aggravated about this because my experience was completely opposite. I was 14 years old. I had been in pain for four years was told over and over it was growing pains. Go to a chiropractor, go to a chiropractor. Finally, he was a family friend, super nice guy. And he finally said, Look, he goes, everything I've done, should have fixed it. He goes, there's something else going on in here. We need to get this looked at. So 14 years old, I can't even drive yet. My mom takes me down to a rheumatologist appointment. We're sitting there in the office. in comes the rheumatologist. He says, stand up, turn around. He looks at my hips a little bit. Now he also said some misleading information but which later change but not not because he was trying to be misleading as was because he was just saying what was thought of at the time. He says squeeze my hand So he put two of his fingers in my hands and squeeze those. Now I know he was checking to see if I had arthritis in my hands. He comes back and he says, You have Ankylosing Spondylitis? And I said, What's that? And he goes, Well, he goes, now I'm going to do the X rays, the bloodwork and everything else to verify my diagnosis of you. And I said, Okay, when got x rays, bloodwork, HLA b, 27, positive. Now, again, this is going back 36 years ago, so that was the main genetic marker. And he just goes, boom, boom, boom, here's what you got. See in six months. And I thought everybody got that. You go to the doctor, they tell you that Ankylosing Spondylitis to give you an end set out you go wasn't until I started getting involved in the community a decade ago, on these Facebook forums, and starting to hear from people like you said, Oh, no, I've been fighting my doctors for 20 years. And I'm like, What in the hell That's crazy.

 

Julie Caviezel:

Do you find in your experience in the last 10 years of connecting with other is patient that it isn't the majority of women who tend to be dismissed by their doctors. Do you find it? Yeah, she, yeah, I, I feel like doctors in general, when a male complains of pain, they take it seriously, which I find kind of funny because I think women in general have pretty high tolerance of pain and being that we birth large babies. And so I would always say like, they'd asked on a scale of one to 10, especially once I've had three kids, and they're all like nine to 10 pound babies,

coming out, right, let's be real, and they'd say, like, on a scale of one to 10 how's your pain? I was like, well, 10 childbirth to me, and so I mean, maybe like a six or seven or you know, but I do feel like there is something to be said. And I don't know how to change that. Maybe it's just having these conversations and putting it out there and hopefully more healthcare partners will take women seriously. I don't know what it is about it becoming a sexist thing or, you know, discriminatory to women.

 

Jayson Sacco:

You know, I think it goes back to the original way this disease was looked at. And that if you, if you turn it back, I did it. Just out of curiosity. I'm a history major. So I did a history of a s and in looking back at it, they started off in the 16,17, 1800’s. They only looked at male cadavers. So, if I'm only looking at male cadavers, then I'm only going to see this disease in men. Okay. So fast forward that through a few hundred years of medical knowledge, and if you don't have any women in the studies, and something I learned from a gentleman that used to be the president of the Canadian spondylitis Association, is that when you look at the overall axial spondyloarthritis, that includes both non radiographic and as about two thirds of the People with AS are men. One third are women that that's not exact, but it's close. About two thirds of the non-radiographic are women and one third are men. So when you look at the axial spondyloarthritis umbrella, we're about one to one, it's about on par. Women just present different. And because they present different, and the doctors want to a, let's face it, they want to get you out of the office because they need to turn over that table. Yeah, they do want to help you. I don't want to make it seem like they don't want to help you.

 

Julie Caviezel:

Yeah, I think there's maybe a burnout and tired of the carousel.

 

Jayson Sacco:

Yeah. And they have to do it in the fastest, most expedient way. And they know that if I diagnose you with if I diagnose you with fibro first and everything works, then I hit the nail on the head, because exactly because you weren't showing the HLA gene. The issue was that your family Is and so that was the missing piece. I just, I get very aggravated by it because man or woman, nobody should have to suffer with this damn disease.

 

Julie Caviezel:

Yeah and it's also frustrating to me because I try not to think about it, but just in our conversation, it obviously brings it up. But I wonder sometimes if I had been diagnosed earlier would I have had as much joint damage and pain and maybe my life would have been different. Who knows, I mean, it can be, especially when you're not diagnosed and you're kind of going down a rabbit hole of sorts and you're just in chronic pain and fatigue and you don't know what is wrong and you feel like you're fighting against your body. Like I liken it to walking in a wind tunnel against the wind and it's just this extremely frustrating, fatiguing, feeling that you're fighting all the time. It affects your relationships. I've lost friends because I've gone through periods It's where I've been so anxious and so irritable and just not myself. And so yeah, I mean, it definitely affects your entire existence. And I mean, I guess there's no point to do the whole what ifs, but it is.

 

 

 

Jayson Sacco:

Yeah, everything can derive a what if but I completely agree that I never knew if I was an anxious person or, and or have the as caused me to be an anxious person, but my anxiety level was through the roof. Sometimes bordering on just almost paranoia type levels of anxiety. Yeah. And I went unmedicated and it created issues. I've lost marriages because of it, friends, and I correct some of that and that's the next topic that we're going to talk about. I'm going to skip over the biologics for a minute. I am a huge proponent of them. But on top of biologics, there's also another way that you can help with things like sleep, pain, the anxiety that we discussed. And that's the use of cannabis. Yes. And you are a big proponent of the use of cannabis, which is one of the things I as am I, I think it's ridiculous that it's not legal in all 50 states and I, I use it for sleep not regularly I I don't use it near as much as I think might be fun, but it is a fantastic for me, anxiety reliever as well as a sleep inducer.

 

Julie Caviezel:

Mm hmm. For sure.

 

Jayson Sacco:

So how did you get into use of it?

 

Julie Caviezel:

Well, gosh, I mean, in high school, I didn't recreationally as more of a rebellious teen thing you know, and that was before it was legal in our state in Washington. So you would just you know, go a few bucks in on it with some friends in a ziplock baggie and you don't know what you're going to get right. And what I love fast forward to me as an adult, and you know, and then there was a period for maybe, I don't know, 15-20 years where I didn't use it at all, but once it became legal in our state, I actually had friends who own they own a series of high end, pot shops, retail, recreational pot shops, and it just really started to interest me the science behind it. There's so many studies showing especially isolating CBD and, and the effect that that has on pain and inflammation and anxiety and helping with sleep and blah, blah, blah, and these are all things I was struggling with. So I started I went into one of the shops, I love that you can go in, talk to anyone there and there's a binder of different strains and where it was grown and if it's organic, and I love that you can tailor your cannabis Use based on what your needs are. I'm a huge proponent of legalizing it federally because there is such health benefit. I've experienced it personally I'm a better mom, I'm a better wife. I'm a better human being using it. I don't get high. I do sometimes, but pretty rare. I prefer my method of choices of vape that I use that is a very high CBD low THC ratio. And I have two types that I like its pure oil. There's no additives, there's no flavors. My naturopath loves that I use it, I see results with it. I definitely struggle with anxiety. I used to get panic attacks, they would just kind of come on and I couldn't breathe and it's pretty scary when you're driving down the road with your kids and a panic attack just comes on. So this I don't have panic attacks anymore. If I run out or my vape doesn't work or my pen, maybe The battery's dead, I can't find my charger and maybe I'm without it for a few days. By the end of a few days, I start to notice my pain is way worse. I'm way stiffer in my neck, I have difficulty walking.

 

Jayson Sacco:

So for anybody listening, that's not understanding what vaping is. Could you explain what a pen is, what oil is, and the basic process of how you would vape the CBD oil, and even how you determine what level of milligrams was appropriate for you.

 

Julie Caviezel:

Right, that's a good question. So for me, I liked the idea of the vape because it's not the thick heavy smoke from a traditional joint or bud that you would use in a pipe or what not or bong. You know, however, I prefer that it's a cleaner way there's no smoke. It's convenient because you can carry it around with you. The type made for my friend's business, it has their logo on it, they actually have their own battery factory in Michigan, in Flint so they control the safety and longevity of the battery and I you know because you hear these horror stories of the vape the E cigarettes blowing up in people's faces and not all is kind of scary, but the oil that I use is by a brand called Fair Winds but the problem is each state has their own manufacturers I know that you can go online and look up fairwinds.com I believe it is.

 

Jayson Sacco:

And does your friends shop have a website so that anybody that's in in Washington can connect with them?

Julie Caviezel:

It is called the gallery. The gallery is definitely kind of the Nordstrom of pot shops, very high end beautiful artwork, excellent customer service. I just can't say enough good things about it really good selection. So for me I and I'll go to others too that are maybe closer to my home and more convenient But what I love is that you can tell the person I don't want to get high, I just am looking for something to manage pain or anxiety. I would like a high CBD, low THC, so that I can microdose during the day and not be high, I could do it in the car while I'm driving or in the grocery store, wherever if I feel like maybe some anxiety is coming on. I can take a quick little puff of it, and it just brings whatever levels are going up, it brings it down.

 

Jayson Sacco:

So when you say puff, does it look like an e cigarette like just a long tube?

 

Julie Caviezel:

Show you, obviously the listeners aren't going to see it.

 

Jayson Sacco:

Okay, so it's, it looks like a co2 cartridge, maybe a little bit bigger than a co2 cartridge, if that makes sense for some listeners, and so yeah, you just put the oil in there.

 

Julie Caviezel:

Yeah, it comes the cartridges separate and you can just it's interchangeable. You can take it out and this one is a 10/1 ratio I also have a 20/1 and a 5/1 is a little bit stronger. I have that in tincture drop formula as well as this but for my day to day I stick with more of like a 20/1 or 10/1 ratio that's a CBD to THC. There's a lot of information out there showing that you do need a tiny bit of THC to activate the CBD. I have found that to be true for myself. I've tried to straight up CBD that you can get it anywhere retail right now it's legal because there's no THC in it. But to me, I don't see any. I haven't found personally any benefit in those products. I find it makes a difference if there's a tiny bit of THC.

 

 

Jayson Sacco:

And that's I think the big issue is that just like everybody being different with Ankylosing Spondylitis, somebody could walk into a shop that sells just CBD products. That, you know marijuana is not legal in and they could try it they might have to take more CBD than you but they can find that a certain level, a tincture a drop whatever works. And then they they're on their way they go and it works for others it doesn't. And they end up reducing; I've got to find something with a micro dose throughout the day. And I honestly don't even know what when somebody says micro dose. I don't know if there's a general like eight to 10 puffs a day, two to three puffs a day. I guess that's really going to be determined upon you the user. What helps you

 

Julie Caviezel:

It is, it's so individual and that's what's an interesting part of this topic and cannabis in general. It is not a one size fits all. Herb. I don't call it a drug because it's it's a plant. Let's be real. It's not a drug. It's not manufactured in a facility. It is a planet and so I call it an earth If everyone's chemistry is different, everyone's brain chemistry is different. So one strain might be great for me and might make someone feel super paranoid and weirded out. And I guess what I would say to people who are trying it is just start out really low. If you do have it, where it's legal in your state, and you can go into one of these shops, I would highly recommend that you just talk to the person working there, tell them what your needs are. A good shop is going to listen to you and they're going to find you products to try. And if you don't have success with one particular strain, don't write off the whole plant. There are so many thousands of strains out there. I would just say keep trying because it's not going to harm you. And if you do get something that's a little stronger than you wanted, and you may get a little high and it feels weird. It wears off in a couple of hours. You're not going to die from it. Show me one person who has ever died from pot? I don't think it's out there statistically, I may be wrong, but I'm not

aware of any.

 

Jayson Sacco:

Yeah, I've never heard of it.

 

 

Julie Caviezel:

And think about, you know, those same doctors who are prescribing pain meds like, I mean, I've been prescribed oxy and all sorts of very dangerous drugs that are highly addictive and lead statistically to opiate use and addiction and overdose and heroin. Right and, but then they're Pooh poohing cannabis, that's it doesn't lead to any of that a lot of a lot of people say it's the gateway drug. And I always say I'm sorry, but alcohol is the gateway drug if we want to be honest here because I think that as teenagers starting to experiment will start with a beer or sneak at their aunt's wine cooler or white collar, whatever. I don't think people go straight to smoking weed. Do you know what I mean? I just their steps. Let's be real. I didn't start smoking pot. First I snuck my aunt's wine coolers when I was 15 or so I believe.

 

Jayson Sacco:

I don't buy the whole gateway thing. I think it's a personality issue. You either have a personality issue that's going to keep looking for that next high or you don't.

 

Julie Caviezel:

Personality, yeah.

 

Jayson Sacco:

And you're either going to be addictive to drugs, alcohol, work, sex, whatever, you're going to choose a vise and issue and you're going to tackle that and be addicted to it, you know, in one form or another. And everything about the use of marijuana is tied back to Randolph Hearst not wanting it to can't, because hemp made such cheap, inexpensive, high quality paper and he at least and and are bought hundreds of thousands of acres in the south. To make his paper mills, he couldn't afford to have marijuana competing against his hemp production. Ford wanted to use hemp in the production of the car bodies because it could be smacked in and, and a lot of times, it didn't need to be bumped out like steel and iron and all that it was resilient and lighter. So then you end up with movies like reefer madness, and the idea to scare the population, you know, into this crazy drug that had been being smoked for years

 

 

Julie Caviezel:

And to, there was an undertone of, you know, black men smoke marijuana and rape our white women. That was, of course, campaign that Hearst paid for himself.

 

Jayson Sacco:

And I mean, there was no internet there was no anything. The mode of distribution for information was the newspaper. Yeah, and if you control the newspapers, You control what the general population sees and now they've got this great brand new technology called movies. Let's create a crazy off the wall movie so yeah, it's it's really so overtime to remove this from the federal drug laws. Look at all these poor kids sitting in prison with real criminals.

 

Julie Caviezel:

Pedophiles going free especially I don't know about your state but when COVID hit our governor released a bunch of pedophiles and rapists from prison to try to make her friend but the pot offenders were still in prison. It made no sense to me. I to most of us, we just don't get it. I

 

Jayson Sacco:

Yeah, it is. It was a well, there's this last few months. There's nothing that's really made a lot of sense. It's been a lot of grittiness, but so I've used a type switching back to the marijuana. Yeah, and I do smoke it just because I'm not familiar with the vaping end of it, but I really Like that, I'm gonna have to look into that. Yeah, I use a brand or not a brand, but a strain, called Krazy Glue that I found works well for making me sleepy. And with my sleep apnea, I'm, I'm out, I put my mask on, and I'm out for the night. But what's amazing is you can go to websites like leafly.

 

Julie Caviezel

Leafly is great, I would highly recommend leafly.

 

Jayson Sacco:

Yeah, they can go into leafly and research hundreds if not thousands of different strains that are available. And then yeah, if you know if you've read these three strains, don't be tied to them be open to what your local store has. But then you can at least go in and say, Well, I read about x. I like the sound of it. And they might tell you that that strain is not available in whatever state you're in. But this strain is, heck, I I watched an interview on YouTube yesterday that Jim Belushi is now got a large pot farm in Oregon. That's awesome and is growing a string called Captain jack.

 

Julie Caviezel:

Captain jack? Okay, I'm gonna have to look into that I have a friend who grows down in Portland, Oregon and blared farms. Tahlia wash. She's awesome. And they do hydroponic growing and just super happy. Yeah. And I actually met her down in Canada beach a few years ago. And we stayed in touch. Thanks to the internet. And I just love. I love innovation and I love hearing about people trying try new methods of growing.

 

Jayson Sacco:

I have some friends that have a grow facility and I've gone over there just to learn what they're doing. This isn't the old days from the 70s where they throw a couple seeds in a field and come back in three months and hope they're there. This is they're tracking the amount of sun the amount of dark that they get there. And I'm going,  “Wow, this is crazy.” You know, I mean craziness. Good way, as he goes, I can determine I can get season I can determine exactly what this plants could have do and direct it the way I want it to direct it. And then I get the quality product that I want. And I was like, That's insane. I mean, just to watch the whole thing is, is really it. Like I said, it's not. It's not Cheech and Chong anymore. It's a whole new. It's a whole new industry. And it's really quite interesting to watch it grow.

 

Julie Caviezel:

Yeah, it's I think it's exciting for the states that are legal. I it's a very exciting industry. I hope we can keep having these conversations, dispelling some of the stereotypes out there and maybe educating people and I think that that is key. Because I think it it does society good. I would venture to guess that a lot of this is just because you know, drug companies kind of run the world and there isn't I'm sure eventually there will be interest for drug companies to invest in cannabis in a way where they can make their own spin on it or whatever. But I wonder sometimes about that.

 

 

Jayson Sacco:

So if I wanted to start to look at vaping is is the pen and the cartridges? Is the pen can be bought anywhere or do you generally buy those at the same place that you buy the cartridges?

 

Julie Caviezel:

I buy this one at the gallery because they make their own and have they they make their own batteries too in Michigan and I just like that. There's more quality control there. So I can't say per state what to advise but and then they generally are universal. So whatever company makes these cartridges, there's a separate, you can buy and they're all compatible.

 

Jayson Sacco:

Okay, that was my question is I don't have to go to the gallery as an example and buy cartridges, just from them?

 

Julie Caviezel:

Right, you could, it's all interchangeable. It's kind of a universal design from what I understand. So that that's what I did and I can just change them out. So if I it's kind of funny, I'll show you this. I mean, your listeners won't be able to see it but you know how you can go in these pottery studios and paint your own you know, pottery and then yeah, put in the camp. So I made this.

 

Jayson Sacco:

Oh, cool. What she's holding up as a small little, almost like a serving tray. And I can't tell if it's impressed in the bottom of it or just painted in the bottom of it is a marijuana leaf.

 

Julie Caviezel:

I painted it free handed, it a little pot leaf. It's not your, you know, I went with my kids and actually met my daughter's friend and her mom there and I'm just not shy about it. I'm not also in your face where I'm wearing pot leaves and like making a bunch of weed all the time, but I'm also very open about it. So anyways, I made this because when we have guests over, I like to be able to serve different options and so on my vape pen I'll take off my daily cartridge that's just, you know that I do throughout the day because that does not get me high, but then I'll maybe put a stronger one on for a guest if they want one or I'll offer you know, I love pre rolls that come conveniently packaged, you can also get them I think I got this one in Oregon. They come all packaged separately, just little pre roll joints, and they're usually not very much there may be five bucks each and most of those are actually.

 

Jayson Sacco:

Well just so the listeners know she Julie is holding up these tubes. They're just a tube like what a cigar would come in. Like if you went to a high-end cigar store and they put the cigar in a plastic tube when you left. And so inside of that is a single joint.

 

Julie Caviezel:

Yes, I'll take it out.

 

Jayson Sacco:

Very cool.

 

Julie Caviezel:

Okay, so I opened the two, they're they're childproof, so they're kind of hard to open, especially if you have arthritis.

 

Jayson Sacco:

I'll never get into it.

 

They're almost, right. It's kind of hard sometimes to have my husband open up. We don't do these very often. This is more like if we're at our cabin or just want to prefer to before bedtime. Like how you use it to sleep. These are great for extra just kind of maybe knock you out or but but they're also fun socially. This one is a really popular strain called wedding cake.

 

Jayson Sacco:

Oh, yeah.

 

Julie Caviezel:

Yeah, it's nationally recognized legally and illegally. It's just a popular strain and I like it. It's great for you know, if you're just kind of with friends or whatever, I wouldn't be able to do it throughout the day, my brain would not handle it well.

 

Jayson Sacco:

If I tried to do Gorilla Glue through the day, I wouldn't make it I just go to sleep. But if I do a little bit of that wedding cake in the daytime, it's fine.

 

Julie Caviezel:

Okay. Isn't that interesting? Okay, so for me, it would make me super high.

 

Jayson Sacco:

Oh no, I'll be high as a kite. But I wont be wanting to sleep.

 

Julie Caviezel:

Yeah, so that's interesting that you say that. So, wedding cake is satieva from what I remember. Let me see if I'm correct on that. So there's indica and then there's sativa is kind of the more energetic high and had high a little bit indica tends to be more of like a commune or they the way that you can remember it is indika into couch kind of more like a body high and you feel a little more relaxed. So for some people like this one is called mango haze. It's a CBD but it's a city VA. This is going to make you and let me see and what I love when it's legal. Is it prints out, right. Yeah, I love that. You see the exact percentage THC versus CBD E, but so the city is going to make you more high. And that's not necessarily what I'm looking for on a day to day basis. I don't, I would not function very well as a mother, so that's not my go to.

 

Jayson Sacco:

That brings up a great point. Because as a parent, yeah, even if you remove all the bad stuff that we're taught the default stuff, there's still that item that I'm a parent. I have these children here. They may see me on the vape I'm probably not going to do one of those in front of them, but you could, how do you explain to them what it is and what it isn't? Not that they shouldn't try it when they're older. I have no problem with somebody older. It's my issue is and again, this is going to be a critical because as a kid in college, I party like a rock star, but your brain doesn't really fully develop until you're 25-26 For some people in their 40s, you know, but so you want your child to at least hold off as long as possible. I don't even know what the legal age is for it. I'm assuming

21?

 

Julie Caviezel:

21 in our state. I think that's the case elsewhere where it's legal, but I haven't referenced that so I'm not 100% Sure. There is always the argument of lowering the age for alcohol and or wanted to 18 or raising because we are sending, you know, Ichiro boys off to war, but they can't go buy a beer.

 

Jayson Sacco:

Right.

 

Julie Caviezel:

That's a whole other topic. But yeah, I'm, I think with the marijuana especially, yeah, you're right with the brain chemistry and what not. For most people, it is wise to wait till you're older. I don't know if that's realistic.

 

Jayson Sacco:

Yeah, I mean, trying it as one thing, a daily use. And, again, if it came down to an issue where I don't have a 12 year old child, this time, but if I had a 12 year old child, 14 year old child that came to me and was dealing with ankylosing spondylitis was diagnosed with non radiographic whichever, I would 100% be open to them getting a vape pen and using it when they're with me, obviously they wouldn't be allowed to use it through school and we'd have to come up with a alternative or some type of plan for that. But knowing the amount of pain that I went through, because there was no medications in the 80s, I don't want anybody to deal with that. And if there's some way to help relieve some of that via biologics via micro dosing via some controlled use of n Said's, then let's hit it on all fronts instead of just let the poor person suffer.

 

Julie Caviezel:

Right. I agree, I think and also it's, you know, for me personally as a mother because I have three kids their ages are my daughter's almost 16, my middle daughter is 11 and a half and then I have a 10 year old son and so I am super open with them. I always have been.

I've never told them any lies really; I try to be really honest. And so even when they were little, and they would ask me about Santa, I'd turn the question back on them. Well, what do you think? You know, or I've never been like a Easter Bunny or leprechauns or I just don't I always want my kids to know I'm being very real and honest with them. Obviously that kind of sounds like a buzzkill. Because I'm sure the magic of childhood is Easter but they did experience that up until a certain point when they were old enough to figure it out. I just let them figure it out. But anyways, I am open with them. I have let them know I've been diagnosed with this disease. It is very painful. I've been prescribed a drug that I have a lot of potential very harmful side effects. I'd like to try the path of least resistance first. So I very open with them. I do it in front of them. They know that I do it for pain and anxiety and there's no stigma. And they're, they're free to ask me questions. And my daughter, my middle daughter has signs of arthritis presenting already, especially in our knees in So, so my daughter Lola uses this cream regularly on her knees where she presents most of her pain and inflammation. And she'll ask for it. She actually has her own. We keep it in the house upstairs and downstairs and it is highly effective. Again, no, hot, there's no high there's no psychological or psychoactive repercussions, but my kids are starting to connect cannabis use with pain relief in a healthy way. Right. And I think that that's the conversation to have with your kids. You know, sometimes I'll take Advil, I try really hard not to take it regularly because I don't want to damage my stomach or my liver or whatever over time. And so that's kind of an emergency basis. And I'll take a couple Apple here and there but from my health, I tend to rely more on cannabis products because there's there's no side effects. And I'm trying my best. I want my kids to see mom is trying her best to be as healthy as possible and choose a more natural route. They begged me not to go on humera yet, because they see the ads and it scares them. But um, and I am in an increased risk group for some of those potential side effects with humera. So I think my kids appreciate that. I'm trying cannabis first. So that's been our conversation. There's no stigma in our home about it because I'm just super open and they can ask me anything and I just it in my room or up or away, I try not to have it out.

 

 

Jayson Sacco:

It's not like the kids come home from school and here's some Oreos. Here's a glass of milk. And here's a blunt, you know, being a responsible person.

 

Julie Caviezel:

Right.

 

Jayson Sacco:

You know, and I, I never quite understand that thought process. Here, when it was legalized in Michigan, the local town council said, No, we're not having any. We're not going to allow it in the city to be sold, because it gives more access to the children.

 

Julie Caviezel:

It doesn't. There's so strict you have at least in our state, when you walk into a pot shop, there is a security person there at the front desk, sometimes it's in a separate little kiosk or little waiting room. I mean, they're it's very secure. You have to provide her ID, they scan it or whatever, and then they let you in. It's not some free for all where all these kids are I've never ever seen anyone in any pot shop that isn't an adult and is you know, and you're gonna get all sorts of people, let's be real, but I think people like in your city council or in their mindset thinking, a specific type of person. They're not thinking of someone like me. You would want someone like me in their town shopping.

 

Jayson Sacco:

Yeah, well, we'd want I don't care what type of person you are, short of a criminal.

 

Julie Caviezel:

Right.

 

Jayson Sacco:

But if you're coming into the town, the chances of you using some other service in the town, a certain percentage of something is better than 100% of nothing.

 

 

Julie Caviezel:

I agree.

 

Jayson Sacco:

Yeah, and so if the town were so chock full of business, and every storefront was full, and there was just no other room in town, then I would say, Okay, you've got a legitimate reason to say we don't need it because we're running on all eight cylinders as it is.

 

Julie Caviezel:

Right.

 

Jayson Sacco:

Let's face it. We're not, we're running on maybe one and a half two cylinders. It's it's a hurt area. And so the tax revenue would, you know, we can't because we don't have anything here in the town, we don't get any of the tax revenue, which makes sense, which could have gone to help service and fix the roads name, it could have gone for a number of things. Maybe though, maybe the restaurant has to pick up a couple extra waitstaff to help cover the extra customers. Maybe the gas station has to hire another one or two people for the night shift or the day shift. You know, there's people out there that want part time jobs due to children due to spouses due to whatever maybe the McDonald's has to hire a couple extra people it it just domino effect as you go along and it blows my mind is should business have a free rein to do whatever they want to do? No, but should a city stifle a legal business because they don't like it? No.

 

Julie Caviezel:

They're being, it's just they're creating See if notion of marijuana in general? Well, a lot of it is just so it's back to the reefer madness mindset and it just needs to be dispelled.

 

Jayson Sacco:

Basically in our county in our city, it was a about a middle of the road. 50% said no, 50% said yes. So their reasoning was, well, 50% of the people said no. I said, when are they more important than the 50% of the people that said yes?

 

Julie Caviezel:

I agree with you.

 

Jayson Sacco:

You know, if they don't like it, guess what store they don't go into. It's very simple.

 

Julie Caviezel:

Given a trial basis, for goodness sakes, like give it a year and seeing what are statistic what's going up what's going on? Is crime going up it or is it the same? Or are things better are maybe doing a little bit better? Like why not at least try what do they think is going to happen? Like, I think it's a huge missed opportunity.

 

Jayson Sacco:

Very much so so with that said, I also want to talk a little bit about you Instagram page.

 

Julie Caviezel:

Okay.

 

Jayson Sacco:

And there's some things you've said on there. One of the things that I read the other day, I want to find it because it cracked me up.

 

Julie Caviezel:

Oh, Lord.

 

Jayson Sacco:

And just so people know you're a good looking woman, and you've posted some pictures and so that'll catch some people's eyes.

 

Julie Caviezel:

Yeah, I’ve gotten some flack for that, flack for the bikini pictures.

 

Jayson Sacco:

Oh, I didn't even see that one. But, the one I liked in this is probably more applicable to women understanding this than a guy. But it cracked me up because I can relate in the fact that I sat there the other day going, Man, it's easier to just throw on my athletic shorts than it is to put on my cargo. Even though I'm so lazy. I wear cargo shorts,

 

Julie Caviezel:

Jeans, oh the jeans one.

 

Jayson Sacco:

When it said it's like, it's like your sweat pants are the friends that lie to you and tell you that you look good even when you're looking like *bleep* you know? I just was like that #checkinwithyourjeans and that I was dying laughing when I read that even though again as a guy, it's not the same, it was hilarious.

 

Julie Caviezel

Yeah, I felt like during that time, I was so tired of seeing everyone. #COVID19 and baking the sourdough bread and the banana bread and putting on their sweat pants every day and like, to me, I think Yeah, I understand we're in this kind of apocalyptic time where it feels like Screw it. Let's just all eat ourselves into oblivion and put on our sweat pants and give up throw in the towel but to me, I just part of my goal or mission, if you want to call it that for my Instagram, my AF page is to try to inspire people to live well and that doesn't mean I'm judging the company. 19 movements as far as they're like, in the 19 pounds thing, but I guess, you know, it's we're trying to be thinking long term and how something like this affects our bodies. Don't Don't give up like don't don't I mean, like there is eventually hopefully going to be an end to this pandemic, and then what I mean, shoot, now's the time to probably invest in Weight Watchers and Jenny Craig or whatnot.

 

Jayson Sacco:

Right? And the other one that cracked me up was you did a post When did you do this back in April? And it's funny because it's the exact opposite of me. Talk about it. And I am a #saltwatergirlatheart. I have to be a freshwater even though I grew up swimming in it. So I'm the exact opposite. I live near Lake Huron; basically, I'm just a couple of miles away from it. Well, I'm like; there are no whales. There are no sharks, there's no nothing. I know that its a fairly safe chance that when I enter Lake Huron, I'm still towards the top of the food chain. Whereas when I enter the ocean, I become a piece of the food chain if there's whales, sharks, anything like that, or so I just, those are a couple that over the over the last few months, and like I said, I've been following you and I've never reached out but I had read so much of your stuff. And it cracks me up when I go through it. And like some of the days you just doesn't matter if you're a man or a woman. You just read this stuff and it's like, yeah, that's funny. I can I can relate to something in that.

 

Julie Caviezel

Oh, good. I'm glad that made you happy. That's my, that's my goal. I think humor is super important, especially now adays but I use humor a lot as the pain management tool. Our bodies are kind of falling apart so to speak. So one of my best friends Her name is also Julie and she has a AS as well and it's been really hard on her body and we both find sometimes humor is what gets us through the day.

 

Jayson Sacco:

And then last, I'm not a cauliflower fan and you posted something and it was posted on my birthday. And it's about when I started following you. It was when I saw that within a few days of that and it was roasted cauliflower in avocado sauce, or you know, have a drizzle with avocado oil and then Frank's Red Hot.

 

Julie Caviezel:

Frank's Red Hot, I could eat a shoe with Frank's Red Hot.

 

Jayson Sacco:

I hear you, I use Cholula and that's a carryover from living in Arizona and Texas.

 

Julie Caviezel:

Great one, but try Frank's little pingyer, thicker.

 

Jayson Sacco:

So Julie, I can't thank you enough for your time. I think it's very important. I mean, anybody can connect with you on Instagram and your Instagram page is My Life with AS(@mylifewithas) And I think your your posts are fantastic, I was really pleased to hear how you address the vaping and the kids in the picture because I think a lot of people get concerned about that in one form or fashion.

Julie Caviezel:

Right, right. And that's a valid concern for sure.

 

Jayson Sacco:

And then your overall diagnosis and the steps you took to get that diagnosis with AS again it aggravates the heck out of me because mine was so different to hear people that went through such a long arduous process that really didn't have to be so I thank you so much for being on this. I it's just been fantastic getting to talk with you.

 

Julie Caviezel:

Thank you for having me. I feel really honored. It was fun having you reach out and invite me and I'm super excited. I think it's important. And to just keep having conversations and I certainly don't like dwelling on my AS but I I created the page as a way to connect with others like you and to spread awareness and and to try to inspire people even if they don't have AS and they have something else or you know, whatever it is that they're dealing with to just try to find a silver lining and things and if it helps even one person out there then that's fantastic. And you know, I will keep I'll keep posting my funnies and my little quirky way and hopefully it just maybe bring some cheer to people or makes them laugh or whatever it is.

 

Jayson Sacco:

That's just kind of my, it's the same thing. I started this podcast with no idea that anybody would even listen. And I've had feedback from folks like you with AS in and I've also had feedback from the forgotten one which is the spouses and caregivers of people with AS.

 

Julie Caviezel:

Yeah.

 

Jayson Sacco:

Like it or not, your husband doesn't have AS, but to a degree he does because he has to a watch you go through pain, and know that there's nothing he can do to correct it, fix it or alleviate it. Help you if you're not feeling 100% maybe it's not an even 50/50 of house chores on any given day. And, you know, as in any good marriage, he does things when he's capable of it, you do things when you're capable of it, things just get done. And so, the show is become really just as much for caregivers to listen, as it is for the people with AS to better understand what they're dealing with what the what the person that they, whether they're a spouse or a nurse, or, you know, whatever is looking at because it's terrible when you watch somebody that's in pain, and there's nothing you can do.

 

Julie Caviezel:

Right? It's such a helpless feeling and I'm glad that you brought that up. That gets me a little teary. Because, yeah, it definitely affects your family and your loved ones and my husband has been really great about being patient and I think people tend to forget sometimes that I have it because I try not to talk about how much I hurt. Sometimes I have to remind my family you know, because I am super stubborn. I like to do all the chores myself and you know, my way is correct and everyone else sucks it back to me and or, you know, just but the caregivers, the family members, I think it does. You know, for me, I grew up I'm a child of someone who has a AS and the way that she dealt with it is different than how I've chosen to deal with it. But I know it very negatively impacted our family and I almost wish there was more acknowledgement like what you're doing right now acknowledging the family, because it hurts children. It hurts marriages

 

Jayson Sacco:

One thing I've tried to point out is I see a number of posts. And I didn't mean to drag this on longer, but I saw a person I've done an interview with. And she made a post on Instagram about how bad she was feeling and how guilty she was feeling because she couldn't do certain things with her kids. Yeah. And I said, Well, you know, let's flip that around a little bit because, and she's still extremely active, comparatively speaking. I said, Your kids are not going to know any different about who mom is, or who dad is. If you spend time with your kids, that is their normal there. They're not thinking, Oh, my friend Johnny down the street gets to do this. And as I grew up, I can remember when I, when my kids were younger, would come down and visit for the summer. I they were, let's say eight, six, and, well, no, it would have been, let's say 10, 8 and 6. We'd go to the grocery store and they would carry all the groceries and they would say, dad, we'll get the groceries and it was a game. And I was like, okay, and that I never thought that was bad. I never looked at that as Oh, that's a negative for them. It was just what it was. They never complained about it. And then we would put the groceries away together in the, in the refrigerator. And I can remember cleaning windows with them. And I would squirt the windows down in the lower section and let them wash them. And of course, family and where can I find them? Because I don't know that I could get them to do that now.

 

Julie Caviezel:

My kids, can you please help me with the groceries?

 

Jayson Sacco:

Ah,well, the deal was when we would go grocery shopping. I'd be like, you do want to eat some of this, right? They're like, Well, yeah, like, well, then you're gonna help carry it in.

 

Julie Caviezel:

All right. Yeah, I think this is brilliant. I'm gonna have to have my children with a particular part of.

 

Jayson Sacco:

But outside of that they knew in then from a whole nother standpoint, I was always one that as a man, you try to not feel less of. And for a long time I fought. If somebody say, Can I help you with that? No, no, I'm fine. I never want to be looked down on pitied anything like that. And finally I had a friend, she said, You know, when you're at a car at your car, and you're putting your groceries in the car, if somebody comes up and offers to help, she was let them. I said, but I don't want to look at and said, you're not. Now they get to walk away feeling like they helped somebody and that they did something good, and maybe pass it on and keep it going. I said, let them help you let them have that good feeling that they were able to do something for somebody. And I said, I never looked at it that way. So not that it happens a lot, but occasionally get somebody to say, Can I help you put your groceries in the car or something like that? Yeah. Thank you, I appreciate it, you know, and right. And I'm like, that makes a lot of sense that that person can walk away. How long did it take them? 45 seconds, two minutes, maybe, you know, two minutes to do something that would take me 10. And they walk away, saying, I did a good deed for the day, you know, pat on the back, so to speak, and I'm like, Yeah, I never thought about that. And talking with her was a lot cheaper than a shrink. So it made sense. And it came about to be something that I've just walked away and said, it doesn't make me any less of a person. By letting somebody help me with do something. It actually lets them feel like a better person.

It's a gift.

 

Julie Caviezel:

Yeah.

 

Jayson Sacco:

So with that said, again, Julie, thank you so much. You have a wonderful weekend. And I hope you have a pain free weekend.

 

Julie Caviezel:

Oh, thank you, friend. I appreciate that. You too.

 

Jayson Sacco:

You take care you.

 

 

Julie’s Instagram page – My Life with AS (@mylifewithas)

 

www.spondypodcast.com

 

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