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...
