Oct. 18, 2020

Lisa Marie Basile - Author and Ankylosing Spondylitis Advocate

Lisa Marie Basile - Author and Ankylosing Spondylitis Advocate

I chat with Lisa Marie Basile, author and Ankylosing Spondylitis Advocate. We talk about her journey with ankylosing spondylitis, her poetry that she writes (I even am able to read one of her poems), and he work with Health Union.

 

Staying Sane and Managing AS Facebook Group Usage – ankylosingspondylitis.net - https://ankylosingspondylitis.net/living/facebook-support-group-overuse/

 

All Lisa Marie Basile’s writings in ankylosingspondylitis.net - https://ankylosingspondylitis.net/author/lisamariebasile/

 

Personal Website - https://www.lisambasile.com

            -Included on this page are all Lisa’s social media links.

 

Luna Luna Magazine - http://www.lunalunamagazine.com


Transcript

Jayson:

Lisa, welcome to the show I just gave the intro about you and it's so rich and varied and your background is so immense. But on top of all those interesting and fantastic, great things that you've accomplished, you also have Ankylosing Spondylitis. How did you come across the discovery of Ankylosing Spondylitis? And is it something that ran in your family?

Lisa

Yes, well thank you so much for having me. I really appreciate being here. I was diagnosed in 2017. But I've been having symptoms for about a decade. And it does run in my family. My father has it, my aunt, his sister has it and we think that my grandma, who has passed now, had it. She probably had the worst of all of us, sort of in that, I think it really debilitated her. And then I probably have it worse than my aunt and my father. So it's definitely been a journey and just talking about it and, you know, researching, it's something I'm really passionate about. 

 

Jayson:

Well, of course, it you've got such a varied background in being published across all sorts of different genres. Primarily poetry, that's your what I can take, is your real love. But you also do a lot of writing. And that's how I met you is at ankylosingspondylitis.net. We both kind of work there on and off and you more so than me, you write a lot of articles for that website. What drives you? I mean, you're relatively new to the diagnosis compared to a lot of folks that doesn't make it good or bad. But what drives you so much to be such a giver as you go through your own journey with this?

 

Lisa:

Great question. You know, I think I love First of all, Health Union, ankylosingspondylitis.net they're such a lovely bunch of people, it feels like family at this point. For me, I think there's always been a part of me that wants to write to create, like a community or a sense of understanding of the self. And I guess for a long time, I sort of felt like, writing was my way of being in the world and that was my contribution. It was how I could help. It was how I could make friends, how I could understand myself and others. So it's just like, kind of my natural language is to write. So when it comes to pain or suffering, whether it's mental or physical, I just, I don't want people for so if I can write anything that just makes someone feel a little bit less alone, or at least as though their their thoughts are valid. I'm glad writing can enable me to do that. Because I think for a long time, reading helped me feel less alone. So I guess I just want to be what I was given, I guess, reading and writing when I was young, 

 

Jayson:

You do such a large amount of writing. And I find all of your articles very interesting. I've actually based several episodes of the podcast on your articles.

 

 

Lisa:

Wow!

 

Jayson:

I think this is really interesting, because I grew up before the internet developed and was diagnosed with ankylosing spondylitis before the internet. And I was just told you have this thing, good luck, and really wasn't told much after that, that's 35 years ago. You wrote an article that I think could help a lot of people and I'm going to have a link to it in the show notes. But I want to get some more feedback from you and it's called Staying Sane, and Managing AS Facebook Group Usage. That's one of the things I see people post stuff online. And sometimes I think you can't really attribute everything that goes wrong in your life to AS sometimes you can, maybe, but I see this constant usage, and how do you try to remove yourself when you're so prolific online, kind of keep saying,

 

Lisa:

Ah, well, when I was first diagnosed, I, you know, just being diagnosed in 2017. I still knew I had it before then, but I just, I couldn't afford a rheumatologist. So it was a lot of Internet stuff for me, like a lot of group chats, a lot of Facebook. Yeah, Facebook group use. And I remember in the very beginning, I was using it to, I was essentially driving myself crazy. I would ask about anything asked about any symptom, you know, read everyone's stories think they're going to be my own. It took a while for me to realize that it is very, very individual and that, you know, if someone is, you know, incredibly, incredibly ill, it's not necessarily reflect everyone else's past and likewise, if someone has an awesome journey, it's not going to reflect what everyone does look like and it changes every day. So I feel like right now I read the group you know, I can see when someone is just need a little bit of comfort. I try to add it in there, say something that say something supportive and take everything else with a grain of salt. People can say anything they want, they can this miracle drug, and this experimental setting or alternative therapy has cured me. And it's like, okay, you say that I don't need to take that into my brain. It's just a matter of building a wall this point because I was so gullible and influenced by everyone else's everything that I had to draw a wall. And now it's like I, you know, I post in these groups and I talk to people, but everything's with a grain of salt Now, even when I get advice from people in those groups, if the greater I have to do that, and I think everyone should do that, because you will throw yourself into a spiral thinking, Oh, my God, this is gonna be he or this drug is not gonna work, or this is gonna cure me. It's like, you can't go there and your mind.

 

Jayson:

Yes, I completely agree. I think that's probably one of the biggest things that when I see somebody new, come onto the forums, I try to really get into their brain that my journey is not your journey, I'll be happy to talk to you on your journey. But it it you might, you know, I see people that are 67 years old, they're doing yoga, they're doing great. And they have ankylosing spondylitis. And I see others like myself that have kind of fallen apart. And some of it is my own doing because I didn't understand what was going on. Some of it's just the way the disease struck me and, and we're all different. But we you have to like use it, you have to learn what to take and what to just kind of skip over and, and, you know, just kind of go from there.

 

Lisa:

Exactly. It's hard, because it's an emotional thing. But you have to like protect yourself.

 

Jayson:

And for everybody listening right now I'm going to have a link in the show notes to ankylosingspondylitis.net and it's going to have Lisa's page with all of her writings. So if you go right to that link, it'll direct you just directly to the writing. She's done on AS. But I don't want to focus on just that. You're a prolific writer, of poetry of short essays of all sorts of things, I'd love it if you would showcase for not only myself, but the listeners a little bit about some of the poetry you've written.

 

Lisa:

Oh, sure. So I was writing since I was a child, I studied writing and school, I got a master's degree in it, although I would not recommend going into debt for poetry. I, and I mean that I, my first love, it's my first language, I love that poetry can be so many different things. It can sound from poet to poet, it can encompass all the human condition and all the kind of like nuance and complexity of human condition. So I've written a few books of poetry, my last book of poetry is called Nympholepsy. It came out two years ago. And it's kind of an exploration of the kind of like, shedding of the old self and how we kind of grow into the new self. But yeah, I've, I've written poetry, I've read poetry all over the world at this point. And I'm back into it. Because Lately, I've been so focused on the nonfiction, so writing about s and other health stuff that I think I'm missing poetry and, again, so I have been writing a little bit about trauma, and also chronic illness and poetry. So I'm trying to see how I can talk about as the body and the trauma of the body and all the body kind of Thor's pain, and I'm trying to do something with that with poetry. It's hard because you're so beautiful. And this feeling is so ugly, but you know, I'm gonna, I'm gonna say I hope to do

it. 

 

Jayson:

Well, let me ask you, this could be a really dumb question. But again, I'm not a, I don't read poetry. Is there a niche? Is there a market for chronic illness poetry? Is that something or is that something you're creating?

 

Lisa:

Oh, no, no, there's there's definitely it's not a dumb question. And I would say that there's a lot of there's so many niches, I guess, the way of putting it, and there's certainly a lot of poets writing about chronic illness. I have a magazine called Luna Luna, that I run, and we publish pieces about chronic illness all the time, whether it's essays or poetry. And I mean, I just haven't really dabbled in it just yet. But certainly people have. And it's awesome. that runs the gamut of perspectives. 

 

Jayson:

What's interesting for the listeners, because you're not seeing what I'm looking at right now. But in the show notes, I'm going to have a link to Lisa's website in on this website. There's so much there that I haven't even scratched the surface of it. And it's broken down into topics, you know, the standard about and a diary. And I didn't even really look at the diary much. Is that something you update on a somewhat regular basis?

 

Lisa:

Yeah, that's pretty regular. Maybe every week, something, a few things go up and it's from all different people.

 

Jayson:

Okay, I follow you on Instagram. So I'm very familiar with the posts that you do there. But I really had never even thought to go to your website to look and see what you were posting there. It looks like some may be similar. Some may be different.

 

Lisa:

Yeah, exactly. So we try to publish a lot of people and voices But also, you know, I write for it myself too.

 

Jayson:

And with that writing, though, if there's somebody that's listening right now, and I guess it really wouldn't matter where they're at in the world, but if they're interested in poetry, reading poetry getting poetry published, that's something you maybe look for in Luna Luna, I'm not.

 

Lisa:

Absolutely, we generally have open submissions in the summertime. And then throughout the year, the editors, including myself, will just sort of open a short call for poach. So for example, about a week ago, I asked if people wanted to hand over poetry, about autism and poetry about chronic illness. Oh, actually, that will close and I'll do a call for something else. But yeah, we're always looking for new poets, and from around the world poets was marginalized back, put chronic illness like we would love it.

 

Jayson:

Now, is your poetry, as a woman, I'm guessing you mostly write from a woman's, you know, perspective point of view? Is it mostly on women's topics? Or is it kind of really generalized?

 

Lisa:

I would say that it got to feminine energy, but I don't think it's about women's experiences or topics necessarily I do. I write poetry is really about human experience. So even though it's filtered through the experience of being a woman, it's, I don't think it's, I don't know, I guess it's hard to talk about your own writing. But I would think it's got feminine edge, definitely more broad.

 

Jayson:

And Lisa, I'm going to read one of your poems here. It's a neat one. It's both of us are of Italian descent. So this is kind of a neat little way to, to look at your poetry, but I wanted to expose the listeners to some of your poetry, who might be like me kind of afraid and not know where to start with poetry. Maybe not have had even looked at poetry since high school. So this one is called 

 

Saint of Sea Change.

These days I am

blood-song

in this choir of ghosts

I have visions of ancestral cemetery, arabesque

and honey, tesserae of a thousand lives.

 

That we haven't all been so sick, so dead at sea,

in cathedrals, where we kneel to devils

because our hearts haven't been made whole.

I am so tired of the cycle

and so full of it. veined and spinal full of the cycle.

 

I could linger forever in this bloodwound,

that I would become patron saint of my own sorrows.

Praying at the altar of myself, I am the altar, and I am the prayer.

I see my reflection in this loop, my eyes and sepia belonging to a girl

who washes linen in the sea, who suckles limone and god.

 

I want to give my name a new day

& stand in our dark wound and touch it,

light it up by the fire of Etna. The zibbibo and pomelia,

children of children of children who made me

flooding the streets of heaven.

 

Have ever looked at the sea? It is full of the

drunk and the poor,

of names that get sliced by time and oppression.

It is so honest,

 

you cry into its open palms. It says you’re home.

I am opening wounds that have never seen the light

 

generations of clasped palms. I am speaking my name with the music of it. I translate a thousand waves cresting.

 

I am the poet. I am the line break.

 

Very interesting.

 

Lisa:

Thank you, I think you read that beautifully.

 

Jayson:

Well, thank you. When I read that, tell me what goes through your mind when you wrote something like this? Because it's both, you know, I can see this person, you know, on the shore doing these things, but it's also very dark in spots. Tell me what goes through when you write something like that poem? 

 

Lisa:

And for some of my recent poetry, I've been trying to explore the ancestral. So kind of dig in a little bit into my my family background, and in my family came from Sicily. They were poor, they didn't have much opportunity and like so many immigrants came over to the New York New Jersey area, just recently. So it was just my grandparents who were, you know, from Sicily and Calabria. And, you know, reading about Italian immigration and how Sicily differs from Italy and all those cultural differences. And I've just been thinking about how many people have been forgotten or cast away, or how much they struggled and how much they turned to God for hope, and maybe still struggled after that. So it just kind of wanted to write a poem that embraced all that beauty of the Italian culture, but also the suffer and hopelessness that some people may have felt and I know some of my family Yeah, I try to, in my poetry, I try to really create like a lush sense of emotion. So that's why it's so I guess dramatic.

 

Jayson:

It's just like, if you were painting a picture, you're not going to paint everything in one tone, you're going to use all the skills that you have to paint that picture. And that's what you're doing here is you're layering, you know, you're letting me see this lady by the ocean, but you're letting me see some of the trauma and some of the issues she's dealing with on a mental side. I don't know, I thought it was really good. And I'm, I'm not a poetry person. And I don't mean that in a bad way. It's not that I don't like poetry. I have no exposure to poetry.

 

Lisa:

No, that's very fair. Thank you so much. I love the idea of layers. That's beautiful.

 

Jayson:

And when I say prolific writers, I'm telling folks go to Lisa's website and click on the Read Me tab. The items that will come up there that you have written about in your short life are just amazing, the just the depth of it. Like I said, I've read a couple of things and peeked around at a couple of things. But really, as a neophyte of poetry, you kind of get where you know where to start. So I think it's really a well laid out website. And I would encourage anybody that has desire to write poetry has written poetry, to reach out to you, whether it be through Instagram, or GS, your website, you're all over Facebook, you're all over the place. It's easy to get in touch with you.

 

Lisa:

Yeah. I would love to hear from people.

 

Jayson:

Thank you. Now you live in New York City, correct?

 

Lisa:

Yes, I do. 

 

Jayson:

How is that as a city for a person with AS? How is it easy to get around? Is that a challenge? 

 

Lisa:

That's a great question, because I've been thinking a lot about accessibility. So I'm really lucky and I don't know if the word is lucky. I'm privileged right now, in that I am very mobile, I can walk on my own, I don't need any assistance, that although there are some days where the pain is too much, I know walking just doesn't feel great. And I can't do it for a long time, I have to give out many give out. So the city in general can be really tough navigate, I think with all the subway stairs, and I mean, you're going up and down, like 100 staircases everywhere of day, if you're going on the subway, there are elevator banks, but sometimes they're hard to find, to have to walk to them. So that's a whole different layer of issue. And then in terms of just the street, and let the rest of the city, a lot of places have some accessible entrances if you're using a wheelchair, but a lot. So really, it's like, on that just fundamental level, it can be kind of challenged sometimes. But just general, like New York City Life, when I was younger and had more energy and wasn't nearly like I am today, which is having fatigue all the time, New York playground, and it felt like this amazing thing where I could find all this opportunity. And now I've become a freelance writer. So I write in my house, so I'm not really taking part in that the, you know, sort of New York City lifestyle as much, nor do I really want to drag on my energy. So I think it definitely is a city that offers a lot, I can see good doctors here. There are a lot of doctors here. But then there are a lot of cool things here. Like I can go swimming if I want to because I'm in pain, and there's pools you can have access to. So just a lot here, but at the same time, not that I there's something to be said for having a similar pace of life when you're trying to manage a disease. And that's something I hope of in the future, I'll probably leave the sea. So it's a mixed mixed bag.

 

Jayson:

Well, I've got to believe that just about anywhere would be considered a slower pace of life than New York. Now, obviously, there's exceptions like la Miami, you know, those are going to be fairly similar. But yeah, anything outside of that and as a freelance writer who does, I would assume most of your stuff at home with very little meetings that can't be accomplished by a zoom interface. You could pretty much go wherever you want it.

 

Lisa:

Oh, yeah. And it's something I daydream about often. My partner Ben, he's in real estate, so he's pretty tired to the city right now, but is English and so hopefully, in the future, we'll be off to the other side of the pond. And that's actually cool for another reason, which is that I noticed that English people, English system is pretty like hyper aware of AS and they have a lot of resources for their citizens. So yeah, it's my dream to have just like a little garden and a country who knows AS.

 

Jayson:

it is, you know, having this show and talking and, you know, there's there'll be people from the UK listening and they do seem to have a bit more, that they're what I think they called the National Healthcare System seems to have a bit more information related to healthcare. And it's got to be partially based on the size of the country and be the structure that health care program. So it makes it a much easier way for a national system to push out or disseminate information and all the doctors pick it up verse here.

 

Lisa:

Oh, yeah, 

 

Jayson:

You know, you got thousands of doctors spread between thousands of clinics, and there's just literally no way to push out something from a national level easily. It can be done. It's just not easy.

 

 

Lisa:

Yeah, absolutely. It's much, much smaller, much, much, much.

 

Jayson:

If somebody wanted to start off, what would be the best spot to start reading what would be a good entry level reader for you, Lisa, what to get somebody started in your books?

 

Lisa:

If anyone's interested in beautiful language, I do tend to write with more lush language, other people on poets and writers more straightforward. If people are interested and writing that kind of add a little bit of the magic ritual, maybe a little bit of spirituality. That's where you might might find that in my reading and if people I think, want something very, very emotional, sort of confessional, and honest and vulnerable, I think, ready might suit I hope.

 

Jayson:

So Light Magic for Dark Times might be a good beginning spot to start for people to explore your writings?

 

Lisa:

I don't think that's a great spot. Just because it's such a specific book, that book is a book of practices that people can embrace when they're going through, like crisis or trauma. So it doesn't really include much of my personal writing. It's more geared toward the reader, but it is a great book for anyone who's going through something.

 

Jayson:

Okay, so that's really geared towards or around people that are dealing with trauma. So that's interesting. 

 

Lisa:

Yeah. 

 

Jayson:

There's such a specificness to some of your writing and things that you've done that is really, like I said, for a lay person like myself, I've read so much of your stuff on ankylosingspondylitis.net, that to go to the poetry side is a complete, like, shocker to me. Not in a bad way. It's just like; I sit there and go, okay, where do I go from here?

 

Lisa:

Yeah. Yeah, I totally understand. So it's a big gap. I love reading about Ankylosing Spondylitis. 

 

Jayson:

So, in your writing, you've really been kind of featured all over the place. What was it like to be in some of the things like Amy Poehler Smart Girls, Hello, Giggles, the pools and things like that? What? How was that working with all those different places to get recognized?

 

Lisa:

A lot of the time they reach out. And they just say, we're interested in you like to hear for me, some of the time, I reach out to different places, and I found them about a book or something and see if they're interested in collaborating. But most of the time, all of these people are like writers myself. So they work for these magazines, these publications, and they know what it is to be a writer. So there's sort of familiarity there. They know the kinds of questions they ask, they know how to talk about writing and so it, it's fun, and it's interesting, and it's like a little family. I'm always super, I'm always honestly surprised when anyone cares. So it's really, really, really cool that I got these opportunities. It's amazing. It's cool. It's crazy. It's my younger self inside me to be like, what? So I'm really grateful for it.

 

Jayson:

Oh, I bet that anything you get, anytime you put work out there, and hope somebody likes it, that's great. But then to get some feedback from peers or people that are digesting your topics, it's like, Okay, I'm not just doing this in a vacuum. There are people that are listening.

 

Lisa:

Yeah,

 

Jayson:

It’s wild and, again, for anybody listening, please go to Lisa's website(www.lisamariebasile.com). I'm going to have a link to it in the show notes. Last I wanted to touch some more on AS.

 

Lisa:

Yeah, 

 

Jayson:

With your development of it and knowing that you had something going on for the years prior to it. What have you found because you are in an area where there's just phenomenal access to doctors? What have you found out what how do you treat your AS what's been helpful for you?

 

Lisa:

Oh, it's been a journey. So about 10 years ago, I was getting you the itis all the time. I mean, it was truly ruining my life. I had no I you know, I was 24 I had no idea what it even meant to be like sick really. At that age, I was blissfully ignorant. I had never felt with a broken bone. I had nothing. So I honestly was still in that mindset of invincibility and I was getting a few edits and I just thought my first doctor said, Oh, it's contacts, you've been putting your contacts in too often just stop wearing them. Okay, so I take them out the Uveitis continued it continues for two or three years. Finally, the doctor is like, I don't know, let's get tested. Let's I think maybe Sarcoidosis, Lyme disease, I remember being tested for, yeah, it was all over the place and finally, my aunt who had eye cancer, who also has AS said, Let's take to a specialist. So she drove me to Philadelphia to, Wills Eye Center hospital, we finally got the HLA-B27 testing, it was clear that there were some autoimmune situation going on. And then I had a lapse in insurance. So I didn't have insurance for a long time and Uveitis went away. So I didn't think about it again. And then a few years ago, I was working in a corporate job, had good insurance again. So I decided, let's get this started. I was having horrible back pain, horrible fatigue, everything, everything was different. My life felt like it was falling apart and I was no longer the fun, energetic person I used to be. So I had an AS diagnosis from two different rheumatologists, two of the top hospitals in New York. One was NYU, and the other is the hospital for special surgery where I currently have my rheumatologist. And yeah, it was clear that it was AS and so for a long time, I managed with exercise and eating well and stretching. And then I put on Humira, which didn't work for me and gave me the shingles and it was just, I hated the singles, it was the worst. So I came off of Humira. That was two years ago. And I've been managing really well swimming with exercise, diet and CBD. But then recently, literally three days ago, I have chat with my doctor, again, about consenting, because I started to lose a little bit of mobility in my knee and my hip. So COVID threw me into a loop here, because I was swimming so often. And that was really keeping my flexibility and I think eliminating some of the inflammation just from moving and being so low impact. But you know, the pools all close, so my body's been struggling to kind of get that movement do feels right for me without a pool, which is a total glitch, you know, so now I don't have insurance again. So it's going to be a long road. I figure that out, figure out how to pay for Cosentyx and, yeah, so right now CBD and exercise is a super short answer.

 

Jayson:

Yeah, that's, uh, I've been very lucky my whole life to have had some insurance, you know, that has really played a key role in it. So I can certainly understand from your aspect. You look at a medication here in the States, what is it $3500 - $4,000 a month for Cosentyx. 

 

Lisa:

Oh, yeah, 

 

Jayson:

They do have the assistance program that's available. You know, whether you're in England, Australia, the United States. Those all have the biologic programs all have insisted the biologic programs all have some type of assistance program through through the areas, but I believe it's still capped at $15k - $16k. So you'd go through that in three months.

 

Lisa:

Oh, my God. I know. That's what my doctor said. Just, it's mental.

 

Jayson:

Has there been any change? Now, as you and I record this and for anybody that listens, 2,3,4 years down the road? We're in the hopefully the tail end of the whole COVID thing. Knock on wood. Has there been anything in New York going on that allow the pools to open back up? Or are they still shut down?

 

Lisa:

Oh, I think they're still shut down. I'm not sure it's like someone has a pool in their building. Maybe it's open but I don't think any of them are open. I thought a one is not allowed to be open. So there's really not much option so I'm I do a lot of YouTube videos. Easy standing, sitting. Mobility stuff. Yoga. Yeah. I mean, I just try to I try to just keep moving. 

 

Jayson:

Right? It's not easy, but it is what I think helps me and I did that episode a few back with both Geoff and Jamie from Yoga for AS.

 

Lisa:

That's amazing, 

 

Jayson:

They're pretty cool; they do YouTube videos, as well as Facebook live videos for live YouTube sessions. And I think they do some zoom stuff and I'll have a link in the show notes if you want to listen to that. But Yoga is something that I wish I would have discovered 30 years ago. I think whenever anybody is diagnosed with a chronic illness like AS, rheumatoid arthritis and ankylosing spondylitis, osteo, all of them. I think you should be given a prescription for meds, and if you want it, a prescription for a yoga class.

 

Lisa:

I agree with you, I completely do. You know, there's not enough talk from the doctor's end about what you can do yourself. It can't all be just medication, there has to be some self care to

 

Jayson:

Your writing and again, this comment is going to really be from the United States side of it in our medical care system. But it may be applicable where listeners are in other countries here. I'm very surprised that you mentioned you had a corporate job and you had insurance there. I'm very surprised those big insurance companies don't insist that exercise be a required part of the treatment plan that they don't run their own yoga classes. Could you imagine a large insurance company that says, hey, you just got diagnosed with AS, come over here to this yoga class, we're going to do real low impact yoga, we're going to talk to you about diet exercise. And it does two things, it gets the person active, and it gives them a social situation so that they don't retreat back to their house, lock themselves in eat, and make a potentially bad situation even worse.

 

Lisa:

Absolutely. I think it's a great idea, although I might have some controversial ideas. But I think that the insurance companies, I don't think they have our best interests in mind. I think that the maybe the industrials work there too. But in terms of company itself, like I said, they just want us to pay for the medication and not do anything else to help us. That might be negative, but

 

Jayson:

No, I've looked at it, you know, I looked at it not so much as companies themselves generally are, they're just an entity, they don't care, they don't care. It's all based upon the people internally. But when you look at a large insurance company, my point of view is not so much that they're doing it out of some altruistic feelings. They're doing it because they want to save money. And if I get you exercising, and I get you eating, right, and I keep you from doing bad stuff to yourself, it saves me money in the long term.

 

Lisa:

Right, I hope that we live in a society where people are, or companies and entities are interested in giving humans options, it would be great.

 

Jayson:

Yeah, I think they're starting in some ways to see that it's going to take a long time, unfortunately, you know, the United States healthcare system. Again, I don't want to bore people, but it was designed. And the way it's tied to your jobs here in the states is a result of World War Two, when wages were capped, and the only way employers could get employees was to start offering benefits, like health insurance, which really didn't exist prior to that. And so once all the soldiers came home from World War Two, and started to migrate back in the workforce, the health care tied to the Jobs was already factored in. And it was a done deal, and it just never got separated out. So it's been…

 

Lisa:

Fascinating.

 

Jayson:

It's Yeah, it's really only been this way for 60-70 years. It's not some long term. You know, prior to World War Two there, there was health insurance, but there really wasn't health insurance, not in the way we have it today. And so our current structure is a by-product of, unfortunately, World War Two. And will that change someday? I hope so. I think we're really, you know, it would be great if we could get our health care. I don't know what the right plan is. I'm not saying that, you know, any political parties got the right process, the right plan the right. I'm just saying it would be great to release ourselves as employees from being tied to a job we might not like, but we're afraid to go do something more creative, more technological, whatever it is, because we can't walk away from those health benefits.

 

Lisa:

Oh, my God. Absolutely.

 

Jayson:

I think that really puts a damper on the development of all sorts of things that could happen here in the United States, because very creative people are tied to jobs. They can't stand due to having to keep that healthcare. So that's my soapbox. I'll get off of it. It's not an endorsement of no political party. It's just it is what it is.

 

Lisa:

No, it is, it's a bipartisan comments, I think. And you're right. I think you're absolutely right. That's a soapbox. I would stand up any day with you.

 

Jayson:

I would say, what would have happened if Bill Gates or Steve Jobs wouldn't have left their job they had because of their health insurance? Where would we be now? Great. And how many other people are like that that are tied to jobs? They can't stand and but don't feel they can leave? So I don't know. That's that's my soapbox. I apologize. Didn't mean to go off on a tangent.

 

Lisa:

No, I think it's really fascinating. And I think it's that people are going to job so they can get their health care. And I think it sucks. Some people have to leave their jobs because they're getting so sick and they can't do it anymore. But then they lose their insurance. It's like a whole just multi-layered mess and it sucks. 

 

Jayson:

It is, It's It gets worse every decade it goes along to a point where you're not sure what the string is to pull to kind of unwind it. Where, where's that string in that knot of yarn? That's the right one to pull, or am I just going to pull and make it even worse?

 

Lisa:

Exactly, exactly, definitely what it feels like sometimes.

 

Jayson:

And again, I apologize. I know, we didn't start off talking about the US healthcare system, but it is such a big part of so many people's lives.

 

Lisa:

Oh, yeah. Definitely. Like I had mentioned it when I was talking for a reason, the insurance situation definitely has made the whole treatment of a US thing complicated. I think to myself every day that I mean, I'm 35 gonna be 35 in a month. So I don't know what the future holds. I don't know how bad things are going to get for me, for right now. Things are sort of manageable enough that I can manage that medication, but you know, I don't know what it's doing to the insides of my body. So it's insurance. It's just ever looming monster in my life that I have to figure out.

 

Jayson:

Well, you mentioned that you use CBD oil. And I know that's really a it's become such a Oh, just a general term. I was thinking more just this this like term that gets thrown out for everything but people don't understand what it is where it is. You got a big chunk of people that say oh, I don't want to smoke marijuana you got the other people say it's not marijuana. It's just this oil that comes from and yeah, there's just such a misunderstanding out there. Do you still take the CBD oil? What what type Have you found helpful?

 

Lisa:

Yeah, I'm I'm very passionate about CBD. I disclaimer, do not smoke weed. Don't like weed. I don't like being high. I used to smoke weed as a kid and teen as a younger person. And I don't like it. I don't like being out of control of my body. So for anyone listening who fears marijuana, you can know in your heart because I promise you that CBD is not going to make you and from a tried and true hater of being high. So that's why I know CBD is good, safe. So if you use CBD, I use something called full spectrum. It contains .3% THC, which is not enough to get you high by any means. It contains a THC just because it that boosts the effects that but CBD oil gives you and I buy it from a company called Blue Bird botanicals which provide batch test information on every single batch of CBD oil that they create, you can see exactly what's inside of it, you can read about all of the compounds that are inside of it. So I've been taking that for about three months for about 15 drops, three times a day. And I've noticed an improvement in my mood, and my anxiety and rationality and pain and mobility. And I do believe that works. I don't think it's one of the components in your mind. Psychosomatic thing. I don't want to see you. Yeah, something like that. So I don't think it's just me tricking myself into believing it works. I think it really work. And yeah, 

 

Jayson:

Placebo. 

 

Lisa:

Thank you. So I'm health writer by day. That's my like main source of income. And I've done tons of research on CBD and inflammation. And it definitely helps. There's a big study that's going to happen on CBD and Ankylosing Spondylitis. I think they're looking to find their participants. So it's a good combo. And it's important, I think, I really, I really do love it. I really do love to know, how did you find out? 

 

Jayson:

How long did it take you to figure out that you needed say that 15 drops three times a day, because there really is no effective dosing guide.

 

Lisa:

First of all, to bottle 15 drops is one survey, but I started with seven drops, and it was working. And it actually was in the middle of COVID. And I had high anxiety. I was flaring from my anxiety. And so I took half of those because I was sort of scared. I didn't know what CBD you know, but it was due to me. So I just took half the top notice at work. And then my flares got a little bit worse later on and I I doubled the dose to 15 drops. And it's been good. I mean, it's not curing my Ankylosing Spondylitis, but it definitely keeps the edge off. It keeps me mobile; it keeps me at a decent level of energy. I do you believe it reduces inflammation, but at the same time, I would say you know, talk to your doctor, continue your drugs. CBD is a great tool. It's a great addition. I wouldn't say it's your be all end all. But it's made massive strides in my mental health, which affects my physical health. My anxiety is almost entirely gone. So that's something I think that's really worth it when if you if you get flare-ups tied to your mental state.

 

Jayson:

Interesting. I think that's the case. Key though, is it for anybody listening when you're going out to look for CBD oil, which, again, I'm gonna say just for the states, it should be legal in all 50 states, there's the like you said, there's a small amount of THC in it, but that doesn't make it a federally prohibited product. So if you're looking at least in United States, CBD oil should be available in all 50 states. The key is Yeah, it's got to be full spectrum got additional spectrum?

 

Lisa:

No, I was just gonna say there is THC free CBD, as you probably know, but it is that .3% THC that they say creates what they call an entourage effect, which is the full effect of CBD, it kind of pulled in all of those, like helpful healing compounds. So yeah, full spectrum. Definitely,

 

Jayson:

that little bit of THC is like you said, it's not enough to get you high, it does appear to be the key that is needed to unlock that CBD to let it do its full job.

 

Lisa:

Yeah, that's a great way of putting it.

 

Jayson:

Because I know there were some products early on in the CBD revolution that that were down to like .01%, or, you know, the minimum, they could squeeze everything out of it. And through the studies and through interactions with customers, they found that that might not be the best way. And I think those were, when you're not into a full spectrum, CBD it was eliminating certain things. So there's a number of companies out there that sell CBD oil in both the states and other places, make sure it's full spectrum, make sure that you can look at the ingredients, any testing anything, if it's not showing you those items, if it's not showing you the testing, even down the company that I work with, I think does it all the way down to the batches. So you can look at Yeah, you know, the medical testing for each batch. And then you have to just experiment after that. As Lisa said, she took seven or eight drops what it was, and now is up to 15, you might start off at 15 and go down to seven I you have to experiment with it, unfortunately. So it's it's not something as far as I can tell that you experiment with for two or three days and decide it's you need to commit for at least a month to see possibly results.

 

Lisa:

Definitely. There's there's a company I work with that I use gives a set of three different CBD oils, and each of them have different make and model. So for example, I used one that included frankincense and myrrh, which are, you know, two compounds that are supposed to be great for inflammation and arthritis. And I didn't notice the difference. And in fact, I feel like it made me feel kind of off kilter. So after that month, I knew that wasn't my thing. But the other two oils that came in this kit for trial love them; they make me feel awesome, super happy, super calm. So yeah, I do believe like, as you said, trying testing it, giving it a minute to see if it works is so important. 

 

Jayson:

You got such good writing and when you go to explore the link for Ankylosing Spondylitis, dotnet for leases writing, there's just there's links after links after links through the entire article. And when you click on one, whether it go meditation or her medication links, it'll just link to more stories that she's written. So you really can go down a great rabbit hole to learn. And I think your writing is very unique because you have tried a number of natural remedies. You've written about that. Both the good, the bad, what you've encountered what you hope to encounter and what you didn't encounter. I think that's very valuable for people to read as well.

 

Lisa:

I'm glad. I'm really glad I want to help people.

 

Jayson:

Last but not least, because I know you've got a busy day, and I appreciate the time, you've got both in the shownotes. I want to have links to your Instagram page, your Facebook page, and you're active on pretty much not maybe regularly but I see you right across a number of the Ankylosing Spondylitis forums on Facebook quite often. So you're out there and easily accessible for people to talk with you correct?

 

Lisa:

Absolutely. I would love to talk to people, especially anyone who's like newly diagnosed or has some questions. I'm always happy to help.

 

Jayson:

Great and anybody has questions on submitting poetry to you. On Lisa's website, there's a Contact link, follow that so you can get in touch with her. And Lisa, I'm very, very thankful for your time. It was a pleasure talking with you.

 

Lisa:

Oh, it's been a pleasure talking with you, too. I'm so grateful that you took the time to talk to me about ALS and my writing and just introducing me to your listeners. It's been really, really nice. I love your podcast. I think you do such a cool thing and love the range of topics you encounter and I'm really, really happy to be here.

 

Jayson:

Well, that's a scatterbrain mind just never focusing on one specific topic long enough.

 

Lisa:

I think I’m similar too.

 

Jayson:

I love it. I really wanted people to understand that there's so many layers to you. I've known you from the Ankylosing Spondylitis dotnet side the more coworker type side and the very specific medical writing, that I've never really spent a lot of time getting into your poetry side. And I think I'm going to spend a bit more time on that side because it's just so varied and so interesting. And I hope people will take that journey as well. And then let Lisa know, via Instagram or Facebook or wherever, what you're reading what you like, what's your thinking? And, you know, I just think there's so many just cool things out there that even though we might have a chronic illness, it doesn't mean AS limits us. It doesn't limit your mind doesn't limit your creativity. It doesn't limit what you can go and do. So I want people to focus on that.

 

Lisa:

That is a beautiful message. I completely agree with you. That's honestly, that's the best way of summing it up. I agree. We can all be creative and beautiful, and we're totally enough already. And this disease makes it challenging, but it doesn't, doesn't kill who we are. Hopefully it brings out a different part a better part, a more introspective part. So anyway, I really appreciate your time. 

 

Jayson:

Lisa, I thank you so much. And I look forward to talking to you in the future. 

 

Lisa:

Me too. Jason. Have a lovely day. Thank you so much. 

 

Jayson:

You too. 

 

Lisa

Okay, bye bye.

 

 

Staying Sane and Managing AS Facebook Group Usage – ankylosingspondylitis.net - https://ankylosingspondylitis.net/living/facebook-support-group-overuse/

 

All Lisa Marie Basile’s writings in ankylosingspondylitis.net - https://ankylosingspondylitis.net/author/lisamariebasile/

 

Personal Website - https://www.lisambasile.com

            -Included on this page are all Lisa’s social media links.

 

Luna Luna Magazine - http://www.lunalunamagazine.com