Summary:
Content / trigger warning: brief discussion of mass school shootings
Learning to thrive with chronic illness is a marathon, not a sprint. Cheryl and Gittel discuss coping through unlearning toxic positivity, confronting ableism, and adapting though accommodations.
Gittel shares what’s in her coping toolbox for life with ankylosing spondylitis, from exploring the benefits of medicinal cannabis to getting support in Rheum to THRIVE. Becoming a “life hacker”, learning acceptance, going with the flow, and letting go of control can help you find joy despite pain, one moment at a time!
Video of discussion
Episode at a glance:
- Journey to diagnosis: After 15 years of chronic pain, Gittel was diagnosed with Ankylosing Spondylitis and Crohn’s disease. With diagnosis came a combination of emotions: validation that something was wrong, sad that it wasn’t something acute and fixable, and empowered with information that she could research. She learned to adapt and ask for accommodations without shame.
- Gittel’s coping toolbox: Understanding and unlearning toxic positivity, confronting ableism (including internalized ableism), and building health literacy.
- Medical Cannabis: Gittel has experienced pain relief, appetite stimulation, and mental health benefits from medical cannabis, which can be injested, topical, or smoked. Her favorite medicinal brand is Level.
- Getting support: After trying individual therapy, Gittel found Rheum to THRIVE and felt seen and heard with multiple people who “get it”.
- Finding joy despite pain: One moment at a time, my now is not my forever.
- Best advice for newly diagnosed patients: Be patient with yourself! This is a marathon, not a sprint. To me, thriving with rheumatic disease means becoming a life hacker, learning acceptance, going with the flow and letting go of control
Medical disclaimer:
All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Episode Sponsors
Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now!
Speaker Bios:
Gittel Aguilar
Gittel is a 34-year-old daughter of immigrants from Central America, who was born and raised in downtown Los Angeles. She is a “forever teacher” who is no longer in the workforce due to her diagnosis of ankylosing spondylitis (among other comorbidities). Currently, she is riding out the pandemic at her parents’ and is learning to manage her illness as best she can—one moment at a time.
Cheryl Crow
Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Links to things mentioned in episode or additional listening
- Previous episodes about cannabis
- Gittel’s links
- Instagram: @gittel_gt
- Cheryl’s Arthritis Life Pages:
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl:
Hello, I’m so excited. I am here with Teddy the dog for those watching the video version. But I’m with Gittel and she is going to share her story living with ankylosing spondylitis. And I’m just really excited toa delve into it. You might recognize her name because she has been on a past episode that was actually an Instagram live that I repurposed into an episode. But why don’t you go ahead and give a quick introduction to you, like where you live, and what is your relationship to arthritis?
Gittel:
Okay, so my name is Gittel, like Cheryl said, I also go by GT. So, I have both of those. I am from Southern California, born and raised in downtown Los Angeles, which a lot of people are like, I didn’t even know you existed. And it’s like, yeah, we’re here, for sure. And I have ankylosing spondylitis which was diagnosed when I was 30. But symptoms started presenting when I was 15. So, I’ve had, I’ve lived with chronic pain since I was 15. So, since like, 2003.
Cheryl:
Wow. Yeah. And yeah, what was your, you know, I call it the diagnosis saga. For some people, it’s a short saga, but for most it’s a long saga. So, yeah, let’s jump into that.
Gittel:
Yeah, I’m like, I feel like it also depends on age in terms of what the saga looks like, what medications and treatments and stuff were available when they, yeah. So, mine starts when I was 15 with random pain in a classroom. And then, later, if you skip a few years later — oh, I got it into my head that I really wanted to be healthy. And a friend of mine told me I had a runner’s body. And so, I was like, running, hmm, could be. So, I decided to try out for the cross-country team. And within two weeks, I was in unbearable hip pain. And it was really bad. And I didn’t even make it to finish conditioning with the cross-country team to even be part of the team because the pain was just, I couldn’t even — I was limping everywhere at this point. I went from not doing any exercise to running a mile in like two weeks, you know, so that was a lot for my body. And so, now, having a vocabulary for it, I can say, “Oh, I activated a flare back then.” But I had no idea that that’s what was happening. All I knew was I was in really bad pain. And I had no idea what it was. So, I had numerous X-rays done, like countless X-rays done. Nothing ever showed up on X-rays. And then, it wasn’t until I was a student at UCLA — go Bruins — and I literally walked into the Ashe Centre, which is our medical center, and demanded an MRI. I said, “I have pain, I’ve had lots of X-rays, we can’t figure out what it is. I want to know what it is. I need an MRI.” And I don’t even remember how I got MRI stuck in my head. But all I knew was like X-rays wasn’t showing anything. Obviously, I’m in pain, there’s something. And they did the MRI. Oh, and before they even did the MRI, they’re like, “Well, you’re in pain. Let’s prescribe you physical therapy.” And so, that — I actually started physical therapy, is probably my longest relationship. Because I started that when I was 18. And I started it, I’m still literally Facebook friends with that physical therapist that I started with. Yeah, at UCLA. And I remember direct messenger — I forget what, messaging her, whatever — when I finally got diagnosed being like, “I finally got a diagnosis!” because she was like, for four years, she was with me trying to figure out what was wrong, like, oh, maybe it’s this, maybe it’s that, and like giving me different exercises. But yeah, and —
Cheryl:
Wait, so was the was was the MRI at age 30? Or was that back when your MRI was back when you were —
Gittel:
The MRI was back when I was 18.
Cheryl:
Okay, and that didn’t show anything?
Gittel:
Well, not at first. And then, they did an MRI with contrast. And the contrast showed that I had a labral tear in my left hip. Okay, they were like you’re gonna need surgery in order to repair it. And at that point in time, when I was 18, the technology did not exist yet. So, they would have had to do the invasive surgery of like, breaking me open and healing all that. And I was 18 years old who just got into college, and I was like, I don’t want to do that. So, I was like, well, physical therapy is helping me manage the pain and everything. And then, my physical therapist also said it would also be really good to strengthen you up before you do surgery. So, we decided to go that route. And because I postponed it at that point in time, by my senior year of college, the technology had advanced that now it was arthroscopic surgery, so they just had to make a little incision, feed in the cameras, sew up the labrum tear, and that was it. And I thought that was going to be the end of my pain. And I thought — all right, now I’m even tearing up, because I remember just like, “Oh, it’s gonna good. I’m not gonna have this pain anymore. And it’ll be a thing of the past.” And oh, my gosh, then I had to deal with insurance issues because I graduated from university and I had the insurance through the university, but now my insurance was changing at that time, pre-existing conditions were a thing. So, I was labelled to have a pre-existing condition. So complicated. And so, my hip, I didn’t get to do the physical therapy I was supposed to. And so, the pain came back. And I thought it was because I didn’t do the correct physical therapy because of the insurance and all of that. Still had no idea it was because of ankylosing spondylitis. So, all of that is just like the tip of the iceberg of my diagnostic medical saga. And I literally just did what I was telling myself, I was like, be mindful not to get lost in this story, because it’s such a long one. This is literally what I did with my students once, because they asked — Oh, because I used to be a teacher.
Cheryl:
I was gonna make sure. I kept thinking to myself, make sure to get that in there. Because it’s part of your identity and your personality. Yeah.
Gittel:
Exactly. I was like, and you need to understand why I talk the way I do. Go ahead. No, but yeah, and one time, a student asked me about this, and I just went into this whole diagnostic trauma saga, and I was like, talking for way too long.
Cheryl:
Oh, I have a 45-minute video on YouTube I made in 2019, when I first started my channel with Arthritis Life, and it is 45-minutes of me sitting on a bench with a little baby Teddy on my lap. On my piano bench, did I say piano bench, and just barfing out my diagnosis story. And mine was only three years. So, you know, believe me, we could spend 45-minutes on —
Gittel:
Entirely on just the diagnosis.
Cheryl:
Entirely on this. Yeah. But it’s such an important background to kind of understand. I think so many of us, so many people listening, will understand that experience of wishing that what you had or assuming what you had was an acute illness, that it’s like a mountain, you overcome the mountain, go back the other side, go on to live your life, as opposed to a life altering chronic series of mountains that you’ll be up and down, up and down, up and down, up and down.
Gittel:
Yup. That is literally so. I was a health teacher, also, in middle school. And there was a chapter on injuries and acute versus chronic. And I’ll always be like, you guys, this is my jam right here. I thought my injury was acute, but it’s not. It’s chronic. Let’s talk about what that means.
Cheryl:
That’s amazing that you gave — because I do think that like most children grow up with a real framework or schema for like, acute illness, we understand. We get an ear infection, take the antibiotics, it gets better. Or strep throat, or now COVID, you know, but well, now COVID has two elements. But there’s also the chronic, you know, long COVID that becomes a chronic illness. But I really don’t think we have a lot of like, anthropologically speaking, like a lot of like, kind of social scripts for understanding chronic. Anyway, but yeah, you and I are both really good at going on soap boxes. But no, you’re telling this pretty linear, I just want to make sure I understood where the MRI was. But so, then you went to physical therapy, pain came back, and you’re confused now because you’re like, but we did the surgery.
Gittel:
Yeah, I thought it was gonna be over. Why am I still limping around? Why am I having — why did my pain jumped to the right hip when I’ve always had pain in my left? And then, I was like, oh, it must be because of compensation because I’m putting too much weight on the one, blah blah. None of this knowing, no, you have a chronic condition.
Cheryl:
But technically, I mean, there are some athletes like, you know, cross-country runners who could have had that other path, right, where it was kind of, you said it perfectly. Sometimes when you injure one hip, you compensate with the other one, that one gets injured, and then it still is an acute thing that you fix. But it just wasn’t your destiny, unfortunately.
Gittel:
Nope. And then, in my 20’s, I did a Teach for America. And that’s how I became a teacher. And I was in the classroom for seven years. I call it my Harry Potter seven years of teaching. Even though I didn’t even make — I feel like I tripped at the finish line of my seventh year and those kids will forever, I will always feel like I short-changed that, you know, because I’m like you should have had a better year. But anyway, yeah, exactly my sentiment.
Cheryl:
You control the controllable.
Gittel:
Exactly.
Cheryl:
And you did what you could.
Gittel:
Exactly. But yeah, and during that time, and during college, I always had my seat cushions and accommodations and I always asked for modifications and I’ve had — we’ve talked about this in a meeting room before, but I definitely want to talk about it here, is just I had no shame. I was unapologetic about these things. Like, the seat cushions I got out a raffle at UCLA at my job. And it was one of those like, fan bleacher seat cushions, you know the ones? But I literally just took that with me everywhere. Like, I was like, Why do I just need this for the hard bleachers of a game? No, I need this for my classroom, I used it for graduation. When I go to Disneyland, I would take my seat cushion with me, you know, like, and everyone would always be like, “Smart. You have a seat,” because, yeah, I actually felt good about it. You know, I was like, “Yeah, I’m smart. I know what I’m doing.” Like, I’m taking care of myself, you know, look at these suckers on hard surfaces while I have my seat cushion.
Cheryl:
Yeah, that makes sense.
Gittel:
Right? And yeah, and even during teaching, like, straight out, I just, well, I can’t do that. Like, I’m physically unable to do that. Let’s figure out a different way that I could do that. And often it would be like, oh, they would assign a TA to my class, but I would be there for supervisory reasons, like stuff like that. It was always completely doable. And as we know, stress really activates a lot of symptoms and teaching, this is a very stressful job. Like, my line before all of this was, “Teaching is the hardest thing I’ve ever done, and I’ve had brain surgery.” Oh, yeah. ‘Cause I’ve also had brain surgery.
Cheryl:
Oh, yeah.
Gittel:
Yeah, that also happened while I was in my second year of college. I had two major surgeries my senior year of college, so.
Cheryl:
And what was the brain surgery for?
Gittel:
So, the brain was for an arteriovenous malformation. Nothing to do with the Ankylosing Spondylitis that I know of, or the Crohn’s that I know of. But it did answer the question as to why I always had migraines growing up. And it was basically that the blood wasn’t flowing through my brain the way that it’s supposed to; an artery and a vein were fused. And the scary part about this is that most times this, the AVM, is found in the autopsy. Like, after the fact. And they actually found mine before. And it was because I had a really bad migraine that I tried to do, you know, you develop all your tips and tricks and stuff that you do. And so, I tried to do all those things, and nothing worked. And in fact, that even got worse. And I was like, oh, that’s not good. So, my mom took me to the ER right away. And yeah, it was intense.
Cheryl:
Oh, my gosh. I’m so glad you got diagnosed with that and treated.
Gittel:
Yes, but that definitely was a — and I overcame it, you know, like the only thing that —
Cheryl:
Right, I’m a survivor.
Gittel:
Yeah, exactly. The only thing that I have leftover from that is I lost the use of my motor skills on my right side. So, I had to learn how to use my left side. So, that was another joke I would say in the classroom a lot is, “Ms. Aguilar is ambidextrous,” which means I can use both hands but poorly.
Cheryl:
[Laughs] Yeah, yeah.(Ad for Rheum to THRIVE)
Gittel:
But yeah, so, my life was a lot of adapting a lot of like, okay, this is coming out of left field, let me try and figure it out. Like, I feel like I — the quote that you put up, you know, I told you that I put up a bunch of stuff that you had put up for me. So, the quote that you had used for me is that I had done everything I knew how to do and I didn’t know what to do anymore, before I joined your group. And that’s basically because that’s, that’s the wall I hit. Like, I was like, I’ve lived with pain since I was 15. I know how to deal with pain. It’s getting to a point where I don’t know how to deal with it anymore. Like, this is — I got to a point where it was constant, where I was bedridden. It was a lot and too much and just any other way that you want to put it.
Cheryl:
Yeah, yeah. That’s a really rough — that’s a rough time. I mean, how else do you say it? Yeah.
Gittel:
And so, it wasn’t until I was 30. And I could no longer keep teaching. I had to keep calling out more and more, my principal and supervisors and other people had to keep covering my classes because I had to keep leaving for doctor’s appointments. And unfortunately, that was also the year of the — content warning for this one — but for the mass shooting in Florida. And here in California, we had just had the earthquake drills that we do in October, October 10th. And I had told my students that if in a real emergency, and they needed to get out of the classroom, they would have to tag along at the back of the sixth-grade teacher and leave me behind because I would not be able to leave. Like, I had an elevator key. I had to take the elevator. I couldn’t take the stairs. So, I was like, no, and they freaked out on me. And they were like, “No, no, no.” And they started like imagining new ways to like carry me out and stuff and I was like, ph, I don’t like where this is going. And then, combine that with the mass shooting and just, I became terrified I would be come the reason why, like, a student — it just, way became too much for me to handle. Yeah, so, like talk about like — it’s hard enough to try to be a disabled professional and to add all of these other things on top of it. So, I had to leave teaching by the, uh… I didn’t make it back from spring break, I think.
Cheryl
What year is that?
Gittel:
2018.
Cheryl:
Okay, okay. Yeah.
Gittel:
And then, so we know what’s coming. So, that was in 2018.
Cheryl:
Yeah, I just, I struggle with the same kind of — I think anyone who goes into the helping fields struggles with the same guilt. Like, I remember when I, I had had two acute health issues on top of my continued postpartum flare-up. And I had been working for a couple years after Charlie was born. And in an outpatient pediatric clinic, I got so close to the families I was working with. And I remember when that car accident was the straw that broke the camel’s back, like, and actually, little did I know, four months later, I was going to have a really bad food poisoning thing that was going to set off my gastroparesis again and lead to severe small intestinal bacterial overgrowth, all this stuff, deconditioning, losing weight, just horrible. But I remember, I’ll never forget the feeling of guilt I had leaving, even though leaving that job, even though now I can see so clearly that like, I could kind of hold it to — I could hold it together. Like, there was nothing unethical about like me working in the sense of like, the children were safe. But it was coming. I was using all of my spoons for that. I had none left for my baby, you know, my toddler, my husband, anything else. And it just wasn’t sustainable. So, anyway, sorry. I’m just thinking about what you said about —
Gittel:
That right there. That’s the Sesame Street word right there, sustainable. How can we make these things sustainable. And yeah, when you kind of get to a point where you’re like, this isn’t sustainable. Like, I’m not, this isn’t working. So, I left teaching; I became unemployed. And at that point in time, I was married. So, my husband took time off of his work through the Paid Family Leave Act, right. And it became our mission to just get me a diagnosis. Get me some treatments. Like, figure out something out.
Oh, because speaking of weight loss, I am not a big person. I am very small person. And I normally, like, my students always knew, they knew of hangry Ms. Aguilar, right. That if I was hungry, if I told them, “You guys, I haven’t had my lunch yet,” like, you would feel the classroom just kind of shift and get a little straighter and just like, “Oh, she’s not messing around right now,” you know, like, they knew. I’ve had students before, like, take out a banana from their backpack and offer it to me. Because they knew that it would just, they would have a better classroom experience if, you know?
My classroom, my drawer from my classroom desk was full of food and snacks and stuff. And my students also knew that if they were hungry, they could go in because it just, how are you — I can’t teach while I’m hungry. I can’t expect you to learn while you’re hungry either, right. So, yeah, so it was that. And in that year, I lost 10 pounds without even trying. That drawer started becoming dusty, because I wouldn’t take anything out. I realized I was going full days without eating. And I was like, oh, something’s wrong here.
Cheryl:
A lot of people don’t know that unintended weight loss and appetite loss are symptoms of rheumatic inflammatory conditions like ankylosing spondylitis, psoriatic arthritis, and rheumatoid.
Gittel:
Let me throw another one at you — night sweats.
Cheryl:
Yeah. Yeah. Oh, yeah.
Gittel:
Mm-hmm. So, that was happening to me too. And I was like, I don’t understand what’s going on with my body. Like, I’m used to using, I mean, I’m used to experiencing chronic pain. These things are beyond pain now. These, like, I’m having night sweats. I’m not eating; I’ve lost my appetite. And I’m a stoner. We haven’t even talked about that. Like, I smoke weed all the time. So, how am I not hungry? This makes no sense. And then, oh, because of the pain. I had started acupuncture and cupping. Because I don’t know about you, but I definitely got to a point where I tried anything and everything, right. So, I tried that one. And that was actually pretty useful for me, especially because that acupuncturist, I will forever be like, thank you. He was like, “I know that you’re complaining to me about pain in your hips.” At that time, I also had winged scapula and costochondritis. So, he was like, “You’re complaining about pain in your shoulders and your chest. But literally everything is telling me there’s something wrong with your stomach.”
Cheryl:
Interesting. He knew.
Gittel:
Yeah. And I was like, oh, I mean, I’m not eating like blah, blah, blah, and I’ve lost weight and I’m not trying. He’s like, “Yeah, you need to go to a stomach doctor, like figure that out.” And so, I literally He went to my primary care doctor was like, “I want to go to a stomach doctor.” I had no idea what they were even called at that time. And then, I go and they’re like, well, and I explained everything and he’s like, “Oh, you look fine.” Which, you know, “You look fine.” I walked in there looking fine and everyone’s like, “Well, we’ll do tests just to like, be sure, blah, blah, blah,” and then he comes back with, “Oh, yeah, looks like you have Crohn’s disease.”
Cheryl:
That is so bizarre that a gastroenterologist — I mean, who knows what their intention was when they said, “You look fine.” They might have tried, maybe they were thinking they were being comforting, but like, their whole job is to look inside of your body. Like, you can’t tell from the outside what gastroenterological like condition someone — anyway. So, Crohn’s, which is also an inflammatory condition. Yeah, so that was — you’re like me, you got a GI diagnosis before your rheumatic disease.
Gittel:
But it was kind of simultaneous because, like I said, at that time, my husband was like, “We are getting to the bottom of this,” solution oriented, figuring it out. And so, I also had, I started with the rheumatologist. And that one, he literally just put his thumbs, like, where my, the, like the top of my buttocks kind of area, SI joint kind of thing? And I jumped like, a mile in the air. And he was like, “Oh, you have ankylosing spondylitis.” Like, straight out, “Oh, that’s what you have.” And I was like, oh, I guess some doctors really can just tell by like, one little thing, but sure. And then, they did test some stuff to confirm it. But um, yeah, so that’s how I got diagnosed.
Cheryl:
I’m laughing because I’m like, yeah, that’s — so, what emotionally was the response? Was it like a mixture of a bunch of things?
Gittel:
Yeah. It was validation. Validation of I knew something was wrong with me. I knew I was having pains for a reason. And like, and it was back to the other surgery, it was like, I wanted it to be an acute injury. And I wanted it to be over and done with and I knew that it wasn’t. So, it was definitely one of those. It was a very validating experience to finally have diagnoses. Also, having diagnoses allowed me to start paperwork and start, like, actually having names for things, you know, as opposed to just like a blanket statement of chronic pain. It’s like, chronic pain due to ankylosing spondylitis. Like, that carries more weight. And yeah, I was able to start seeing more specialists and actually start a treatment plan. Yeah.
Cheryl:
Because that’s, I think so often people think, oh, my gosh, were you so sad — they’ll ask me a question phrased as if they’re assuming that I was so sad when I got my diagnosis. And I’m like, the diagnosis felt like you’re in a video game. And like, that’s the magic key to like —
Gittel:
To the next level.
Cheryl:
Yeah. I mean, I didn’t realize that that wasn’t the end of the game, right. The next level was going to have a bunch of more challenges, but it was like, no, when you’re so invalidated. And for me, again, it was only three years of struggling without a diagnosis. For you, it was, you had these little baby diagnoses along the way that then led to, you know, the major diagnosis. Sorry, not to call a hip labral tear a baby diagnosis. But what I mean is a non-chronic diagnosis leading, you know, overall to a chronic, I think it’s just good awareness for people to understand the emotional experience can be very positive in response to a diagnosis or just very mixed because you’re like, “Okay, this is validating. And this is obviously a big deal, given that there’s always specialists involved in my care now.”
Gittel:
Oh, yeah. And especially because it’s like, oh, now I have a word to Google. Exactly. And that’s, you know, goes back to my thing, always of knowledge is power versus ignorance is bliss, you know, and it’s like, okay, is this actually, is this knowledge that I find actually going to be empowering to me? Or is it going to be kind of paralyzing, and maybe I should get off of Dr. Google right now?
Cheryl:
It’s a mixed bag, I know. I sometimes think there was so much more I could have learned if I was diagnosed later than 2003 because the internet was not that big back then. There wasn’t a lot. There wasn’t even social media other than MySpace but there was a lot of rabbit holes I was spared going down, you know? But, and then, okay, I don’t know if it’s possible to like put your treatment journey in a nutshell because I do want to spend the majority the time talking about like coping tools because you are so eloquent with like — not to put pressure on you — but you’re very eloquent, in my opinion, about talking about the things that have helped you cope and talking about the emotional ups and downs. But I do always think people want to know like, okay, well, okay, what are the treatments, what are some of the highlights from your treatments? Like, what’s worked or not worked?
Gittel:
Okay.
Cheryl:
Sorry.
Gittel:
No, it’s okay. I actually literally have a note that I’ve written down of ‘Chronic Illnesses: What I’ve learned So Far’ because I do get these questions from people all the time. Literally, my own therapist was like, “I know someone who was just diagnosed with the same thing. Do you mind sharing some resources?” And I actually — I asked you, I was like, “Can I have your website information everything?” I gave her the information. Who knows if you’re gonna have a new person in your —
Cheryl:
Oh, that’s awesome. Word of mouth.
Gittel:
Yeah, exactly. But yeah, so I made this and honestly, I made this a while ago. So, I know I’m talking about like, perma-survival mode and stuff like that. I put down terms to know; flare, right, like, the vocabulary that it didn’t even have to talk about things. So, flare. Being a spoon, like spoon theory, right. Like, that opened a lot of doors. Ableism, learning about ableism. Seeing how internalized it is, and I turned it on myself. And oh, yeah. Oh, toxic positivity, is another one; it kind of goes hand-in-hand with that one.
Cheryl:
Yes, yes. And we’ve talked a lot about that in the group. What does toxic positivity mean to you in the context of chronic illness?
Gittel:
So, all right. I’m gonna use a metaphor. I hope not to get too lost in it. But I make no promises. Because, so have you heard that that thing of like, oh, learning to dance in the rain?
Cheryl:
Oh, yeah. Yeah, yeah.
Gittel:
Right. Okay.
Cheryl:
I used to have a poster in my room that said, it was like, a bunch of people with umbrellas. Because, you know, I live in Seattle. And there’s rain coming down. And there’s one person who took their umbrella down and is looking up and like smiling at the rain, and it was like, “Smile at the rain.” And I loved that. But now I, yeah, there’s a double-edged…
Gittel:
But now?
Cheryl:
Yeah, I mean, I still think — I have a mixed vibe about it, right. Because it’s not saying pretend that it’s not raining, right? It’s just saying, “Hey, can you take a moment to like, smile, despite the rain,” I like that part. But saying, “Hey, you should only live in a state of permanent bliss, because things could be worse,” or, you know, that kind of thing I don’t like.
Gittel:
Exactly. And that’s the part, that’s the part. So, for me, I like to say that before I was very steeped in toxic positivi-tea — you see what I did there?
Cheryl:
Hah, tea.
Gittel:
But because I would force myself to look for the silver linings in everything, you know, and it’s like, the sun is not shining, right. Like, and it keeps raining on me, and I’m cursing the storm, you know, and saying like, “Oh, one day the sun is gonna come back, and it’ll be there. And I just need to wait this out.” And, you know, like, grasping onto that positivity didn’t really help, you know? And then, turning it into that one of the like, “Okay, well, I know that the sun is gone for now. I know that it’s been raining, maybe I can learn how to dance in the rain kind of thing.” But then also the double-edged sword of that other way, you know, so I feel like chronic illness kind of allows us to peek behind the curtain sometimes, you know. And again, it’s that whole knowledge is power versus ignorance is bliss thing where it’s like, sometimes, actually, that knowledge is empowering. And you’re like, oh, it’s all an illusion of control. And then, other times, it’s like, oh, now I feel completely helpless because nothing’s in my control, you know? And how am I supposed to accept that?
Cheryl:
Yeah.
Gittel:
Yeah. So, it’s definitely been a major and a very steep learning curve when it comes to that, you know, and trying to — that’s another beautiful metaphor that I’ve learned for balance, actually, because it’s like trying to figure out the balance, learning of, thinking of balance more as like a dance that sometimes you’re in rhythm for, and sometimes you’re not, you know, sometimes you follow. Sometimes you feel like dancing and sometimes you just want to sit it out. Sometimes you’re fine with just listening to the music, and you don’t have to participate, you know, as opposed to feeling like, no, I always am like, on a tight rope and, and trying to figure out this balance, and I can never get off of here. And I have to make sure that my balance is correct for my mental health so that I can be stable and blah, blah, blah. And it’s like, that is just way too much pressure. And maybe it was motivating to me once upon a time when I was able to do it. But now that I’m unable to be on that tightrope all the time, and I do need to take a breath and just sit it out and just not for a little bit and just exist, you know. Like, it’s learning how much of those, that past mentality that I had, it’s just not beneficial to me anymore. Maybe it was once upon a time but it’s just not anymore, you know?
Cheryl:
Yeah, and I think when it comes to, it really comes down, in my mind, to privilege. So, it’s kind of like saying if you are privileged — so, let’s say, using an example, I’m gonna talk about health privilege in a second. But let’s first use financial privilege. If you’re privileged, financially privileged, and your parents pay for college, and you’ve got to, you know, your parents paid for everything during your summer break, and you got to do internships, and you worked really, really hard at those things, then it’s tempting to say — and then you get a good job, and then you make a lot of money. And you’re like, “Well, I worked hard. That’s what people just need to do, is just work hard,” you know, versus okay, yes, I want to validate that you did this — I’m saying this from someone who grew up in a financially privileged, like, I’m not talking about like, millionaires, but like, I’m talking about, you know, a comfortably middle-class environment, and my parents did pay for college, and I see now all those privileges I had. But when people don’t see it, like, invisible privilege sometimes. And they’ll say, like, “Well, that person who’s not successful, they just needed to work harder,” not understanding the privileges that allowed the person who’s rich now to succeed.
So, in the sense of health privilege, right, you’re like, if you’re already healthy, and then you’re like, “I eat well, and I exercise, and that’s why I’m healthy,” it’s like, you get credit. And you should feel proud of yourself and happy that you eat well and exercise, and you take care of your body. But there’s a degree that’s outside of your control that’s enabling you to sustain that level of health that other people through no fault of their own, you know, I was so healthy before I got unhealthy, you know. I never touched illicit drugs or alcohol. I mean, we both joked in the in the Rheum to THRIVE group that I’m like, the poster child of the DARE program, DARE to keep kids off drugs in the 80’s and 90’s. It totally worked for me. I was like, “I’m never gonna drink alcohol. I’m never gonna do drugs.” And I’ve always learned to be a little bit more, you know, nuanced in terms of like, understanding that it’s not like if I have one sip of alcohol, I’m not going to like, you know, die. But the point is that it’s easy to think that your positive attitude and your manifesting is the reason things are going well in your life when you have all these invisible privileges that are that are enabling it. So, anyway. Soapbox, soapbox.
Gittel:
Exactly, exactly. And I’m about to get on my own right now. Or I’m like, oh, another metaphor I have that I think you’ll really appreciate is steamboats versus sailboats.
Cheryl:
Oh, I haven’t heard this one. I love it already.
Gittel:
So, I am a very black and white thinker. So, I definitely need to push myself more to be in the greys but like, allowing my black and white right now of like, oh, there are two peoples, two kinds of people in the world. Like, sailboats and steamboats. And obviously, context matters and everything like that, you know, but just really blanket, really wide. And basically, it’s like, a steamboat, like, you know, you are working hard to keep that boat going and everything like that. And that you have you have ambitions, you have a goal, you have a place that you’re going, that kind of thing. Whereas like a sailboat, it depends on the wind, right. And sometimes it’ll take you sometimes, blah, blah, blah, it’s a real big practice in patience going on there and all these stuff. And it’s like, people who are steamboats look at sailboats and are like, “Oh, my God, you’re just like not doing anything.” People who are sailboats look at steamboats and they’re like, “Oh, my God, you’re just stressing yourself out. You’re not enjoying anything,” that kind of thing. But it’s just like, it’s just two different ways of being, you know, like, nothing’s — no one’s right. No one’s wrong here. It’s just whichever one makes sense for you kind of thing. And for me, I felt like when I was younger and pre-diagnosis, because it’s not like, I can’t say pre being sick, because I was always sick. But pre-diagnosis, pre-unemployment, when I was still able to actually push myself to do things, the way that I see it, it’s like I actually was never actually a steamboat. I was a sailboat whose winds always took me in the right direction, kind of.
Cheryl:
Yeah, yeah, the winds were favorable for you.
Gittel:
Exactly. And even using that metaphor, it kind of makes sense, because I used to have friends that would get really upset at me and like, talking about college at UCLA and stuff, because it’d be like, “Oh, my gosh, I’ve been working so hard. I’ve been studying this information. I’ve been working on my paper for the past two weeks, and you literally just did it this morning, and you got a better grade than I did.” And it’s like, I paid for really good private Catholic High School, and I’ve learned how to do these things really well. And, you know, but it’s like, no, actually — I mean, yes, part of it is my talent and my hard work, but part of it is just also just having a really favorable winds. And it’s like, now, I feel like the winds have stopped being favorable. And I’m like, learning what it is to be a sailboat. And like, all my former steamboat buddies are all over there doing their steamboat things, you know, and it’s like, I mean, I’m learning how to not be hard on myself for it, and just like accept my reality for what it is and, you know, like, I guess, embrace it, even I’ve had a really hard time with that word ’embrace’, but I’m starting to embrace the word ’embrace’.
Cheryl:
Yeah, the first step in embracing your life is embracing the word embrace or acceptance. Even the word acceptance, I think that’s what people have a hard time doing, is even just approaching the concept of acceptance. But I think when you said embrace what you can still do and what your abilities are, I think, I wanted to circle back to ableism, because that is something that we’ve talked about a lot in the Rheum to THRIVE support groups and the graduates, we have the post-12 week group, the graduates group, that meets continuously — not continuously, I mean weekly, for longer than 12 weeks. And I would love to hear in your words more how did you kind of learn what ableism even is? Because I know I never learned what it was in school. And then, how has that like affected — how have you learned how to counter act your own internalized ableism?
Gittel:
So, when you said that I was like, oh, yes, I did. I did teach that in school, actually. And I used to do this really fun privilege project, I guess, where I would have the students stay in their seats. I would put the trash can in the front of the room and say, “Write your name,” I would hand out piece of paper to everybody, “Write your name on that piece of paper, crumple it up, and then throw it. Whoever makes a best hit gets extra credit,” or something like that. And the people in the front, some of some students would be like, “Yeah, all right, cool, easy. Easy way and easy score.” My favorite students were the ones in the front, who would be like, “Wait, Ms. Aguilar, this isn’t fair. What about the people in back?” like the ones who actually — oh, I love those. And then, I had one student in the back who gave me probably the best teachable moment where she just didn’t throw her paper at all. I was like, “Why didn’t you take your shot?” She’s like, “What’s the point? I’m not gonna make it.” And I was like, Oh, that’s a big was piece of cake, big teachable moment. Let’s talk about this, all right, and the different aspects of how privilege presents in your life and how it can affect you. And like, whether you feel ready to take your shot or not, whether it actually feels something meaningful or not. And yeah, whenever the students would complain, I would totally do the thing of like, “What? What’s not fair? I gave you all the same pieces of paper. That’s equal, is it not? You all have the exact same task; you all just have to shoot the thing into the basket. Like, that’s equal. That should be fair,” you know, so we always had this whole thing about privilege to start with, you know, so that they could get their — it was called the hook to the lesson. That’s how I would do it.
Cheryl:
Oh, the hook. I love it.
Gittel:
Yeah. And then, from there, we would talk about how there are different sorts of privilege. And one of them was we were talking about Western privilege. And I would be like, “Hey, haven’t you ever noticed that for anyone who believes in Christianity, all of your holidays are lined up with all of our school holidays? I wonder how that happened, you know. But oh, so sad for Jewish teachers and students that their holidays, they have to call out.” You know, they have to ask the day off school or day off instruction that has to go on, and then they have to figure it out on their own. That doesn’t seem fair, just because you’re a different religion. And then, we would talk about ableism. And I would talk about that. And just like, hey, guys — oh, yeah, because I would like to, I would try to kill two birds with one stone very often. And when we would go up the stairs, the kids would like to play with the banister, kind of the railing. And I’d be like, “You know what that’s for, right, that railing that’s there? It’s for people like me, who have a really hard time going up and down stairs. You’ve seen me. And I have to hold on to that rail as I go up, because if I fall, it’ll be really, really bad. Now imagine after you guys play around with that gets really loose. And I end up falling,” and now I know, I’m like, well, no wonder these students worried about me, because I’m like, look at the things I put in their head. But, you know, so I did teach them explicitly about ableism. What I was not prepared for it was the amount of internalized ableism I would have, even just in terms of, well, I talked about having a husband, I no longer have that husband. And so, even just in terms of thinking about any new relationships, like, “Oh, am I dooming them to a one-sided relationship with me?” It’s like, internalized ableism right there. Excuse me, would I use that language to talk about any of my spoonie friends? Would I say that someone is doomed to be in a relationship with my spoonie friend? No. Why am I saying that about myself?
Cheryl:
Right, right. I think like, I really didn’t understand when I started the Rheum to THRIVE, like, support groups and the other names I had for it previously. For those who listen to old episodes like, “Wait, what are you talking about?” like, The Rheumatoid Arthritis Roadmap or I think is very early into 2020, I called it the Beginner’s Guide. But anyway, I’m interrupting myself, but, you know, what has been so powerful, what I hoped what happened but didn’t really anticipate happening to the depth that it did is this process of just saying those internal thoughts out loud to a group of people who get it. It’s like, you didn’t even sometimes need the other people in the group to be like, “Wait, sync up, listen to what you just said. Is somebody doomed to be in a relationship with you? Like, do you really feel so poorly about your self-worth?” Like that, seeing other people’s reactions, and hearing yourself saying it out loud in and of itself is like an aha moment, oftentimes. It’s not even like, the people in the group have to give you some long lecture to make you understand it. Does that make sense?
Gittel:
Oh, a hundred percent. Yeah. And even what I was saying, like, why would I say this to any of you guys? Back in the day, I didn’t have any of you. You were all hypothetical people in my mind of would I say this to someone else. Versus now it’s a very — no, I actually know you and it breaks my heart to think about saying the things to y’all that I say to myself. And it’s like, no, that’s not okay. That is definitely internalized ableism that I need to work on, you know.
Cheryl:
Right. Yeah. It’s just, it’s so fascinating to me how we can see it in someone else. Like, I can tell you like, “Oh, you shouldn’t —” I literally thought when you’re saying about how you felt guilty for leaving after your spring break. I’m sorry, so I keep coming back to this, but because I really relate to it so hard, and I’m like, “You should not feel a shred of guilt,” like, blah, blah. But then it’s like, I still feel guilty when I left my job, you know, and it’s like, why is it so much easier to to support other people than to support ourselves sometimes? I don’t know why.
Gittel:
Oh, I need that on a pillow somewhere, yeah. Because it’s so true.
Cheryl:
I know. I think it’s that we are — I mean, I do think that phrase, we our own harshest critic, you know, really comes to play. But yeah, so you have like, I think it’s just important to say that internalized ableism is that negative discrimination against your own self for your own health issues and your limitations. And it swirls together with this toxic positivity because there’s this, I feel haunted by this idea that I’ve learned to live with this idea and let it be kind of small in the back of my mind, rather than taking over my mind. But it’s there, this idea that if I just did, if I just tried harder, would I be conquering my health? Or would I be feeling better? Is there something I’m missing? If I didn’t eat as much sugar, you know, if I just tried harder, if I didn’t let myself get distracted so much by my social media before bed —
Gittel:
That one always gets me.
Cheryl:
Followed my sleep — the sleep hygiene tips that I teach you in the Rheum to THRIVE course, if I actually followed those, would I sleep better, you know? And it’s like we, yeah, in relationship to others, we can see that those are, maybe that are those are distortions. Or they may be true, and we can remind ourselves that, okay, so what? Like, maybe you’re not perfect, who is perfect out there, you know. Don’t be so hard on yourself.
Gittel:
And that’s something else that you’ve said before, I always think of it whenever I start getting upset, especially in that specific example, where it’s like, I’ve done everything right. Why am I still in pain? Why is this —? Like, that kind of thing. And then, in my head, thankfully, now I have your voice, who says, “Maybe the fact that you did everything right means you’re not in as much pain as you would have been.” Like, maybe you did everything right. And that was able to actually, like, manage some of this. Maybe this would have been way worse if you hadn’t been doing everything right, you know? Because we tend to think of it as like a wasted effort, like, “Oh, I did everything right. And I’m still in pain. I might as well have eaten that ice cream,” and it’s like, no, if I had eaten the ice cream on top of all this pain that I’m in right now, I —
Cheryl:
It probably would have been worse.
Gittel:
Exactly.
Cheryl:
And yeah, I also I wanted to ask before I move on to other coping tools because I do know that you have other ones you want to talk about. You mentioned earlier that — so, you — I’m actually curious about this. I’m sure you’ve shared this already. And I’ve kind of forgotten in my brain fog. But you were diagnosed officially in 2018. And then, you joined, like, when you joined the group, you were saying it was kind of like a, I don’t want to say rock bottom moment, but a moment of like, I don’t know what else — or yeah, could you tell —?
Gittel:
I would call it a rock bottom, for sure. So, what happened there was — and actually, using what you had just said of like, saying, like, this is the stuff I teach, I don’t want to be a hypocrite. Literally so because I was a health teacher. And during the mental health unit, almost everything ends with seek professional help, right? If like, you know, that’s literally the end of like something. Because I would have my kids do like jigsaw and be present and like, literally at the end of every presentation, seek out professional help, find a therapist. And so, I was like, okay, I can’t have been teaching this for so long and not find a therapist when I need one. You know, I’m going through a lot of things right now. And so, this was back in 2017, pre-leaving the job. But like, where it was starting to really affect me. And so, I started therapy with her. And at that moment, I literally would sob through every single session. From beginning to end, just crying the entire time. And I want to say within like three months, that was no longer the case. And I remember telling my therapist, like, oh my gosh, I’m actually not crying. I think I’m better now. Maybe I don’t need therapy. And she just looked at me, and I looked at her, and then I just burst into tears again. And I was like, yeah, okay, maybe not. Maybe I still need this. And like, how many years later and I’m still seeing her weekly.
Cheryl:
Oh, that process, those of us who are like the A-students that go through when we think — I literally remember thinking, “I’m just gonna do this for like two months. Like, I’m just gonna learn little tips and tips and tricks.” And then, after, like, you know, fast forward a few years, I was like, “You’re never allowed to move. I’m gonna see you the rest of my life. I love you so much.”
Gittel:
And especially now with telehealth, I’m like, okay. Because my therapist is still in LA. I’m no longer in LA, but I’m like, she’s still there. And I still talk to her every single week. So it was actually, speaking of her, it was her who I was telling her, like, I’ve gotten to my wit’s end kind of thing. Like, I’ve done everything I know how to do. I’m here in therapy with you. Like, I just, I don’t know what else to do anymore, you know. And she’s the one who was like, “Maybe you should find yourself a support group, like, it probably would be extremely beneficial for you to find other people who actually know what you’re going through and speak the same language.” And I was like, you know, that is definitely not a bad idea. Let me look into it. And so, that’s when I started doing the social media search. And I did find one that was a free one. And it was not my cup of tea. You know me very well. I didn’t say anything during these meetings. Me.
Cheryl:
Yes. Yeah.
Gittel:
Yeah, I was like — yeah. So, I was like, I don’t think this is the place for me. I don’t feel comfortable speaking up when like normally I’m literally the first person to talk. So, I kept looking. And I came across I think one of your reels. I think you were just dancing or something, but you used probably a Disney song or something.
Cheryl:
Oh, probably Hercules.
Gittel:
Yeah. That, to me, speaking of speaking languages, right, that spoke my language right there. I was like, ooh. And then I clicked and I saw your roadmap, and I saw that you had acronyms and Rheum to THRIVE, and how THRIVE, like each letterhead had it’s own — and I was like, oh, she’s speaking my language. Like, this is it, this is it. So, I remember I reached out to you, I got the roadmap and everything. And self stuff is not my thing. I need a group. Self-paced guiding was not my thing. I tried. I literally, I can show you the Google document where I tried to take notes and stuff. And it just wasn’t happening on its own. And then, it fell through though, because I think, what group was this?
Cheryl:
It was like, I forget what —
Gittel:
Was it December?
Cheryl:
Yeah, yeah, I think it was like I had to push everything to the spring and I was so glad because I’m not, I haven’t always been the best at keeping track of all my emails. I’m working on my organization. But I am haunted also by this. Like, oh, my gosh, Gittel, I hadn’t like followed up. Because you’re like, oh, wait, wasn’t it —? And I was like, oh, my gosh, I’m so sorry. Like, I dropped the ball.
Gittel:
And that was completely just because of my therapist, who was like, “Hey, what happened with that? I thought you found something that you really liked.” But I was like, yeah, but it fell through. Well, maybe I’ll reach out and I did that.
Cheryl:
Thank goodness.
Gittel:
Credits to the therapist. Yeah.
Cheryl:
Well, therapists either — that’s funny because some of them actually discourage, because people are — or more likely it’s the rheumatologist that sometimes discourages because they’re worried about people getting misinformation, which unfortunately is true in some groups. But it does help if you’re out there and you’re like, “Well, my therapist or my medical team said be careful, don’t do a support group because you’re just gonna —” I had one person who literally was like, I want to do your group but I told my doctor about it. And he was like, you shouldn’t do that. Because your disease is just mild at this point. And you’re gonna get freaked out. Because of that —
Gittel:
That’s the knowledge is power versus ignorance is bliss.
Cheryl:
And I was like, well, but this person was like, literally, like, I’m crying, I’m struggling, like, I feel alone. I don’t know a single other younger person with this. And like, yes, my disease on paper might be mild, but it’s affecting my emotions in my life drastically. And so, you know, to me, it’s like, I’m just — obviously, I will say that there have been, you know, a very small handful, but there are people who it’s not a good fit for them. For whatever reason, they realize that it’s too big of a group, it’s too small of a group, it’s too young of a group, it’s too old of a group.
Gittel:
Too many women.
Cheryl:
Yeah, too many women, not enough women. It’s totally fine. I always say like, I cannot guarantee that this is the best thing for you. And if you decided that it’s not, you know, there was one where it’s like, their diagnosis changed and they wanted, they really didn’t want to spend their time learning about this disease, they wanted to learn about their new disease, which like, duh. Like, I would do that, too. So, people do leave the group sometimes if it’s not a good fit, and I give them a refund, and it’s fine. But I always say, if you’re not sure, try it. And if it’s a good fit, I’ll give you a refund. Anyway, sorry.
Gittel:
That actually would make me feel so much better, like, because that’s actually how I used to say, between the Disneyland ticket versus a Disneyland pass. Because like, when you have a Disneyland ticket, I feel the pressure of like, I must do everything in one day, you know, and like, make the most of it. Whereas when I had a pass, I’d be like, I’d go to Disneyland for a turkey leg. You know, like, I’m gonna watch the fireworks and that’s it, that’s okay. And I didn’t feel that pressure of it. And so, if I had that of like, “And if you don’t like it, you’ll get a refund,” I’d be like, oh, less pressure. Okay. I like it. I’ll try it out.
Cheryl:
Awesome. Yeah. Okay, hold on. Hold on quick one second. I’m so sorry. Okay. Yeah, and so sorry, I got us off track a little bit. But ’cause I am — I think it’s really helpful for people to hear like the personal story. So, like, you finally made their way into the group. And then, what can you tell people a little bit of your experience in the Rheum to THRIVE group, which I think might have been called the RA Roadmap plus group at that time.
Gittel:
At that time, yeah, I don’t think we had an official name yet. But yeah, it was — first and foremost, it was that, one of the experiences that you just said right now of like, meeting other people and young people too, you know, because I’m sure that so many people listening have the exact same experience I have of you make friends with old people everywhere you go. Because you guys are the ones looking for seats together, you know, you guys are the ones that are like, oh, my God, where are the accommodations that they made for the, you know, like, I once went to a wedding with it was standing only. And the old people and myself are like, yeah, that’s not gonna fly.
Cheryl:
I’ve never went to one of those.
Gittel:
And, yeah, so to get into the group, and just see a bunch of young faces was like, okay, wicked. Because if you’re young and sick, you get a lot of the, “But you’re too young to be sick,” that kind of thing. And it’s like, okay. But when you see other people and you’re like, see, none of us are too young to be sick, like sick doesn’t discriminate. And that’s actually another great thing about the group is like seeing like, sick doesn’t discriminate, how diverse are we?
Cheryl:
It is. And it is, just for anyone listening, you know, the group, it does tend to be the most common ages are like, you know, 30’s to 40’s. There’s definitely always a handful in their 20’s, maybe, maybe 20’s to 40’s. But, and then there’s always a lot of people in or another handful of people, you know, in the older years, like 60 plus. And so, it is — I actually love having an intergenerational group because there’s a wisdom that, I mean, not to stereotype but there is, in my experience of doing this for the last few years, there’s a wisdom that certain people can have after living life for a while, you know, that they can bring, and that nurturing presence that they can bring to the younger people, and then the younger people can bring a different energy to the older people. So, it’s really great. But yeah, so many people say that. And for the first meeting, inevitably, someone will say, “This is my first time talking in real time to someone else with my age with the same diagnosis.” And maybe it’s so powerful, you know, because you might talk to people like, asynchronously, you know, comment on their stuff, or participate in an Instagram live or something like that, where you’re commenting, but the actual interaction, being a live interaction even though it’s virtual, is really powerful. So, yeah, so sorry. Back to your story. I keep interjecting, I’m just excited.
Gittel:
Oh, that’s totally fine. But yeah, that was actually one of the things. And again, it’s like, it’s not even — don’t apologize for interrupting, because you activate things in my mind where I’m like, oh, yes, good one. But that reminds me of when we first started. And we were trying to figure out, like, we use the school language at first, and we’re like the freshmen, the sophomores, the juniors, and the seniors. And that actually helped a lot in terms of the experience that some people are afraid of with support groups, where it’s like, that’s gonna be a lot of knowledge all at once, and I’m gonna get overwhelmed and like, oh, my gosh, especially if I’m, someone has a severe case, and mine is only mild, and you know, like, all of that kind of stuff. But when we started doing breakout rooms, remember?
Cheryl:
Yeah, yeah.
Gittel:
Okay. The people who have been dealing with this for longer who already have like, their ways, like they already have their toolkits, right, already have like tips and tricks that they like to use, like, we could discuss. And then, the people who didn’t, it was nice, because it felt like we could share our knowledge with the people who didn’t have it yet. And then, the people who were new to it, and like the freshmen, basically, were like, they had a lot more new knowledge, right. Like, oh, new research, new treatments, new, like, oh, have you guys tried this? And I didn’t even know that was a thing yet. It was something the doctor told you because you just got it whereas we’ve had it forever. And, you know, yeah, so that was pretty fantastic.
Cheryl:
Yeah, yeah, I totally, I still — honestly, I learn things every week. I mean, it’s really like, I do have a certain expertise from my background as an occupational therapist and my lived experience as an RA patient. But it’s impossible to know everything and stay on top of every trend and every research study. So, having that collective wisdom from the group has been so wonderful, you know, for me personally, and the group. And yeah, I’ve just really appreciated yours and everyone else’s presence and seeing the genuine friendships that have come out of it, you know. I mean, and now because it’s been a couple years, I know, some of those friendships have sustained, like, outside of the group, you know, and it’s just, it’s very magical.
Gittel:
It is. It is extremely magical. Like, yeah, when I think about the fact that none of you were in my life a few years ago, it’s kind of — wow, that’s wild.
Cheryl:
Yeah, the people that now we share, you know, memes with each other, like you and I both love the Goofy Movie. So, like, we’ll share like, oh, that is reel of the Goofy Movie and just connect. Like, it’s not — and that’s another thing people don’t realize about support groups. It’s not just about talking about your illness. It’s about connecting as human beings and remembering that yeah, we have lives and interests and value outside of our illnesses as well. And validating that for each other.
Gittel:
Oh, so much. That was like one of the — I think probably one of my favorite meetings is the one, and it was during the acronym, the —
Cheryl
The show and tell. Yeah, that’s under V —
Gittel:
No, the show and tell was great. But no, I’m talking about the one where it was — oh, no, I’m losing it. Hold on. Because I just started thinking of the show and tell. But no, it was the — no, I lost it.
Cheryl:
Remembering we’re ourselves outside of our condition. Oh, no. I totally jumped ahead. That’s one of my toxic traits of thinking I read people’s mind and interrupting.
Gittel:
But then mine is it then I just go with you. And I’m like, oh, no, my brains over there. And I forgot where it was before. But yeah, it was… No, it’s gone.
Cheryl:
It’s okay.
Gittel:
Maybe hopefully, it’ll come back.
Cheryl:
Maybe when you listen to the recording, you’ll put it in the comments on Instagram.
Gittel:
Yeah, I remember what I was gonna say! Yeah.
Cheryl:
But yeah, we do so a show and tell for the record for undervalued and valued activities under the THRIVE acronym. And that’s always really, really fun. And there’s always a lot of artistic people, which it’s okay if you’re not, but I’m always impressed with people’s artsy skills.
Gittel:
Yeah, I remember someone being like, how do you guys have time for so many hobbies? And if you really thought about it, it was the ones who had been dealing with pain longer, that had more hobbies and stuff. Oh, that I just remembered — because not one of my favorite ones, and I don’t remember which acronym you would think it was under, but it was when we were talking about life hacking. And we’re talking about how we all became like life hackers, and it’s like, your creativity muscle really gets like, challenged when you’re trying to figure out different ways of doing and achieving a task, you know. Like, obviously, there’s always the frustration of like, oh, I used to be able to do this without even thinking, you know, and now I have to like, learn out every step, but it’s still pretty phenomenal and fantastic that I’m able to plan out every step and figure out a different way of achieving the same or similar goal, you know. So, I remember, but that was one of those examples where it’s like, oh, someone who is newly diagnosed was like How the hell do you guys all have time for hobbies? The ones of us who would have it longer were like, oh, well you start to learn your good days versus your bad days and the days you can push yourself versus the days you should not push yourself, you know, like that kind of thing.
Cheryl:
Right? Right. And the life hacks are under the ‘Tools for pain and fatigue’, just for those —
Gittel:
That was the first one. That was one of the first meetings and that got me like, “Yeah, we’re life hackers, let’s do it!”
Cheryl:
Yeah, and doing it without shame. That’s something that really surprised me when I shared on social media my life hacks. I was showing it just for information. People are like, “How are you so confident and happy about using these aids?” I’m like, because they helped me? Like, I’m confused. Like, why would you not be? Like, “Well, don’t you feel embarrassed for using them?” And I was like, “Oh, I don’t have that gene.” I probably should have the embarrassed gene a little more. But okay.
Gittel:
No, no, no, wait. Don’t move it. Because that is literally back to the seat cushion that I was talking about. I was like, yeah, no shame. I’m like, I feel smart for doing this. In fact, people are jealous. And before I forget, because that’s what I wanted to do, I wanted to plug in the ‘Keeping it Real with Arthritis’ book. Because that’s literally what — my section is on page 234. And it’s literally about me and my seat cushion. And that’s my original seat cushion in the picture of the UCLA one. I don’t think — you probably can’t see it, but.
Cheryl:
Okay, I’m putting it in the show notes. Perfect. Okay, and but I do want to talk about another coping tool that, or, you know, that helps you improve your quality of life, which is marijuana.
Gittel:
Exactly.
Cheryl:
And then, and we do have a little bit more time that I can move things around a little bit. So, I think we can have about 15 more minutes, if that works for you.
Gittel:
Okay, let’s do this. That’s literally where I have my pain toolkit. And the first thing I have on there is cannabis. The last thing I have on there is my seat cushion. So, cannabis, so there are so many ways of speaking of like, old versus new, right. Like, oh, now it’s so very different. If you thought you knew what the cannabis world was like a few years ago, it is very different now. And there are just so many kinds of products, there are so many different ways to consume cat cannabis, which is the phrase that they use a lot now. Because you don’t just smoke it, right, like you can ingest it, you can also use it as a topical. There’s just so many ways. For smoking, strains, the ones that helped me for pain and pain relief tend to be anything with like ‘OG’ and ‘Kush’ in it’s name, or ‘ACDC’. Those stronger indicas tend to be more body relaxing, like the way they used to tell you to differentiate between sativa and indica is indica is ‘in-the-couch’. And if you’re dealing with chronic pain and stuff like that, like ‘in the couch’ is kind of where you want to be. Like, to really be comfortably in the couch even better. So, you know, that’s where I use that. I also use cannabis as an appetite stimulant as I was just saying, that was obviously a really big thing for me. So, for that I’ve noticed anything with Girl Scout cookies, or anything with anything edible in the name tends to be good. Like, lava cake, gelato, anything that’s like, “Oh, I kind of want to eat that,” it’s really gonna help you have the munchies and get your appetite.
Cheryl:
That’s a good rule of thumb.
Gittel:
Yeah, and then for depression, I’ve noticed anything with like citrus in its name. So, lemon haze or lime haze tend to be some of my favorite. Something like orange or that kind of thing. And the reason for this — so, this is where the Ms. Aguilar comes in — the reason for this is because right up until then, I was talking about cannabinoids, right? Or sorry, I was talking about strains, right? And those strains are just like the different kinds of cannabis plant, right. It would be like the difference between one kind of rosemary versus another kind of rosemary, you know? Like, they’re still rosemary, but they’re different plants, you know. And so, that’s basically what’s happening with cannabis. There are different plants with different variations. Now, there are 66 known cannabinoids, from the last time I’ve researched this, which was a while ago. Out of those 66, the most famous one is THC, which is the psychoactive. So, a lot of people will say like, “Oh, I want to try cannabis for my pain, or for my appetite, for my depression, but I don’t want to be high.” Then basically, you don’t want anything high in THC, because that’s the thing that makes you feel the psychoactive high. You want something most likely high in CBD, which is the other most popular cannabinoid that’s out there and which is not federally — it’s not a schedule one drug, so that’s why you see it in a lot more places. You see water with CBD infused at Whole Foods, right, because CBD is a non-psychoactive cannabinoid. And what it does is it lessens inflammation and allows your muscles to relax. So, obviously that’s really good for chronic pain and inflammation. And so, high-end CBD products tend to be very good for, like I said, chronic pain and inflammation and for not feeling high, like psychoactively high.
But you do want it to have a little bit of THC just because that’s how the reaction happens. Like a full — people who have tried full CBD products are probably like, “Oh, it didn’t do anything for me.” Because it kind of wouldn’t. Like, you would need to have just a little bit of THC to react. So, like, I do medical marijuana for my mom as well, who has a lot of problems to deal with as well. And for her, I normally do like an 18:1 ratio. Or basically I find like the biggest ratio where it’s like a little bit of THC, but it’s mostly gonna be CBD to help her out. And then, from there, I can go into a little bit more technical into terpenes, because that’s where the real research is starting to happen. And they’re realizing that it’s the terpenes in the plant that really has these effects. So, if you notice, I said for depression, I’ve noticed that citrusy types tend to help. That’s because the terpene that helps with, literally, with depression is called, I believe, lineol — L-I-N-E-O-L — something like that. It’s like a terpene that specifically aids with that. So, of course, the strains that have more of that terpene is going to help you with depression.
So, I’m very excited in terms of like, let’s get the research out, let’s find out what’s gonna really be great. Let’s isolate the things that we need and, you know, that kind of thing. But yeah, it’s really exciting. There’s so many different ways. My favorite medicinal brands, Level is medicinal brand that I really like, like literally, level up like ‘level’. They have tablets, so, you know. When they’re talking about Ms. Norbury being a drug pusher, and Lisa’s, like, “Has your teacher ever offered you marijuana or tablets,” or something like that and then the kid trying to be a smart ass goes, “What are marijuana tablets?” I laugh every single time I take one of them because I’m like, “What are marijuana tablets?” is this like, this technology that did not exist when Mean Girls was there. But anyway, so they have pills that you can — so, that’s what I also got from my mom, because she’s not gonna sit there smoking out of the bong the way that I do. She wants to take a pill and go, so I got her that. There sublinguals that you can literally put underneath your tongue and it just melts, kind of like, remember those Listerine strips that we used to have?
Cheryl:
Yeah, that’s what I’ve tried for helping sleep. And it’s been interesting. I’m still experimenting a little bit. But yeah, and I just want to say I will put in the show notes links to a couple of previous episodes where we had a lot of, I put a lot of research, you know.
Gittel:
Oh, nice. Because mine is not —
Cheryl:
Oh, yeah, no, you explained it really, really well, because you’re a good teacher, and but there are also for people who want to look at the research articles because it is it is a mind shift for those of us, you know, raised in a generation where all cannabis was seen as bad, and there really isn’t like an actual, like, scientific reasons that cannabis is any, you know, is worse than for example, alcohol, which people die of frequently from overdoses. And it’s obviously led to horrible things like drunk driving accidents and all that. And, you know, people who get mean drunks and all that stuff. So, you know, point being, that’s a whole other can of worms to open, but there’s increasing recognition in the scientific community of the role, particularly in pain management. And in a world where, restrictions are increasing to opioids, we need all the tools for pain reduction that we can have. And the Arthritis Foundation, the American College of Rheumatology, like, well-respected organizations have put out, you know, statements saying, hey, here’s some research showing that — and Creaky Joints, as well recently did — here’s some research showing, you know, these are the benefits, potentially, of cannabis in pain in particular. But you’re right that there’s also — and Christina talked about this, Christina Montoya, The Arthritis Dietitian talked with us in terms of the appetite stimulation and helping with anxiety and depression, and there’s just a lot of different things.
Gittel:
Yeah, because she has a whole episode literally just about cannabis and stuff, right?
Cheryl:
Yes, yeah. We have an endogenous cannabinoid system in our whole body. Like, this is not like, you know, yeah.
Gittel:
It’s not foreign. It’s literally, our bodies are literally made to process this plant.
Cheryl:
Yeah. You do need to know in your state, you know, in your country, what’s legal, for sure. Unfortunately, there’s some kind of old-fashioned laws around it.
Gittel:
And interactions with other drugs.
Cheryl:
Yeah, that’s totally the most important thing. Yeah, for sure.
Gittel:
So, one that I just read that I was like, “Oh, no one’s told me that but that’s important to know,” is that cannabis affects how your body gets anesthesia.
Cheryl:
Oh, that’s right, yes.
Gittel:
Which makes sense. Because I took a gummy before going to my dentist so that I could relax and be okay and everything, especially because during COVID, it’s like, okay, I’m taking off my mask, ugh. Because obviously, you have to take off your mask at the dentist, like, there’s no —
Cheryl:
Right. Right, right. Yeah.
Gittel:
So, I was like, okay, I’m gonna take my gummy so I can be a little bit more relaxed, blah, blah, blah. And he puts the anesthesia in and waits the amount of time he’s like, “How does it feel?” I was like, “I still feel it.” He’s like, “Really?” So, he had to put like, double the dose of anesthesia for me to feel it. And I was like, that’s interesting. That’s never happened to me before. And then, I came across this article that was like, cannabis affects anesthesia. I was like, oh, well, that makes sense.
Cheryl:
Yeah, there’s a lot of little things like that too, to keep in mind, but it is something that people are really interested in. I think the Arthritis Foundation put something out that 57% of patients or something with arthritis have tried it, which is a lot, you know, a lot more than most people think. So, unfortunately, I have to get to a medical appointment for my ear, nose and throat doctor, so I have to start wrapping it up a little bit. But I do want to hear, in terms of the rapid-fire questions, do you have any favorite words of wisdom for newly diagnosed patients?
Gittel:
When I read that question, and it ended with the word ‘patients’, right? And I was like, oh, literally, that’s it. Patience. Oh, the virtue; the value. Yeah, that’s it. Like, this is a marathon not a sprint kind of a thing. And it’s just like, you need to be patient more than anything with yourself. And especially when you’re dealing with your body doing things that you’re not used to it doing or not doing things that you wish it were doing, that kind of like, both patience is just huge, and especially patience in terms of like what I was saying, you never know what technology is going to change from here until later, you know, so even just the patience between waiting for hopefully a better treatment at some point in time. You know, like, but patience is huge. Yeah.
Cheryl:
A hundred percent. I love that. And do you have a favorite movie or book or show you’ve watched recently?
Gittel:
You know you got me with that one. I was like, ah, and then I latched on to the word recently. And I was like, okay, okay, okay, I can do recent. And then I was like, you know what? No, no, let me do meaningful to me in life. And you know what really got that one is Pixar movies. Pixar movies do it. So, Inside Out gave me the best, like, to be able to have the language once again, to be able to express myself especially to therapists and be like, “Oh, I just, I feel like sadness is running the show and doesn’t know what the hell she’s doing. And angers like, you know, I have anger tied up in a corner. I don’t even know how to deal with anger right now,” you know, so just like that’s been very helpful. Soul, that Pixar movie as well.
Cheryl:
I love that movie.
Gittel:
Oh, so good in terms, especially for a spoonie perspective of like, what’s my purpose? You know, like, I watched that movie after I had become unemployed and stopped teaching and everything like that. And it’s like, especially in America, it’s like, what do you do? Like, that’s your identity. I’m a teacher. It’s like, oh, now I say I’m a forever teacher because — or I’ll say I’m a professional patient. Because those are the things that I —
Cheryl:
You are. Yeah. You’re both of those.
Gittel:
Yeah, and then the third plug for a Pixar movie I’m gonna make, I’ve only seen it once, but it really got me in the feels and I’m excited to see it again is Lightyear, the Buzz Lightyear movie. And once again, they got me in those spoonie feels, back in the whole like steamboat versus sailboat kind of feeling like you’re in a different place from everybody else. Oh, yeah. It got me.
Cheryl:
It was good. Yeah, I’d heard bad things, you know, it didn’t get a lot of views. And I really liked it. Yeah.
Gittel:
Yeah, I did too. So, those are my — you asked for one but I’m doing three. Those are my top three Disney Pixar spoonie —
Cheryl:
I literally have thought like, should I start like a pop culture podcast because I love — like, my favorite. One of my favorite podcasts is like, Pop Culture Happy Hour and I just love talking about movies and books and TV and stuff. Anyway, do you have a favorite mantra or inspirational saying?
Gittel:
Yes, I have two. One is ‘One moment at a time’ because they used to tell me one day at a time, and 24-hours was way too long. And then, I even tried to just, like, one hour at a time, and that still was too long. So, I was like, I actually like moment because I get to decide what these moments are. Whether the moment is waking and baking, or the moment is reading a chapter, or the moment is taking a shower. Whatever that moment is gonna be for me, just doing one at a time, you know, and that’s really helped me. And then the second one is ‘My now is not my forever’.
Cheryl:
I always hear that one in your voice. Honestly, because that’s like, that’s what I learned from you and I think of that one a lot. My now is not my forever. Love it.
Gittel:
And then, even though for chronic illness, I mean, technically, it is. But in terms of that I’m saying like, yeah, but you never know what factors are going to be different. You never know how things are going to change. So, this now that you are experiencing is not forever. And it works both ways too, in terms of like, this is such a good moment. So, enjoy it because it’s not going to be forever.
Cheryl:
Right, right. Exactly. Exactly. If it’s bad or good. What is something bringing you joy right now?
Gittel:
Angel City Football Club. So, yes, sports season is back. Soccer.
Cheryl:
Oh, you used to play soccer, Cheryl?
Cheryl:
Yeah, no, we just watched the Sounders.
Gittel:
Yeah, the US, the men. I’m talking about the women. The women’s is where it’s at. So, the National Women’s Soccer League just started up again. I got my games starting back a few weeks back and may go all the way until October. And I have found that watching sports really is my best way to stay present and in the moment, you know, because it’s really hard to get distracted, because you’re watching this happen, especially if it’s a good game, right? You’re just like, oh, really into it. So, my girls, Angel City Football Club, it’s our second year, our inaugural year was last year. I’m like, I was gonna — I feel like such a hipster when I do these kinds of things — but I’m like, I was a fan before they even had a logo, you know.
Cheryl:
That’s amazing.
Gittel:
Yeah. So, it’s like, really exciting. And yeah, that’s for sure. Your team just kicked our teams butt, though.
Cheryl:
Well, they’ve been going for a while.
Gittel:
Yeah. And they are have Rapinoe in it. Rapinoe? However, you say it.
Cheryl:
I think you say Rapinoe. Yeah, she’s amazing.
Gittel:
Yeah. Yeah. So, she’s — we just lost to you guys 2-0, and I was like, aw. It was a good game, though. I enjoyed watching. And I was present the whole time. So, see?
Cheryl:
That’s amazing. I’ve got to watch the women’s team. Okay.
Gittel:
You really should. Yeah. Especially because, you know, like, men tend to like, scream and cry about their fouls, and it’s just like, oh, my God, let’s go. I want to see the game. Women don’t do that.
Cheryl:
No, they don’t. No, no. I love it.
Gittel:
So, I love it.
Cheryl:
What does it mean to you to live a good life and thrive with rheumatic disease?
Gittel:
I think it means being a, becoming a life hacker. And just learning how to go with things sometimes and how to accept them because that’s been the biggest thing for me. Because before I was not Ms. Go-with-the-flow, I was definitely ‘You create your own destiny’ and blah, blah, blah. And now I’m learning kind of the opposite of that, of like, sometimes you just need to accept things and go with the flow. And, you know, like, what is the other one? Like, it’s not rejection, it’s redirection and, you know, all of those sound bites of wisdom.
Cheryl:
I love that. It really reminds me of one of the things I’ve say in the group or n the course which I teach is ‘The truth will set you free. But first of all, piss you off’, you know, that’s a Gloria Steinem quote. And for control freaks, the truth is, your life will be better if you can let go of control, but it will first piss you off, because control is what is feels comfortable and powerful and positive to us. And so, letting go of it feels extremely scary if you’re a control freak. But and annoying, you know, but it will set you free. I promise. And if it doesn’t, let me know. And I will amend that statement. And then, okay, lastly — oh, I think we’re gonna have to do this again — where can people find you online?
Gittel:
Oh, yeah. Okay. I would say the best possible places through Instagram. I have a public profile. And my handle is @Gittel_GT, which is G-I-T-T-E-L underscore G-T, because it’s literally the two names that people might know me as. The third name that I technically have, which is my middle name my family calls me, so, yeah.
Cheryl:
Great. Well, thank you so, so much, I know that people listening will have gotten just so much out of this. And, you know, I’m just, I’m very glad that you came into the group and it’s just been a joy just getting to know you. And you are a forever teacher. You teach people in the group and your participation every week, and you’ve taught me, and I love you, and goodbye for now.
Gittel:
Bye for now. See you soon. Love you so much. Thank you for existing.
Cheryl:
No, thank you.
