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Life with Rheumatoid Arthritis in Three Continents: Maria’s Story

August 15, 2021
52 min read
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Maria shares her journey getting diagnosed with rheumatoid arthritis at twenty one years old in Venezuela, South America. In the nineteen years since her diagnosis she’s studied in the USA, gotten married, had two children and relocated to Australia. She shares the most important lessons she’s learned and how they inspired her to form “Auch Revista,” a Spanish-language magazine supporting others with chronic illnesses.

Episode at a glance

  • Art and arthritis: Maria shares how she participates in artistic hobbies like photography and artwork despite hand pain from rheumatoid arthritis
  • Diagnosis journey: Maria’s diagnosis journey with rheumatoid arthritis in Venezuela and her emotional reaction to the diagnosis at age twenty one
  • Managing expectations: Maria and Cheryl discuss what it’s like to try to manage your expectations and plan your life when diagnosed with RA so young
  • College and international studies: The difficulties of managing rheumatoid arthritis while being a college student in the USA, including barriers to medication
  • Social media: Cheryl & Maria reflect on the benefits and drawbacks of social media, both having been diagnosed prior to social media
  • Maria moves to Australia: the scarcity of medication and resources in Venezuala leads Maria and her husband to move to Australia
  • Pregnancy and parenting with rheumatoid arthritis: Maria shares her journey with pregnancy and parenting her two girls with severe pain from rheumatoid arthritis
  • Remission: Maria shares the happy news of her current remission and how that’s improved her quality of life.
  • “Auch Revista” – Maria explains why she started this non-profit Spanish language magazine to share stories and tips for others living with chronic illnesses.

Speaker Bios:

Maria Gonzales has lived with rheumatoid arthritis since she was twenty one years old. Throughout the years she has lived on three continents with RA. She also graduated college and had two babies while managing rheumatoid arthritis. She has experienced everything from excruciating pain to a current remission. She enjoys sharing her journey with others and started the “Auch Revista” (translation: Ouch Magazine), a non-profit magazine for the Spanish speaking community living with chronic illness. 

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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 Sponsor

This episode is brought to you by Rheum to THRIVE, a 6 month education and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected.  Join the waitlist today! 

"Life with arthritis in Venezuela, USA and Australia: Maria's Story" Arthritis life Podcast episode 42, along with a picture of a woman with brown hair smiling

Episode links:

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.

Full episode translation:

Interview between Speaker 1 (Cheryl) and Speaker 2 (Maria Gonzales)

[Introductory music]

Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started. 

Cheryl [00:50]: Hey! Hi, Maria! Welcome to the Arthritis Life podcast.

Maria [00:54]: Well, thank you, Cheryl, for inviting me again. I’m so happy that we’re going to have this conversation now in your podcast, because we have done it in mine. So, it’s your turn now. I’m so very happy.

Cheryl [01:03]: Yeah! I’m really excited. So, can we just start off with the basics? Can you let the audience know a little bit about yourself, like your age, and where you live, and some of your favorite hobbies? 

Maria [01:14]: Okay, yes. My name is Maria Gonzales, as you said. So, I’m 39 years old — um, 40, or almost close to 40, like Cheryl, but not yet. But I’m going to be 40 this August. As a career, I’m a photographer. I’m a graphic designer as well. And I’m going through that process of trying to swap from photography to graphic design, mostly due to my rheumatoid arthritis. I been with rheumatoid arthritis for a very long time now, close to Cheryl at the same time, but I think we have like similar stories.

I’m originally from Venezuela. So, in South America, so I speak Spanish. That’s what we speak in Venezuela, and I’ve been living in Australia for 12 years. I live in Sydney right now. So, for almost six years, I think, it is. I first arrived to Australia to our small town in Adelaide. Well, it’s not small — it’s like a big — like a 1 million, I think it is. But still, it’s not as big as Sydney. And it’s been interesting for me also to do these changing of cities. I’ve also educated myself in the United States. And it’s been, oh, with my rheumatoid arthritis. So, it’s been quite an interesting journey there. What else can I tell you about myself? I love drawing. It’s one of my passions as well. I love to write as well. I’ve been doing poetry. I’ve been doing like this exercise, like sort of journaling but with poetry. So, yeah, that’s me. And I’ve been trying to stay optimistic with my arthritis through exercise and little routines that I do to keep my mind, uh, especially my mind healthy

Cheryl [03:03]: That’s great. I love hearing about that. And yes, I wore my artistic little shirt today with these little mounds with eyeballs on it. Yeah, no, and I think it’s interesting, so many people I know with rheumatoid arthritis are artistic. And, obviously, because the disease can affect your hands so much, it can make it harder to do things like drawing. Does your rheumatoid arthritis affect your ability to draw?

Maria [03:28]: Yes, it does. Yes, it does. During the time that I used to have it like, out of control. I had really struggled with even holding the mouse or, you know, just like holding a pencil. Yeah, that could be an issue. But it also keeps you like working yourself as well. Like, yeah.

Cheryl [03:49]: Yeah. So, it’s good to keep using those muscles in your hands too. So, yeah, that delicate balance between resting them when they’re too sore and then, you know, but not resting them so much that you lose your muscle. So, yeah, that’s — did you develop any — or did you use any life hacks or things like, you know, a wide grip pencil or an alternate design or anything?

Maria [04:12]: Like — like the ones with the little kids — oh, I used to have one here. I think I’ve misplaced it — but, you know, the ones that help you like, if you’d like a bigger grip, like thicker, I don’t know how to explain. That helps a lot because one of the hard things to do when your hands are out of control and you have a flare is to do this actual movement. And I saw your videos, the one that you did, is so helpful. And even just like seeing this type of video actually helps you improve your technique on how you want to improve, how to hold the pencil. Yes, so, anything that helps you — the little balls that are for exercise. Oh, I used to have it as well. But, you know, those squishy balls?

Cheryl [04:58]: Oh, yeah. 

Maria [05:00]: Also, to improve my hands. This one which I have already very damaged, like I cannot bend it. It does help me with a grip, and to improve my exercise in the hands. There are many extra exercises for them. Also, the ones that where you put like a cloth on the table and you open and close, that really helps. There are many things that you could do, but definitely holding the pen can be one of those. Especially if you’re not feeling that comfortable. Yeah.

Cheryl [05:32]: Yeah. Great. Well, I think we’ve already gone off script, but I just wanted to ask you that. But yeah. Yeah, today we’re going to talk about your story and a little bit about what inspired you to form your own magazine. It’s a Spanish language magazine, about rheumatoid arthritis and other things. So, I can’t wait to talk about that. But first, I always like to start, if I’m talking to somebody who has lived experience with rheumatoid arthritis or someone who’s a patient, you know, I’m always curious about people’s diagnosis journey, you know, was it hard? Was it easy to get diagnosed? And what was your experience?

Maria [06:07]: Okay, yes. Well, I was very young, I was 21. I was in a car with my whole family. We’re doing like a Disney in Orlando, where you walk all day. And I had like a, a little bit of, I didn’t feel right, like in my hip. But I kept going, kept going all through the day. We saw the fireworks, we were going to go to a restaurant afterwards, after Disney. And when I was getting out of the band, I couldn’t get out. I said to my family, like, “Okay, I cannot walk.” And they were horrified. Especially my mom, like, “What are you talking about? How can —? What is going on?” And I was like, “I swear I cannot move my leg.” This leg, that’s the right one. And she said, like, “No, this is not right.” 

But lucky for me, my sister, she’s a doctor back in Venezuela. She said — but she was living in the United States at the time where she wasn’t practicing or anything, but she’s a doctor. And she told me like — uh, she asked me a few questions. “How do you feel? What is going on?” You know, like, the typical questions that doctors asked. And she said to me, “You’re gonna have to go to the doctor once you get back to Venezuela, because you’re gonna have to seek this, this for rheumatoid arthritis.” As she even said the word ‘rheumatoid arthritis’. The first time I heard that. And she was like, this could be nothing, it could be something else, but you need to go check yourself.

                            I remember that night, my brother had to carry me to the restaurant, and then I was able to walk again. So, it was like a small flare. Like, it lasted two hours. They gave me some Panadol or something. And it helped me out a little bit. So, that was my first experience. I got back to Venezuela, got everything on the test. And I had the rheumatoid factor very high. And luckily for me, I had that thing going on in my blood. Because I know a lot of people are seronegative and you don’t get to see that for a long time. But for me, I had everything going on.

But my arthritis, at the beginning, is like I had a flare one day and another one a month after. So, I was lucky to see that I had the rheumatoid factor very high, but I had some symptoms, like the pain in the in the hip. Then I think I had another in the shoulder. But it was like, um, like a month in between. So, it wasn’t very often. It was very hard for me. If I hadn’t had my sister telling me, “You have rheumatoid arthritis,” I could have gone, who knows, six months or a year without knowing. Because that’s the thing, many people don’t know, and they don’t have a sister who is a doctor. So, that’s what I’m trying to say. Like, I was lucky to have that. To have that opportunity to have somebody telling me, “Oh, these are your symptoms, this is what is going on.” 

                            When it comes to the doctors, I was lucky as well. I come from a family of doctors. So, we know people, and that helped me out a lot. And also, that I go through the private system in my country, which is a big deal for us in South America. Like, you could either have the option to go to public and there is a lot of problems there. So, um, so that helped me out. It was very fast. I was diagnosed very early. So, in that sense, when people tell you and doctors tell you if they get you undiagnosed, I think it also helps you out and I can see I’m privileged. Because I’ve been 20 years in my illness and I feel — I feel I can still go a few more.

Cheryl [09:52]: That’s great. You know, and yeah, often I hear the opposite story, you know, that there was a difficult time getting diagnosed or being believed. So, it’s always good to hear the positive stories where, you know, you got your diagnosis quickly, and yeah.

Maria [10:08]: Yeah. Although, when it comes to my emotions, I did went through the whole range of emotions of rheumatoid arthritis. I got horribly depressed. I was very angry at the beginning, I felt that all my plans had stopped, because we were so young. You and me, we were so young when we were diagnosed. I don’t know about you, but for me, it also got me in a really bad time. I was changing from art. I wanted to do something different in my life. And I was, “Okay, I’m going to study photography. And this is what I’m gonna do,” and boom, you get the diagnosis. And I was like, “Wait, can I go? Can I still go to the United States to study?” I wasn’t sure. I was very clueless. I had no idea what was happening. So, yeah. So, that was the downside for me. I went through a very angry period. Depression, because I wasn’t feeling well. I was only controlled with NSAID at the time. I felt very alone as well. Like, I don’t know about you, like I didn’t know anyone. Everyone in that age is like, “Oh, let’s go to parties.” And I’m like, going to the couch, just leave. So, it’s very hard at that time.

Cheryl [11:27]: That’s more common. Yeah, I was a bit lucky. Because I guess due to the severity, and just due to my doctor’s training, she put me on really aggressive medication really, really quickly. And I went into medicated remission within a few months. So, I was feeling so much better. I’d been feeling really bad for a long time, and without knowing why. And then, so, when I felt so much better, so quickly, I didn’t really grieve it at all. I was just happy. And like, that’s my memory of it. Of course, I wish I had better journals and things. But then five years later, five to six years later, when my medicated remission wore off, and I had to switch medicines and actually learn what the disease was more, then I really grieved it.

                            So, you know, it’s, again, there’s not this linear story. You know, some people they go through those stages of grief right after the diagnosis. Other people like me, it was like, my doctor was super optimistic. She said, “You know, you’re a soccer player, you’re active, like, that’s our goal, is to keep you active for the next like, 80 years,” you know, because I was 20, like you, you know, 21. So, I was like, “Okay, I believe you. You’re like the nicest doctor I’ve ever had.” But then after five, six years, we had to have another conversation, like, Okay, well, that’s the goal, but we have to sometimes recalibrate the goal. You know, but I was a little bit — I would almost say, maybe just too optimistic, because I think it is smart to think about how your disease can affect your life. And I was in this kind of simplistic like, I can do anything I want. You know what I mean? So yeah, you were probably more realistic.

Maria [13:04]: Well, but for me, was also everything I want. But then I hit the wall of arthritis, because it was so early that they diagnosed me, I decided to go to the United States without knowing what was going on. And then I, in the US, I was all by myself or with my brothers, but now without my parents who would have seen me and telling me, “No, this is not right. You need to go to the doctor.” And I was also on a sort of denial like, this is not happening to me. And I was feeling like, horrible. And I was like, no, I couldn’t do anything. Who am I kidding? And I was like, really? I couldn’t — I was studying photography at the time. Sometimes I couldn’t hold the equipment, right. Photography is all about expanse, and lights, and equipment, and heavy things. And I was with my hands, you can imagine all my knuckles were like huge, everywhere. But I still — I don’t know, I had like a mindset that I really wanted to do this, so I still do — did it. But at the same time, in my feelings and emotions, were out of control, because I was feeling awful. So, if anyone is listening to this, and you’re going through this stage, you can be on denial at times and that’s fine because it’s also — I feel like at the process of understanding what is going on with it. So, it’s okay if you go through this, but you need to get back on track.

                            And there was a time when I said, I have to stop. I was like, “I have to stop I need to go back to Venezuela, see a doctor and take other medication.” Because I was only taking methotrexate, no prednisolone, no nothing for the other untouched things that I could have controlled. And it was too much. When I firstly was diagnosed, I remember that my doctor — I’m sure he told me many things — but one of the things in my head was, “If you don’t take the medication, you could end up on a wheelchair.” And I was like, oh, but that was like — that stuck with me. And sometimes when you go to that person, when they’re gonna tell you the diagnosis, everything seems very bad. Everything that the doctor is telling you, it seems like a bomb that is going on in your world. Like, everything is getting disrupted, and you don’t know what to do. So, if anyone is getting diagnosed, we get you. We understand. And in some way, the doctors do have to say that, unfortunately. They have to make you like a wakeup call, like shake you and make you realize that yes, this is — this is real business happening. Yeah, I wanted to add that. 

Cheryl [15:57]: Yeah. No, you’re the second person to say that. And it’s funny because I don’t remember my doctor saying that. But my parents do. They remember. My mom was in the room with me, and she remembers them saying that, well, it was after they told me about the medication. And I didn’t have any hesitancy because I was so desperate for any relief, because I had been feeling so badly for so long and been told I was just a hypochondriac, you know, that finally someone was listening to me and giving me a medication. I’m like, I’m not asking any questions. I’m gonna take this, you know? And my mom was like, “Well, wait a minute, does she really need this?” Because, you know, you if you read the side effects it says all sorts of scary things.

                            And then the doc — that’s when the doctor thew out that, you know, concept of, you know, that it can — this is a progressive disease. And I think it’s a very tenuous thing because on the one hand, it makes me uncomfortable sometimes thinking about people using that analogy of ‘You might end up in a wheelchair’ as if that’s like, literally the worst-case scenario. I know that’s not how you meant it, but like, there are many people in wheelchairs who live wonderful, you know, full lives. I’m not saying that as like inspiration porn, but like, literally, you know, full complicated lives just like anyone else. But it is — it’s something that people doctors say because it’s hard for people to get into the mindset of the word ‘arthritis’ meaning something systemic and serious and not just like ‘my knee hurts’, you know?

Maria [17:23]: Yeah. Also like to give you like a visual tool of how this bad can get, at nastier stages. It doesn’t necessarily mean that you cannot have a fulfilled life if you end up in this situation, or if your disability escalates very fast, or — but what they try to tell you or warn you there, many doctors, they say like, “You need to take medication.” For me, that’s what has worked. I know that you have interviewed other people who are not taking any, I don’t know how that works. But for me —

Cheryl [17:55]: I don’t either. Some people are lucky. Some people, the diet stuff works — all I can say, it works for some people, the diet, but it’s the majority of people need medication, that’s for sure.

Maria [18:05]: Yes. What has worked for me is medication. And truly, even though the methotrexate didn’t work fully, like I never felt the same again. Because also you’re expecting, I think — what most people is having is like, if I have a headache, I take Panadol, and it goes away. But the thing for us is that it never really goes fully away. There is always, even though you’re taking medication, there is always like a little bit of ‘there’, I don’t how to explain it. But yes, there’s always something going on.

Cheryl [18:42]: I think so. Yeah, I mean, I think it differs. I think the idea of full medicated remission, or unmedicated remission, is that you don’t have any, you know, inflammation due to the medication and stuff. But for the — for a lot of people like us who’ve had it for a couple of decades, yeah, you might expect to still have some kind of flare ups here and there. 

Maria [19:02]: Yes, yes. Yeah. That’s true.

Cheryl [19:06]: Oh, yeah. Was there anything else you wanted to say about the diagnosis experience or your initial kind of adjustment period?

Maria [19:13]: My adjustment period, I took — I probably, the first five years, I would say, is learning experience, then you learn how to master it a little bit more. And sometimes — oh, at the beginning, I swear, sometimes I used to say to myself, “I cannot do this anymore. I don’t want to live like this. This is horrible.” And there were other days where I was more optimistic. I’ve said like, “If I don’t do this, who is gonna do it for me. So, I better get this thing going on and do the exercises, and try to do the best that I can. Take the medication, do everything that I have to do.” But that doesn’t mean that I always felt like that. There were some very sad moments in these five years of understanding what this is all about.

                            Also, and I wanted to add, because I feel that we, at the time, we didn’t have any information. I remember leaving my diagnosis with the little that they give you, like the booklet and I’m like, “Where am I supposed to go now? What am I supposed to do?” And if you — if we use Google or whatever, I don’t think Google even existed. But anyway, suppose that you search it on that Net, there was really nothing. There was the same information that the doctor gave you in that booklet, that’s what you would find on the Internet. We didn’t have the chance to speak to other patients. We didn’t have this at all. So, this has been a huge difference for everyone, like social media. And even though that I don’t have you next to me, or — I know that I can contact you, “Cheryl, I’m in a horrible situation. Help me out,” and you will get to work. We didn’t have that before. So, you have a great time and opportunity now to use this tool, and to make the most of it. Yeah.

Cheryl [21:07]: It’s so great. It really is. If you’ve lived through not having social media and technology to connect, you know, it’s just hard to imagine. It’s hard to explain to people who have had it their whole lives, like younger people, you know, the people who are 21 today getting diagnosed. The world is totally different for them, you know. They can immediately, within an hour of their diagnosis — I mean, I’ve seen people do this on Facebook groups, or Instagram be like, “Oh, my gosh, where’s my people?” like, “Where’s my tribe?” you know, “Where are my other people going through this?” And you can — and it’s not all sunshine and rainbows. There’s definitely problems that I’ve talked about before, too. And I’m sure you have experienced some downsides. But, um, but yeah, what was I gonna say — oh, yeah. And then when you were talking about, you know, the adjustment, I mean, I would say, like adjusting to your diagnosis. I mean, to me, it’s an ongoing process, right? Because I’ve — yeah, by the time I adjusted to being a person in my 20’s, with it, I was then in my 30’s. And then I was like, “Okay, well, I’m at a different stage of life, you know, I’m getting married, I’m gonna have a child,” like, this is — everything’s constantly something new to adjust to, you know. So, did you have the same thing?

Maria [22:14]: Of course. And we were the same, we had the illness throughout our adulthood, and all our years in university, and then getting married and everything. And yes, motherhood is a big part. Like, being a mother, adjusting to that. That’s a whole different — we could make another — [Laughs] the challenges, just individually about that. But yeah, it is complex. And that is also that adaptation. It’s like a readjustment; they change the medication, they change everything, you change routines, and now you have a baby. So, that’s even more complicated, because you have to now deal with a little person that now depends on you. So, yeah, it is a whole different thing. Yes, as you say, it’s ongoing, and things keep changing. And for me, it also has been like, if somebody would have told me at the beginning where I was feeling horrible, “Maria, one day, you’re healed, and you’ll be whole again, you’re gonna feel good,” I wouldn’t have ever believed them. I would have said, “You’re a liar. I don’t see myself getting better.” I just couldn’t see it.

                            Because sometimes what I do feel with chronic pain is like a big wall of, I don’t know if it’s negativity, I don’t know what it is. It’s like a black thing that doesn’t let you see beyond the future. It’s like, really hard to see past, if you have the illness not on control. This is what I’m saying. If your illness is out of control, it’s really hard to see your future ahead, or even to see yourself as getting better. So, my advice would be work on that. Work on your mental health, work on how you’re going to develop in this illness, and how the illness is going to develop as well in you. Because if you have a mindset that, “I’m going to exercise every day, I’m gonna try to take the medication every day, I’m gonna eat well,” I’m not saying that all dies, but yes, eat well and take water; it definitely helps. It helps.

Cheryl [24:20]: So, yeah, I want to make sure I get the linear part of the story correct in my brain. So, you got the diagnosis, but you were only put on and NSAID’s which are like anti-inflammatories initially before you came to the United States. Is that right? 

Maria [24:38]: I was on methotrexate. I went to the US with methotrexate. That’s another story. But my insurance got rejected because I also have asthma. So, I didn’t have insurance. So, basically, I was trafficking — sorry to the US — but yeah, I was trafficking my medication to the US. Anyone who traveled from Caracas to Miami, I would ask them to bring me medication in a little bottle. And lucky for me —

Cheryl [25:08]: But wait — oh, so, you couldn’t get it —

Maria [25:11]: I couldn’t purchase in the US if you don’t have any insurance, or if you’re not registered because I was an international student. One of the things that you need to realize is that if you travel, you need to first go to a doctor to get a prescription. So, that wasn’t my case. And because I got methotrexate now, I couldn’t go to the doctor there, like the specialist. So, one of the reasons that I left the US is because my insurance was — I didn’t have insurance, so I couldn’t stay, especially with my illness. So, that’s one of the things, if you are traveling or if you’re — to another country, you need to know what, specifically if you have the illness, what are the requirements for you to get the medication in that country.

Cheryl [25:59]: Oh, yeah. Oh, yeah. 

Maria [26:01]: And yeah. And one of the things in the US is you need to go to the doctor, you need to get a prescription from the doctor, and then you can buy it.

Cheryl [26:09]: I thought that students would at least — international students — I thought, would be eligible for student insurance? I guess not.

Maria [26:17]: Yes, yes. And the thing is, that insurance got denied. Because I have asthma. 

Cheryl [26:23]: For just methotrexate? That’s — oh, my goodness.

Maria [26:26]: No, no. Because I’m asthmatic. I have asthma. 

Cheryl [26:28]: Oh, okay. 

Maria [26:30]: Asthma is one of the dumb things that most insurances say, “No, I don’t want this person.” But I either include it or I don’t include it. But I said I decided to say, “Yes, I have asthma,” because what if I get a reaction there? Yeah. I had no idea. I was very young. Yeah, that happened to me. So.

Cheryl [26:51]: Okay, sorry. No, I just want to make sure because I think one of the things that, yeah, part of understanding managing your disease is, like we mentioned earlier, you know, getting early care and being followed by, you know, a rheumatologist is so, so important. And it’s hard if you’re trying to be a young person traveling. I mean, when I was 22, I volunteered in Belize for what I thought was going to be three weeks, and I was on Enbrel at the time. And I ended up extending it to three months. So, I had brought three weeks of Enbrel, and then I was able to get — and this is, again, from having a lot of privilege in my family resources. My mom, actually — or my doctor in Seattle — renewed it for three months. And then my mom flew — because you can’t ship it. Yeah, you could not ship it, because it’s like — 

Maria [27:37]: Yeah. Exactly. 

Cheryl [27:39]: Yeah, so, she flew with it on her carry on in 2005 to Belize, and I was able to stay. And then, a couple weeks later, there was an electricity outage, and the medication has to be refrigerated. I was like, “Oh my gosh, all that work.” And it’s gonna be like $10,000 of medicine down the drain. But then, luckily, they fixed the electricity. But anyway, you know, it’s all those things. Like, okay, you know, everyone wants to live your life to the fullest. And that’s the goal that the medications enable. But I think sometimes health providers forget how complicated these things can actually be. It’s one thing to say the medication can change your life. And it did, in my case, right. But there’s still a lot of hoops to jump through. And like, in your case, if you’re trying to get a degree or do things that require a longer stay.

Maria [28:25]: Yeah, for me, I was lucky as well, because I was taking this on tablets. So, I was able to study and — except for the side effects, which was, for me, a stomachache and the tummy was pretty bad. That was one of the downsides. But I was able to have the medication and I think it brings a lot of tablets in the legal thing. But, um, so yeah, during that time was only methotrexate they stayed and no prednisone, which would have helped me out a lot during my period of studying and that timing, at the beginning where you want the illness under control, especially when you’re young. I think it’s very hard. But yeah, that’s one of the things that you have to keep in mind. Also when I moved to Australia, I also had in mind I had to do here in Australia. And it helped me out that I had that experience from the United States to figure out what I had to do here. But yeah, I was put on the first medication was as well methotrexate, here. And then later on in life, after I have been a citizen, I was able to request a biologic, which I think it was Orencia at the time. But that was after my pregnancy. So, for years.

Cheryl [29:52]: Okay. Because that was my next question. Okay, let’s skip ahead, for times sake. And so, okay, you somehow met your husband, and then got married. And then — yes, um, did you meet him in the United States, or Venezuela, or Australia? Where’d you meet him?

Maria [30:10]: No, so, I went back to Venezuela and I met him like a week after I arrived to Venezuela. After a month then, we started officially dating, so yeah, it was — it was fast. 

Cheryl [30:26]: So, wait, what brought you to Australia? 

Maria [30:28]: Oh, well, the situation is no good. There’s a dictatorship. So, we’ve been trying to figure out a way so that we can have a family, live my life. Also, we’ve been seeing a scarcity of medication in Venezuela, because of all the political situation. So, this was very scary for us. We were both like, maybe we should rethink how we’re gonna protect ourselves in our future because I could see it coming already. Because I was already — I went to the US, I went back, and we stayed there for four years. And we applied to Australia and like, so. But during those four years in Venezuela, I was able to live the scarcity of medication. Like, imagine going through your pharmacy and asking for methotrexate, and they tell you, “No, there is nothing here for you.”

Cheryl [31:16]: It’s so scary, yeah.

Maria [31:19]: And one time, the scariest part was I had to go to — so, they stopped selling it in the actual pharmacy. And you have to go like through the official where they sell all the drugs. I don’t know how you call it, it’s like the bank of drugs, something like that. It’s a very dodgy place. Well, anyway, I had to go there. And one day they told me, “Oh, no —” because at that time, I was injecting methotrexate because of my [inaudible], so just to improve that. And they said, “Oh, no, all we have is this,” and they gave me like a full — of like, chemo thing that they get patients from cancer, I don’t know how many milliliters they have. It was this big. And they tell me, “This is all we have for you.” And I was like, oh, my God, I can’t — I couldn’t believe it. Yeah, I think that was the last time. Yeah, I said, “We have to go. We have to. I cannot live like this. This is not for me.” So, we moved to Australia, and we decided to have a kid. And in here, we were already residence, so that my girls would be Australian, because we also wanted to give them that second chance in life and not be only Venezuelan. And we decided to have them. This process was — and I would have to go back to my 17. When I was 17, I was already — I want to be a mom. I had my nephew. And I remember the first time I carried him, I was like, “Oh, I want this for me. I want a baby.” 

                            But at the time, I didn’t I didn’t have anything. So, then at 21, not only they tell you that diagnose, that you have RA, rheumatoid arthritis, but they also tell you, you cannot get pregnant with this medication. That’s the — that’s the other message that I got. The one of you could be on a wheelchair, and you cannot get pregnant. Those who are the ones that got stuck in my brain forever. I was like, “Oh, my God, this is horrible,” my dream of being a mother and I wasn’t even thinking. I hadn’t met my husband yet. But still, just hearing those words is really hard. I don’t know if it happened to you. But for me, it was shocking.

Cheryl [33:37]: I know that mine explained that as long as you’re taking methotrexate, you can’t get pregnant, but you can go on other meds. You can go off of it and get pregnant. Again, my doctor was very optimistic. She’s a good match for me, but also at times we both tend to be like…

Maria [33:54]: No, no. My doctor will also tell me this, like exactly the same. But I saw my illness getting worse and worse, “This is impossible. How am I supposed to care for a baby?” I’m feeling just awful.

Cheryl [34:09]: Yeah. That happened to me. Like, that happened to me after my first born. I was like, “How? How am I ever going to do this again? How can I ever, ever do this? I can’t.” Well, now I only have one. So, I didn’t do it again. But yeah, it was — it’s a legitimate concern when you’re — when you can barely take care of yourself.

Maria [34:27]: So, I didn’t question myself of having kids. Not even — I did met my husband. And that’s the other thing, telling him. Well, sorry, I know we’ve just met, but if you want to go ahead with this, I don’t know if I can have any kids. I don’t know. Because I didn’t see myself caring for a baby at the time, of my 26, I think it was. I was feeling very bad. So, it’s hard to present that to somebody, like — oh no, I was 23 when I met him, sorry. And I said, like, “Oh, sorry, I need to tell you this. I know you want to date me and everything, but I don’t know if I want kids,” or, I didn’t know yet. After I had dreamt about it, I felt that my illness was like, pushing me away. I don’t know. That happened to me. I felt that I couldn’t see myself having babies at the time. But then, in Australia, I was feeling fine with the methotrexate. I don’t know what happened to me. Maybe I was more relaxed in this country. I could trust my doctor. He said that I was fine, that I could do this. And I said, okay, let’s do it. And that was when I was 31.

                            I had my baby at 32. So, yes, everything, for me, I have to say, went well in maternity. Like, my delivery, my pregnancy, everything went well. But I did everything in pain, because my markers in my blood were fine. But I wasn’t feeling fine completely. I was always with flares, I could feel my hips hurting during my pregnancy, which was like that adjustment from the from the hip side. I don’t know. I didn’t feel fine during my pregnancy. But still, after I had my first baby, I decided to go for this, for my second baby. Even though, yeah, even though my doctor said like, “Maybe you should go back into methotrexate, wait a few years. And then let’s do this again,” and I was like, no, that’s not gonna happen. Because I don’t see myself going through this again. I couldn’t see myself. Well, it was something like similar to what happened to you. I couldn’t see myself getting pregnant again if I had waited too long. If I had waited two years, I would have said no.

Cheryl [36:59]: Yeah. So, and how close are — so, you have a one seven-year-old, right?

Maria [37:04]: Yeah. An eight-year-old and a six. So, they are a year and ten months? So, almost two years apart.

Cheryl [37:11]: I — yeah, we actually tried, briefly, to have them that close. And then — and I kind of joke, I don’t think I told this on the podcast before — but it was like, as if – you know, I’m an atheist. But if there was a God, it would be the God saying, “Don’t do this.” Because the first month we tried, that month, I discovered a pilonidal cyst on my tailbone, which had to get surgically removed. And I had delayed wound healing. And six months later, that was almost on the mend of being healed. And then I got in a horrible freak car accident and had a concussion. And I was like, definitely no.

And then right when my whiplash injury and concussion were starting to feel a little better, my son and I contacted a horrible, horrible GI bug. This is in 2017. I lost like 15 pounds. I ended up developing gastroparesis again, and he was hospitalized for dehydration. And then the year’s like ticking — and then it’s like probably the same with you, so I was like, okay, well, I’m like 35, 36 — I can’t remember the ages, but it was like, it got to the point where I was like: if I’m not feeling substantially better about my 38th birthday, because it was a long recovery from all those things. Each time, it’s like a — each time something new adds on, it exponentially, right? And I’m not even impacted by rheumatoid arthritis, my rheumatoid arthritis was fine during all of this. But it was the other things. And it was like, I was like, I’m waiting to my 38th birthday. And at that point, if it’s not substantially better, I have to call it. Like, we have to call it as a couple. But also like, ultimately, it is my- Anyway, so sorry.

                            Long story short, yeah, we — I mean, if we had gotten pregnant, that month that we discovered a pilonidal cyst, like when I went into surgery, they had to be like, “Is there a chance you’re pregnant?” and I was like, “Yeah,” you know, but then it wasn’t, you know. So, they didn’t do the full-on anesthesia. They did like some other weird anesthesia that worked, because I don’t remember anything.

But yeah, so, you know, I mean, we were willing to like — at that point, my rheumatoid arthritis was under control enough to where it was like, okay, we can do this. But then, by the time the other things layered on, it was like, no. And maybe if I was 10 years younger, you know, but now I’m trying to also be an older parent with more health issues. Yeah, anyway, so then eventually the rheumatoid arthritis did decide to have its turn to get worse again. So, it really was, everything was taking turns. I’m sorry. I’m talking too much about my story. But no, I think I’ve heard other people say the same thing too, where it’s like, “Just have them closer together so that you just get all those early days over, together.”

Maria [39:50]: Yeah. Yes. So, I did have those — the babies together. It was a good thing for me. It was — that’s why I recently wrote an article for the magazine that I’m writing, and it says — it’s called [inaudible], because it’s just being realistic.

Cheryl [40:09]: Can you say it again? Can you say it again? 

Maria [40:13]: It was about, “Success, but in pain,” like my story is of success. Like, I was able to have the baby, everything went well on the maternity side. I was able to breastfeed, the delivery of the dream, like everything that I planned went well. But I was in pain from my rheumatoid arthritis. And the flares afterwards, like after that, after delivery, were horrible. Like, I couldn’t hold the baby properly, it was a lot to deal with. Plus, you’re also in pain from other things like the delivery for itself, you know, all the maternity stuff, which is kind of uncomfortable at the beginning. But for us, we have the pain which we need to get like, under control.

And my decision of breastfeeding didn’t help at all. Because I had like that mindset, “I need to breastfeed. I’m going to do my best that I can.” It was good. I am saying it was like a dream. It was — everything went well, in that sense. But it was painful for me and my arthritis. And because, also, I didn’t have help, external. I would have hoped to stop breastfeeding maybe three months or six months if I had to, and then I ended up doing it for eight months. Because I couldn’t get it passed off the baby; I was so attached to the baby. And she used to cry, and I couldn’t hold the bottle properly, and she wouldn’t bottle. It’s crazy. That part is a huge. It’s a whole world, the breastfeeding part.

In the sense of maternity, yes, it went well, but it is painful. And that’s one of the things that I see in this state and pain, “My situation is different to other mothers who might be healthy,” is a good way to go. Because then you will have your support, you will get help from occupational therapists that I wish somebody would have told me that. Nobody told me that, and it would have been a whole different world.

Cheryl [42:27]: My next question was going to be — because I love how you’ve woven in throughout your story, like different ways that — different experiences that affected you mentally, and I forgot to ask like, did you ever see a formal psychologist or counselor? How did you get help?

Maria [42:44]: I read — I read a lot. Because I was diagnosed right before my arthritis with depression, right before it. And I didn’t — it didn’t go well with that psychologist. I didn’t feel comfortable. And for me, that is a major thing when you find someone, especially for us; who understands things and how to manage it. So, I removed myself from this psychologist, and I tried my best to keep positive. And because I left the United States, that didn’t help me at all. Mostly, for me, what has worked is keeping myself going to a study — a study group where you can learn about all these stuff, and control yourself.

But mostly exercise. Physical exercise, I think is like, for me, my is body fit and my mind — what I try to do is to work it out myself and read a lot. Read a lot. Because at the time, for example, I couldn’t — when I went to the US, I couldn’t afford somebody to see easily. And I think this is the thing that you understand — I’m on remission, and being on remission is like a whole different world. You feel that everything gets into place, everything in your life. It is like going back to your old self. It’s like you feel more, “Oh, this is how I used to feel before the illness.” And trying to do is read a lot of things, like follow a lot of podcasts if you don’t have the experts accessible for you. There is a lot of podcasts on psychologists where you can find terms that can help you out. If you’re really struggling, you cannot get out of bed, if you feel that your life is not worth it, that’s when you need to go seek for help. But I have always pushed myself beyond that. Like, I always try to tell myself, “I can do this. I can do that. I can work this out mentally,” especially. But what I do believe is that if you really struggling, if you cannot wake up or get out of bed, look for like a mental health advisor.

Cheryl [44:58]: Yeah, I mean, and I think something that I learned and, you know, correct me if I’m wrong, but at least in the US, like, when I went — when I first started going to therapy when my son was almost a year old, you know, I actually was surprised after. I thought, oh, — I thought you had to be really, really bad to qualify for therapy, you know, but I stayed on for a long time. And she’s like, “No, you know, you’re just having general anxieties about life. And no, you don’t have to wait until you’re like wanting to, you know, like until you lose all hope.” You can actually go to, at least, again, and depending on your insurance, maybe, go get therapy even, you know, even if it’s not that severe.

I wanted to make sure I asked you about something really cool that you created. The AUCH — I don’t know if I’m pronouncing that right — AUCH.revista magazine? 

Maria [45:47]: AUCH. AUCH.revista. So, ‘Auch’, how do you say it in English — onomatopoeia?

Chery [45:55]: Oh, onomatopoeia?

Maria [45:56]: So, it’s the same as ‘Ouch’ in English, like when you say onomatopoeia, yeah. Yes. So, but in Spanish, is ‘Ouch’ with a different writing, it’s A-U-C-H. And ‘Revista’, it means ‘Magazine’. So, it’s the ‘Ouch’ for the cry, and ‘Revista’. I created this magazine with the hopes to like to build conversations between patients. I saw that there is a lot of information in Spanish when it comes to medical terms, and there is a lot of people interviewing doctors, patients who interviewed doctors and specialists, but I couldn’t see anyone speaking to other patients, and talking to them, and making more like a friendly conversation between people who have the illness. And that’s what I wanted to do. So, I created this one where I allow people from — people who are feeling really bad to those who have the illness under control. And we all get together and tell our stories, and with a hope that people — because I feel, when you read individual stories, I know you have — I heard you said, “Don’t speak to the individual stories,” and I think it’s true.

                            But I also feel there is like this companionship. Like, when I listen to somebody tell me their story, I feel, “Oh, my God, this — I’m not alone in this, somebody else is struggling with the same thing.” And probably, especially in illness, it might not be next to you. That person could be from a different city, another part of the world, and it’s nice to see how we are able to connect through social media and see each other. And I know that there is a lot of people going through the same, either with the maternity process on the illness, either with the disability, some limitations from the illness; it’s like the same struggle. For me, it’s funny because I also speak English and I get to see groups like you, like the ones that you have, your Facebook page, but also in Spanish, and everyone struggles with the same situation. So, there is a lot of common grounds, I would say. And that’s why I wanted to get the magazine’s together, and help the people, really.

Cheryl [48:23]: It’s so wonderful. And I think there’s always a place for human connection and storytelling, and yeah, the only thing that I tell people is just be careful applying someone else’s medication information and medical management to yours, because, you know, what one doctor prescribes one person is based on their specific case in someone else’s case. Like, their medical history is different. But certainly, for like just what you said just so beautiful, you know, the stories and the need to feel like you’re not alone. The stories are really the only answer to that, right? Is the connection. So, yeah, I love it. How do I access the magazine? Is it online?

Maria [49:03]: So, everything I made the magazine online so that everyone in different places could follow it. The magazine is in Spanish, I have to say. I haven’t just yet decided if I’m gonna do it in English. There is a great magazine in English here in Australia called ‘Spoonie’. You can check that one out. It’s in English. But for this one is in Spanish.

And it’s more like telling stories, conversations but also like, I focus on a subject. Like, one magazine was all about art and how art and creation can help us. The other one, the first one was the first diagnosis and what tools helped me. Like in the first one, I said about, I talked about the Spoon Theory. I also, in another magazine, talked about like the hacks that we can use to improve ourself. I think a lot of people don’t even know them, especially those who have been recently diagnosed. They’re completely lost. I didn’t know occupational therapy existed until recently. And I was like, “Why’d nobody tell me about this?” It’s such a helpful — I think you’re probably one of the most helpful tools that there could be, is someone like you. 

Cheryl [50:16]: I hope so.

Maria [50:18]: Like, you know, what works, what doesn’t work. What I tried to do is also like interview people like you that can guide people to you. That’s what I’m trying to do with the magazine. In this magazine was all about maternity and parenting with the chronic illness. And I was able to conduct people like also to Mariah, who has Mamas Facing Forward. And the idea is to get people to know that there are these resources, but sometimes they don’t know where to find the as well.

So, I get a lot of articles that I can find them put them in the magazine, statistics of what is going on with the illness at this time, that changes often, but it’s good to have those. Because, as we said, it’s like it gives you like a more holistic type of view of what is going on in the in the world and with the illness. The magazine, everything is online. So, basically, you can find them either through the platform ISSUE, or through the website, with a website blog, as an e-pub, as an interactive magazine. So, it’s auchrevista.wordpress.com. So, AUCH.Revista in Spanish. For those who speak Spanish and follow Cheryl, you can find it there. And also, I’m always looking for illustrators, people who like to join us in this journey and help us out. I find that illustration also helps us distract our mind a little bit off everything that is going on with the illness, and I think it’s a great way to distract, and entertain ourselves, and make fun of the illness as well. So, I also do illustration myself, and I put them in the magazine where I have like conversations between me and my arthritis. It also has helped me as well to get to know everyone, really, as well. You, all the people that have collaborated in the magazine. So, it’s been quite interesting.

Cheryl [52:18]: Oh, that’s so great. No, I love the illustrations. There’s so — yeah, picture’s worth a thousand words, sometimes, for sure. No, it’s so wonderful. I think there’s such a need for, like you said, more real, down to earth stories in other languages other than English. And I know that on some other episodes, people have talked about, you know, the need for just more cultural representation too. The online chronic illness communities I’ve ever seen are primarily, you know, white, American woman, you know, as opposed to a diversity. So, I think that’s so important that you highlight different people as well.

Maria [52:58]: Most of the information is in English in any topic. So, I think it’s important also, for people to understand that it’s important that they know English, and they can access — and they will have access to so much more as well. That’s what I’m always telling followers in the magazine that, unfortunately, yes, I found this great article, but it’s in English. So, you’re going to have to do your homework and, you know, translate it to in Google and see how you can apply to your language. But yes, at the end, English is like the principal language of the world. And it’s not that it’s bad. It’s just that there’s no information in Spanish. So, I wanted to also do that as well. Especially for moms. For maternity there is nothing when it comes to chronic illnesses and maternity in Spanish, there is very little out there. So, yeah.

Cheryl [53:52]: Well, it’s really — I think it’s amazing that you just went out and created something that, you know, I’m sure so many people are, you know, benefiting from it. And I wish we could talk longer, but I have to start wrapping it up a little bit. 

Maria [54:06]: No, no worries. 

Cheryl [54:07]: Yeah. Is there anything else you wanted to tell the audience or any message you have for people listening?

Maria [54:13]: Well, if you’re recently diagnosed, I say educate yourself, find about the five stages of grief because when you can understand your emotions, then you know where you’re standing. Like, “Oh, I’m feeling angry because I got diagnosed,” or, “I’m feeling grief, or sad because I cannot do the things that I used to.” It’s important to understand your emotions when it comes to this illness because stress triggers certain hormones that affects our brain. So, everything is connected in the end, so it’s important that we understand this. Also, to understand the Spoon Theory, which I think it’s a way — a great way — to explain to others what is going on with you with energy levels, with pain levels. I think that was a very basic tool for me to help others understand what I was going through. And to be honest, at the end of the day, change has to come from you, from within. It’s like Viktor Frankl, from the man — the man —

Cheryl [55:14]: ‘Man’s Search for Meaning’. That’s one of my favorite books.

Maria [55:17]: ‘Man’s Search for Meaning’, yeah, is one of the best books that you can read, highly recommended it. But he says that it has to come from you. So, that would be my message. Like, it truly has to come from you if you want to improve, if you want to change yourself, and if you want to keep optimistic in this journey. Like you say, it’s your journey with the illness. 

Cheryl [55:48]: Yeah, the ups and downs. 

Maria [55:39]: In the roadmap. Yes.

Cheryl [55:41]: Yes. In the roadmap. Oh, my gosh, yeah. It’s a never-ending road.

Maria [55:47]: Yeah, it’s true. It’s a never-ending road. And we keep learning I learned a lot from other patients, I learned a lot from what you see on the Internet. And it keeps changing. Like, you didn’t used to all the goals, and now we have them and it’s going to change everything again. So, we’ll see. We’ll see where this goes. And the more we speak about it, the better is for everyone. Because we feel less alone. Don’t — and also, don’t isolate yourself. Don’t feel that you have to keep yourself, uh, seek for help. That’s basic, I think.

Cheryl [56:27]: Absolutely. No, that’s so true. I think there’s definitely a toughness in the people I know with autoimmune diseases that we get — you’re so used to being in pain and so used to being fatigued that we forget that it’s okay to ask for help, because we’re so used to pushing through it, you know. So, don’t be afraid to ask for help, I think is great advice. Well, thank you so, so much again for taking the time out of your busy day with your two beautiful girls and your husband.

Maria [56:59]: Thank you, Cheryl, it’s been great talking to you again, and I hope we can do this again. Anytime that you want. Let me know. 

Cheryl [57:05]: Yes. We have so many different things — yeah, so many things that we covered. I can’t wait to hear people’s response. Bye-bye for now. 

Maria [57:13]: Bye-bye, Cheryl. Bye. 

[Ending music]

Thank you so much for listening to today’s episode. This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.