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whats it like to be on methotrex
Patient Stories, Podcast

What’s it Like to be on Methotrexate for Rheumatoid Arthritis or Psoriatic Arthritis? Episode 110 Arthritis Life Podcast

5 months ago
75 min read
2 comments
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Summary:

In this episode, Cheryl checks in with a panel of patients who’ve taken methotrexate for rheumatoid arthritis or psoriatic arthritis. This is a follow up to Episode 45: “What’s it like to be on Methotrexate for Rheumatoid Arthritis or Psoriatic Arthritis?”  (from 2020) and episode 58: “What’s it like to STILL be on Methotrexate?” (from 2021).

Paulina, Jenny, Ali, and Ananthi share what’s changed and what has stayed the same with their medications, including whether they’re still on methotrexate. They also  reflect on how they’ve navigated the ups and downs of chronic illness life and share how grief and joy can co-exist. They also highlight the importance of  finding a supportive community with shared experiences. They also discuss their choices around how much to share on social media about their experiences.

Paulina, Jenny, Ali, and Ananthi each share wisdom that has guided them along this nonlinear journey; encouraging self-care, advocating, celebrating small victories, and approaching life one day at a time. They conclude with a discussion about how to balance acceptance and adapting with a “fixing” mindset.

Episode at a glance:

  • Methotrexate and treatment plans: what’s changed and what’s stayed the same?
  • Pregnancy and medication decisions: Jenny and Cheryl discuss how their pregnancies affected their treatments, as methotrexate is unsafe during pregnancy
  • The impact of a supportive community: the panel reflects on how important it’s been to find others who “get it”
  • The coexistence of joy and grief: the panel reflects on how important it is to make space for both joy and grief
  • Coping toolbox: each panelists shares what’s in her coping toolbox, including reflections on how living “one day at a time” helps cope with unpredictability
  • Balancing Chronic Illness and Identity: Some participants share the challenge of balancing their identity with chronic illness. They expressed the importance of finding a balance between addressing health needs and living a full life.
  • Social Media and Mental Health: The discussion touched on the impact of social media on mental health. Participants shared their experiences of navigating online spaces, stressing the need to set boundaries and avoid being consumed by the negativity that can sometimes arise.
  • Acceptance and Adaptation: The conversation delved into the journey of acceptance and adaptation to life with chronic illness. Participants shared personal strategies for navigating challenges, such as making choices that enable a better quality of life and adjusting plans based on energy levels

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! 

Full Episode Transcript:

Cheryl:  0:00  

I’m so excited to have a whole panel of speakers today. It’s a little bit of a family reunion for those of us who were on the original ‘What’s It Like to Be On Methotrexate’ panel way back in 2020. So, now we are doing a three-year follow up check in to see what has changed in our treatment plans, our diagnoses, our lives. Some of us have created humans in that time, aka had baby, some of us have moved. Some of us have been on multiple medications. So, I’m so excited. I think we’ll just start with introductions/reintroductions. Can you share, starting with Jenny, where do you live? And what is your relationship to arthritis?

Jenny:  0:41  

Yes, so my name is Jenny. I’m living in Iowa. And I actually have been living with psoriasis since I was 12. And with psoriasis, some people who have that go on to develop psoriatic arthritis. So, in 2019, I was diagnosed with psoriatic arthritis.

Cheryl:  1:00  

Okay, great. Thank you. What about Ananthi?

Ananthi:  1:05  

So, I’m Ananthi. I am — you can probably tell by the accent that I’m living in the UK. So, I live a few miles out of London is probably the best way to describe it, a little market town. Quite cute. So, I have rheumatoid arthritis. I got diagnosed in 2020 in the middle of the pandemic, just to add the experience.

Cheryl:  1:29

Wow. Yeah, you were freshly diagnosed when we first talked. Yeah. Thank you so much for coming back. Yeah, what about Paulina?

Paulina:  1:40  

Hello. I’m Paulina. I live currently in Munich, but I am from Poland. Raised in England, a little story in that, and I was diagnosed in 2014. So, it’s been a little while that I’ve been on it. And since then, yeah, it’s been a bit of a journey.

Cheryl:  1:57  

Yeah. With rheumatoid arthritis, right.

Paulina:  2:00  

With rheumatoid arthritis.

Cheryl:  2:02  

Yeah. Great. Thank you for being here. Also, what about Ali?

Ali:  2:09  

Hey, so I’m Ali. So, I actually don’t have a home right now. I’m currently a nomad because I’m travelling with my boyfriend, which is why I’m recording this in a car right now, because I’m in a new place every other week. But so, I don’t have a place right now. But my home base is New York, North Carolina. So, we’re going back and forth from there, and I’m in the city a lot. But I got diagnosed with juvenile idiopathic arthritis at the age of 15. So, I do have rheumatoid arthritis now, and I’m 30. So, I’ve had it for 15 years.

Cheryl:  2:40  

Wow. And you’re at the exact halfway point like I am because I’m 20 — I got it, I’m not 20, I got it when I was 21. And I’m 42. Sorry. So, there is something really interesting about being halfway through your life with the condition that you have. And so, I think it would just be helpful to, for each person, to check in about, you know, your treatment story or your treatment saga. Because often, it is, you know, what treatments have you been on in the last couple years including methotrexate, or if you’re not on methotrexate anymore, why not? Feel free to just share any highlights and lowlights of your treatment journey. Jenny, you could go ahead and start.

Jenny:  3:24  

So — wait, when we did this in 2020, I actually wasn’t on methotrexate yet. So, that was kind of like, I was the one in the panel that was afraid of starting it. And so, it really helped me to be in it, to be like hearing from all of you guys who were like veterans with this. And I was like, okay, actually seeing people that take it. And, you know, it’s not something that you see a lot day-to-day, like, I don’t really know anyone in my life that has psoriatic arthritis day-to-day, it’s like mainly my internet community is who I know that has it. So, that was a major turning point for me. I was so afraid of starting it that I put it off for longer than I wish I would have at the beginning. It didn’t end up hurting anything but it just gave my joints more time to, you know, wreak havoc on my body and stuff. So, in 2020, height of the pandemic, I did start methotrexate. And that was also something that was really hard at the time because I was like, okay, this goes against everything that I think is, like, makes sense in my brain. Because I’m like, okay, there’s this new virus out. I don’t know anything about it. Nobody knows anything about it. And you’re telling me that you want my immune system to be knocked out while this thing is going around? Like, it just made no sense to me. 

But then, I have a great rheumatologist who talked me through it and kind of like seriously sat with me for one appointment for like a full hour and talked me through it, told me that she’s also dealing with rheumatoid arthritis, and that was really helpful to hear from, too. So, finally I started methotrexate. And then, that ended up really not being enough. Methotrexate for me was kind of like is a really delicate balance because I did end up having a lot of fatigue from it and some headaches and things. So, not going at too high of a dose to make those symptoms worse, but then also, a high enough dose to help my joints out. 

So, they decided to add in Humira. Once we found out the good dose for methotrexate just to give me a little extra boost, we added Humira. That worked great for a little while, I started to get back to being able to jog and like one of the things at the beginning when we first did that meeting, I was like, barely walking in the morning. Like, it was so bad that I was like, I don’t know, limping and the first four hours of my day was just horrible. So, that changed my life, doing the methotrexate and Humira. And I credit that a lot to this, like, panel that originally, when we did that, because it was really hard for me to start that. 

So, then we did, I kind of did the methotrexate and Humira for a while and then kind of fast forward into, I think it was 2022, end 2021, I started planning for like having a baby. And methotrexate you can’t be on when you’re trying for a baby. It’s fine to go off of it and get pregnant. It doesn’t have any, like, negative effects after that. But you cannot be taking it while you’re pregnant. So, I did stop it. I think I stopped it in like January of 2022. Or I don’t know the timeline of it, but I stopped it three or four months before we tried to get pregnant. And then, in that time, instead of being on methotrexate and Humira, I was given an option to start, to keep Humira because that one’s safe for pregnancy, too. But Cimzia is one that is proven. They have a lot of studies behind it that it doesn’t cross the placental barrier. So, it’s a little bit more studied. Not necessarily safer, just more studied. 

So, I decided to switch to that one. I didn’t know if it would be great. And so, that was kind of a hoop to jump through, too. Like, I didn’t know if it would push me back a little bit, too. There’s always that nerve racking thing when you change meds. It’s like, is this going to help me or is actually going to make it worse? So, I ended up switching. And Cimzia has actually been the best med that I’ve been on so far. I don’t know, you know, there’s a lot of changes with pregnancy and stuff. So, I don’t know if it’s like the changes with pregnancy combined with the Cimzia, or if it’s the Cimzia that’s the best thing. But right now, I’m on Cimzia. And that’s kind of the story of my journey. I guess I did leave out — I took Otezla, it’s a pill, before the methotrexate. So, I wasn’t on nothing, but I wasn’t on something that was working from the very beginning, so.

Cheryl:  7:31  

That’s helpful to know. Because yes, sometimes like in my pregnancy 2013, 2014, that was back before we had all the data that’s available now on the on the safety of many of the biologics, so I ended up going off Remicade after the first trimester, and then being unmedicated because I was in remission. But yeah, so the medication decisions around pregnancy are really, are really tough. I’d switched methotrexate for Imuran at that time. But I am going to link in the show in the notes, just for those of you who might be, you know, having more questions about medication safety during pregnancy, that there’s some great guidelines from 2020 from the American College of Gyneco — ah, American College of Rheumatology, not gynecology, on the rheumatic disease and reproductive health. And also, Mother to Baby is a really great website, which I’m sure you know, yeah.

Jenny:  8:23  

Yes. I, like, that is like such a good resource to have when you’re planning pregnancy, when you’re in pregnancy. Just because, you know, you do — I did flare during pregnancy, too. And I didn’t know anything, like, first time I’ve ever been pregnant. So, I was like, I don’t know about like Tylenol, ibuprofen, it goes through all that stuff. So, like things that you can take and you can obviously ask your rheumatologist, too. But it is nice to have that resource there.

Cheryl:  8:48  

Yeah, super helpful. And I appreciate you showing earlier about the hesitancy to start with the methotrexate. I remember you saying before, since you had worked as a nurse in oncology, I think that does give you such a unique perspective, you know, because you’ve seen these drugs being used in such a more severe case.

Jenny:  9:03  

Yeah. I always like to bring that up, too. Because the dose difference, like, when the FDA approved methotrexate it approved it as a chemotherapy. And so, the side effects were the side effects at that high dose. And I always like to give this — like, I remember one day without work and this is when I worked on the stem cell transplant unit and I believe it was for CNS, like central nervous system lymphoma, I was giving methotrexate I looked at the bag, and this is when I just first started methotrexate. I looked at the bag, and the dose was something like 16,000 milligrams. And so, we take 7.5 to 25 milligrams — if that’s my memory exactly, but 7.5 to 25 milligrams. So, the difference there, when it was approved for arthritis, the FDA didn’t really clarify that like those symptoms that they list are not things that you’re gonna see that much at the 7.5 to 25 milligrams. This is like, this is like 16,000. Like, that is so much more than what we see for that. So, yeah, I was a little nervous just because I had, that’s the only experience I had had with that, but totally.

Cheryl:  10:10  

Yeah. Yeah. And I know you’ve done some great work on social media like educating people that at these doses. methotrexate is not technically chemotherapy, although it’s the same medication that at higher doses is chemotherapy. So, one of those many paradoxes of rheumatology. 

Jenny:  10:25  

Yeah, it reminds me, too, of like, you know, we take ibuprofen and we take Advil, but we don’t take 16,000 milligrams. If you take that your stomach’s gonna start bleeding, you know. I’s like, we’re gonna have those big symptoms. Anything in a too high of a dose isn’t good. 

Cheryl:  10:40  

Yeah. Well, thank you so much for sharing. I know, I feel like we should do a separate episode all about like the pregnancy because I know people have so many questions on that. But for times sake, I’ll check in now with Ananthi. What has — and we actually have already done one follow up since 2020. But, you know, go ahead and share whatever you want from, you know, your treatment journey.

Ananthi:  11:00  

Okay, so when we had our first, when we first did this huddle, I’d only just been diagnosed a couple of months earlier. I’m trying to think — I think it was during the summer, July, August we did this catch up, perhaps. So, I would have been diagnosed March, April, but because of the pandemic, there was a huge delay, everything was closed. So, I didn’t actually get to see a doctor until the very end of June. So, I think on this panel, I’d probably been on methotrexate for about less than a couple of months at that stage. I’m still on methotrexate, but there has been a roller coaster, as I like to call it, the roller coaster of methotrexate in between. So, I was given a set dose at that point. I was on 15 milligrams. After a few months, I noticed that it was affecting my liver enzymes. So, as a reminder, when you’re on methotrexate, you have those regular blood tests, which they’re there for a reason. So, you’re looking at your, like, inflammatory levels, your full blood count, red blood cells, white blood cells, your liver enzymes, and your kidney enzymes. So, one of my liver enzymes was steadily creeping up to a point where it got flagged up with the doctor and I was, I’m a science geek, so I was tracking it as well and I was making my little graphs. 

But yes, so it got to a point where it got to a level of concern. So, I was asked to come off methotrexate for two weeks, and have another blood test. In that two weeks, everything completely reset. So, the liver went completely back into normal, which was amazing. And then I started on a lower dose, so I went from 15 milligrams to 10 milligrams, and that’s what I was doing. So, generally, with methotrexate, kind of a slow, it’s a slow burner. So, you don’t really know what it’s truly doing until about three- to six-months, I think. So, I was told to give it that chance. I was told to try it three months. So, I was having my bloods monitored regularly over that time period, my liver was happy, absolutely fine. For the first three months, pain levels, my joints were fine. But by the six-month mark, the pain started creeping up again. 

So, there was one other dose in between 10 and 15, it was 12.5. So, those are the five of the little tablets. So, that’s what I was given. And since then, that’s what I’ve been on. However, earlier this year, February March, I got a very big wrist flare which just didn’t go. It just decided to hang around for quite a bit, so I’m still in the 12.5 milligrams but they have added sulfasalazine alongside So, basically, I rattle when I walk because the sulfasalazine is like four tablets a day. My methotrexate is five tablets a week. So, yeah, I’m a walking rattle, but it’s all good. Pain levels so far, touch wood, are controlled.

Cheryl:  14:03  

Wow. So, the sulfasalazine has kind of made up for the wrist flare up. Your wrist is totally okay now?

Ananthi:  14:11  

Totally okay now, yeah. It was a struggle because it was my, I’m right-handed, it was my right hand. So, it was quite problematic. I couldn’t write; driving was a bit of an issue. But yes, that lasted quite a while. And it swelled up quite significantly as well. But yes, now it’s back to normal. Pain levels are okay. 

Cheryl:  14:35  

And this is a great example, like, even just between Jenny and Ananthi that usually the starting medication is methotrexate unless the person is actively trying to get pregnant. And then, there’s like a chart that the rheumatologist can fall on. Its ‘If This Then That’. If methotrexate doesn’t work either, they will add another of the traditional DMARD’s, disease modifying antirheumatic drugs, like sulfasalazine and Plaquenil. Or they will go to a biologic depending on multiple other variables. So, we already have kind of two different examples that you can get to the same end goal of feeling better either by adding a biologic or the other. 

Ananthi:  15:14  

Yes. So, in the UK, you need to have two failed treatments before you get put onto a biologic. So, my rheumatologist actually said to me, “Oh, this will be good. Because if this doesn’t work, then you can go on to biologic.” And I was like, wait, wait, don’t say if it doesn’t work, I want it to work. But basically, that’s the next step. He’s already hinted at me. If the same thing happens again, I will be able to move on to a biologic.

Cheryl:  15:41  

And that’s, it’s similar in the United States, and it is more driven by the individual’s insurance, sometimes coverage, because the medicines are so expensive. So, yeah, it’s a little bit, I know a lot of us feel frustrated about being like, shouldn’t the doctor just be able to tell you what they think is the right treatment. But I did, I’m gonna put this in the chat or the notes, too. There is a, there was a good study I saw that was like 50% of people with rheumatoid arthritis get into a good state of disease control with methotrexate alone, which that was actually surprisingly large amount to me. 

And it kind of reminded me that’s why they start with this methotrexate, because if you can avoid being additionally immunosuppressed, why not, right? Less medications, less side effects, less money that’s charged to the healthcare system and all that stuff. So, anyway, thank you. Sorry, I have to stop myself from rambling. But that’s, I mean, I think your example of the liver enzymes is great, because a lot of people are so scared of, oh, my gosh, what if that happens to my liver? Well, in your case, you did have your liver enzymes go up, but then you were, it wasn’t like, now lifelong, you have a horrible injury to your liver. It’s like, okay, you could, you know, titrate it down, and that solved it.

Ananthi:  16:55  

The great thing about the liver is the cells just constantly regenerate. So, it can heal, it can heal itself. And it’s not — your liver enzymes, as you said, can go up, but it doesn’t mean you’re like permanently damaging your liver in a short time. That’s why we get those blood tests to keep an eye on it. So, we can spot it early and do something about it.

Cheryl:  17:15  

Yeah. Super, super, super helpful. I just recently, my doctor changed practices, and I was able to look, but her new practices affiliate with the old one — anyway, long story short, I can see option my historical data of my liver enzymes and see over the years. They’ve never gotten out of the normal range, but they’ve gone up and down depending on the treatment. So, anyway, yeah, it’s fun to do that if you’re a nerd. ‘Cause I always like the charts and the number. Yeah. What about Paulina?

Paulina:  17:46  

Hello. Okay, so back then, I was on methotrexate, I believe. And then I changed medications twice since then. So, there came a point where I sort of didn’t feel like it was working anymore. For me, it’s not that I was completely in a huge flare, but I kept getting many flares. So, I’d have one of my elbow, and then my knee. And then my ankle would flare up. And they were all sort of simultaneously all at the same time. But then, one would disappear and one would still stay and then the other one would come up and get a little bit stronger. So, clearly, my body was not happy. And it just kept fighting and it just wasn’t really working anymore. So, my doctor recommended that I change into Cimzia. And that was such an incredible drug actually, for me. And I’m so glad to hear, Jenny, that you said that it was a great experience. And it was a great experience for you. Because for me, I think my doctor said that I need to wait like a month or so to feel its effects really kick in. But I don’t know if it’s in placebo effect, or whatever it was. But literally after the second week, I already started feeling better. And I was like, is that even possible? Or I’m just making this up?

Cheryl:  19:09  

No, I’ve heard that before. Some of them can literally be a week. I think doctors don’t want you to get, they don’t want to get your hopes up that you might be, but it can happen. It’s incredible. I’m so glad you had that.

Paulina:  19:24  

Yeah. So, that was a bit of an experience, like, exciting and great to see my body improving and see that I’m feeling a little bit better. And then, I reached a point where I was sort of okay; however, I gained a flare up. To be honest, I don’t even know if it was a flare up. Pain and discomfort in an area of my body that I never got any pain in. And now that I say it out loud, I think that in our panel, I even mentioned that my back — I’ve never had any problems with my spine. They never even mentioned that. I guess I sort of jinxed it because when I started on Cimzia, I started having really bad ‘back pain’. And I’m saying this with like little air quotes because it wasn’t necessarily back pain. It was one specific area of my vertebrae towards like mid upper back. And it was so uncomfortable that there were movements that I couldn’t do with my body as if I had a dislocation, or like a popped out disc, to the point that it was taking my breath away. So, like, the pain was radiating. And I’m showing this because it’s weird to say this out loud, but like, it was at the same level of my ribcage, but on my back. So, when I made specific movements, and as I practice yoga regularly, I’m pretty in tune with also like how my body reacts to different movements and stretches. I couldn’t do a forward fold. Because when I’m forward and my whole upper body’s forward, I couldn’t get up anymore. It stopped my breath so harshly that I had no idea what was happening. 


And I’m going to mention it now. Because at that point, when that started happening, I started looking at your stories, Ali, a lot more with all of your chest situation because I was like, what the hell is going on. It was the first time that I had experienced that sort of pain. And I’ve tried everything. I went for MRIs, I went for X rays, I went to an orthopedic doctor, I went to an osteopath, they all moved around, they all said there could be some muscle inflammation and stiffness. But as I do yoga regularly, my back muscles tend to be — they said, okay, it’s not just me saying that — they said that my back muscles tend to be okay for like supporting my body and my posture. I’m not on a sit-down job. So, I don’t sit at a computer the whole day for that to impact it. So, actually, up until this point, I still have no idea what that was. Nothing was coming up on tests; nobody was able to tell me really what was going on. But I knew something was not right. Because I literally couldn’t get out from a forward fold. I had to squat down to the floor as if I’m like, literally as if my disc just slipped out. But it didn’t. I had to squat down all the way to the floor and very slowly with a few breaths go up. Because I couldn’t breathe. I literally felt that constriction in my lungs and in my chest. So, that was really terrifying. And it started really gently to begin with. And then, to that point that I’m explaining now, it got over a few months, like 6, 7, 8 months, it progressively got worse. So, in the beginning stretches would help me, I would feel okay. I could still feel that there was something there, but I was feeling okay. And then, eventually it got to the point that I wasn’t able to do certain parts of my yoga practice, because I knew, especially teaching, I knew I’m not gonna be able to get up and leave my students hanging because there I am just squatting on the floor. I had to really adapt to the things that I was doing. 

And because it kept getting worse, obviously, I was talking with my rheumatologist during this whole time, seeing different doctors, trying different things like warm and cold, massage, physiotherapy, all sorts of stuff that I possibly could. And different yoga practices with my own therapeutic knowledge. Nothing was really helping to the point of getting rid of it completely, or like really helping me not make changes in my life to adapt to it. So, eventually, we came to the decision to change my medication again, because even though all of my other joints were really happy, that one specific area of my body that never, I had never any problems with, all of a sudden just flared. And they changed to Rinvoq. I spoke to Ali a few times about this medication already. So, there’s a lot of up and down stories about Rinvoq as well. And I have to be honest, I had a really good experience with it. And there’s a reason why I’m saying that. And I’ll get to that in a moment. I had a really good experience with it. So, all of my other joints stayed happy. My back sort of started getting better, but not really fully, so I could still feel that there’s something weird going on. But it wasn’t taking my breath away. I just had to be a little bit more careful with my movement. And yeah, so then it just got better, steadily got better. And then, I got to a point which, Cheryl, you asked us before we even started this recording, I think, if our journey was linear. Sort of, I guess, from that point, I could say like my journey started becoming a little bit more linear because I was feeling fine. Nothing was really happening. 

And the reason why I said had good experience of Rinvoq is because — and I just checked my calendar — on Friday this week, and now we’re on the 22nd of November, on Friday this week, I’m going to be six weeks in remission. Unmedicated remission. And it like literally gives me chills as I think about it. Because I got to such a good point where I said to my doctors, like, you know what, I just want to try. Like, I’ve done it before, my body’s done it before. I just want to try, like, if it doesn’t work, I’ll go back on it. And she said, it’s completely fine with Rinvoq to go back on it if I feel a little flare coming back. And I was like, you know, I just want to try and actually, it’s gonna be six weeks now that I’m great. I’m fine.

Cheryl:  25:38  

Oh, my gosh, that is definitely not a linear story. But so, I know so few people whose stories are linear. But I mean, that is, I’m so glad you’re doing well. And I think it is, like, whenever I hear about these mystery illness, mystery symptoms, like the back, the vertebrae, the chest, it just, it’s like an itch in me that I need — like, it’s like, why, why? Why? You know, it’s so hard to cope with that not knowing why. But clearly the fact that you did better once you started the Rinvoq — was it pretty immediate, or pretty slow?

Paulina:  26:21  

No. It was very gradual. So, I sort of, because the pain in my back was at its peak, I guess I noticed the effects of that going down quite fast, but it was still lingering. And now, I can say that that spot in my back, there’s specific movement that when I do it, it clicks every time now, but it doesn’t hurt anymore. And it’s been a few months since I had that extreme moment of my breath being taken away by pain. And it’s, actually, when I say this out loud, it makes me, I guess, think a little bit weirdly of myself because I would go so long, a few weeks, without doing that movement to not initiate that pain, because I sort of knew what movement creates it. But then, after a few weeks, I’ll get curious and be like, is the pain gone? Let me just try it out. So, I’ll do that move just to see like what’s going on. So, there are times now in the past six weeks that I’ve done it a few times as well, since I’ve been in unmedicated remission, to try it. And I’m okay. Like, it clicks, I can feel sort of like a stretch happening. But it’s not radiating to my ribs or my lungs or the front of my body anymore. So, it was gradual, but sort of not because I could feel the effects of it pretty fast, but it was still sort of lingering there.

Cheryl:  27:45  

Wow. And I think, you know, if you have more than one variable in your life changing at any time, then there’s always this is it this, is it that? Like, did you have an injury? Was it the rheumatoid arthritis? Do you have ankylosing spondylitis, too? Because that tends to affect the vertebrates more and you can have both. Is it, you know, just some random cell in your body went rogue? Is it the medication not working? Or is it stress? I’m always like, is it stress that I didn’t sleep well? Is it is a food? You could go down that rabbit hole forever. And so, it’s always nice when you get some clarity at least, like, okay, it either was destined to go on this trajectory of getting better, or most likely because it was so soon correlated that it was from the medication change. So, phew, that’s exciting to me that you’re doing well now. I’m just glad we’re capturing this moment in time. And I want to check in with Ali, too, before we go into, like, and we’ll have more of like a back-and-forth conversation with the whole group. But Ali, what has been — I know it’s gonna be hard to condense your journey. But whatever you want to say.

Ali:  29:01  

I’m the auntie of arthritis. So, my journey is very long, but I will try to make it short. I’ve been on seven different treatments. So, but just to recap, before 2020 when we did this podcast, even though I’ve been on several different treatments, methotrexate has always been the linear one. I’ve always had it. I’m actually coming up on my eight-year anniversary of being on it. So, it’s been a journey. But so, I actually, just like Jenny, I put it off as well. I was getting my knee drained every week for seven weeks in a row. And for those seven weeks, I was unable to walk so I was using like crutches or a cane, wheelchair assistance at the airports because it was Christmas time. And my doctors were draining, different doctors were draining my knee because I was in denial that I had RA even though I had got diagnosed like six years before that, but so I put it off because of that, you know, that scary low dose of chemo even though it’s not, you know, thing and then all the side effects. So, I kept putting it off, putting it off. And finally, by the seventh straining, my doctor was like, I refuse to drain your knee right now, unless you start methotrexate tonight. And I was like, copy that. I will. Go ahead and drain my knee. I need to do this. It was actually the day I got my cat, Cooper, too. So, it came at a perfect time. 

But I was on methotrexate, and it was doing well up until 2019. So, the year before we did the podcast, my disease skyrocketed. I think it’s called the Vectra test, am I right? Yeah. Yes. And so, it went from, I think, 15 to like 60 something. And yes, and they were like, whoa, this is not great. But I was doing okay, like, my knees weren’t so fantastic, but I thought I was okay. But because of that we started Enbrel injections. So, when we did the podcast in 2020, I was on methotrexate tablets 25 milligrams, because I’ve never been able to go down this whole time. So, I was on 25 milligram tablets and Enbrel injections. And then, at Thanksgiving — wow, exactly that Thanksgiving, right after our podcast, I went to the doctor and I was like, hey, I’m doing great except for I can’t squat and I can’t really sit. And she was like, “Hmm, that’s not great. You have fluid in both knees.” And I’m like, oh, wow. So, we found out I developed antibodies to Enbrel, and then we switched me to Humira, the sister drug. And so, I was still on the tablets, 25 milligrams — and oh, actually, at that time after the podcast, I decided to lower it. This is why I can’t ever lower it. So, I lowered I was like, oh, look at me. I’m lowering methotrexate. I’m gonna do this. I think I went down to 10 milligrams. I was all excited. Until I couldn’t sit, and, and then they were like, we’re going right back up to 25 milligrams. I was like, cool, whatever. Humira was a lot of fun. 

However, just like Paulina with her back, and I definitely talked about this in 2020, but I’ve had chronic chest pain coming up for nine years now. And it’s undiagnosed. I’m trying to get in the process of getting a diagnosis and getting really aggressive about it. But yeah, nine years of chest pain that feels like a heart attack. And for a second, I got my dates wrong, and I thought maybe methotrexate had something to do with it. But I had the chest pain for a full year before I started methotrexate. So, it’s good to know that’s not the case in case anybody’s wondering because a lot of people are like, it might be the methotrexate. It’s not. And so, the Humira wasn’t doing enough. And so, I started the lovely infusion. So, I did infusions. And it was a bio similar to Remicade called Avsola. So, at this time, they thought I had pericarditis, which is quite common in RA patients, it’s fluid around the heart. Just like we get fluid around our joints, you can also get fluid around the heart. So, they thought I might have pericarditis. And so, before the testing, they were like, we’re throwing you into infusions, and we’re going to switch you to methotrexate injections. And I was like, well, great, because I hear it’s a lot better to do the injections than the tablets. However, I got through like seven years of taking 25 milligram tablets, and was fine. I mean, it’s not fine, please, it’s actually not fine. You get the side effects, you know, like, you get nausea, headaches, and the brain fog is crazy. But I was okay. I wasn’t like vomiting or having such bad nausea I couldn’t function. But I started the injections. And that was about a year ago, when I started doing infusions. I have trivial amounts of pericarditis, which is basically nothing. So, it’s not pericarditis, we’re still not sure what it is. 

But after going on infusions, I was like, this isn’t doing anything. So, I am also, I started travelling, like I said in the beginning of this video, I’m travelling right now. And infusions are very difficult to do on the road. I tried. But it’s not easy. So, I actually met with an out of network doctor because I’m in the US. And so, I was like, let me just try this out of network doctor in New York. And she was fabulous. And I told her, I was like, hey, I’ve been on methotrexate for eight years now. And I would love to go off of it just because, like, the brain fog is so severe with me, and I’m a personal trainer. And I would be training group class, and I would forget the word squat. I was like, I just don’t want to live like this anymore. I don’t mind the nausea, the headaches, whatever. It’s just the brain fog is so incredibly bad that I just, I just wanna see if I can go off. I just, I’ve been on 25 for eight years, and when she when she heard that she was like, “I never put patients on 25 milligrams.” And I was like, what? She’s like, “Yeah, I only do 20mg,” and I’m like, you know what, I probably would function just fine on 20mg. So, it was really interesting to like, hear that, of course, I’m sure if her patient’s really bad, she would go up. But I was like, well, that’s nice because one of the doctors I had who I loved was kind of just pushing more drugs on me. So, after the podcast, Enbrel failed. I did Humira, I did Avsola. And then, I started Rinvoq. And gabapentin. Gabapentin is my least favorite drug of all time. That’s a whole other podcast. But the Rinvoq was just not doing anything. And I would forget to take it. So, Paulina, I don’t know how you do it. But I wouldn’t take the pill every morning. I tried, but I was just not doing well. And I never thought I would say that I miss infusions. But I was really not sticking to the pill. 

And anyway, I was like, kind of getting these, like I was breaking out but not with acne. It was like, weird spots on my face. And I got two cold sores in the span of a month. And so, if you’re on cold sores, maybe Rinvoq’s not for you, because I get them. But anyway, my doctor was like, let’s get you off methotrexate, and she didn’t like try to push me back. She was like, okay, let’s do it. And it was the first time that a doctor said that. Usually they’re like, no, you can’t, you can at least lower but you’re not going off of it. And I’m like, so excited. So, I’m starting a 17.5mg this Saturday, which I’m super excited about. I did have fluid in my knees last Sunday for the first time in a long time. And I was starting to get discouraged. But it’s gone. Thank goodness. And because I’m going off the methotrexate, she started me on Orencia, which is an injection. I always get Orencia and Cimzia mixed up because they sound the same. But I started Orencia. And I’ve been on it for two months now. And the only side effect is that makes me jet lagged. But I’m very excited to get off methotrexate, but I’ve only tried to go off once before and it didn’t work. So, just fingers crossed that my knees don’t fill with fluid. And that’s my journey.

Cheryl:  36:04 

Wow. And I think, you know, even Ananthi’s story is a testament to even small changes in the methotrexate dosage can have a big effect. So, maybe, let’s say, for you, you get down to like 12-and-a-half and you’re like, wow, I don’t even notice my brain fog right now and I’m having the positive benefits on my joints. So, first of all, I know that your chest pain has been — I know just from following your stories on social media — like really severe. And so, first of all, I’m just glad that you’ve been able to be here with us today to share your story. And I know we both have had something called costochondritis, which is a little bit of like a, it’s a very, it’s not like a condition that is, how would you say, like definitively diagnosed, it’s just kind of like if they don’t know why else you’re having chest pain. Costochondritis means like inflammation where the rib cage meets the sternum, usually on the right side. And it can be associated with one of these rheumatic diseases or it can just be its own little thing. But I just know, I just, really, I feel for you and anyone who has any chest pain because it is so scary to have the experience and then to be told, “Well, it’s not it’s not your heart,” but then you want to go — you don’t want it to be the one time when you’re like it’s not my heart, you don’t want to actually be your heart. So, it’s better safe than sorry. So, that’s sidenote. 

But, and I’ve had, I’ve been on Orencia. I will just quickly, for the people who might be like, Cheryl’s not telling what she was on. So, 2020, I think, I was still Orencia and methotrexate. I’ve been on methotrexate, and I’m actually on 25 milligrams. I think it’s because I’ve had it now for 20 years. So, I’ve been on methotrexate at various doses for 20, for the whole 20 years, except for pregnancy. But then, I was on Orencia and then that started, I started getting more joint pain, especially the morning stiffness and so switched to Actemra for a couple years, and then switched out to Xeljanz, which is an oral JAK inhibitor. And Paulina mentioned you had acne on Enbrel, I’ve definitely found that each med has its own little proclivity for side effects. Like, I was on, I had more acne on Actemra, and then on Remicade I got sinus infections, on Enbrel I got like fungal infections, so it’s just kind of funny. Each one is different. But so, you know, all of us, you can see these are not, like, these are not boring stories. These are not like, I just did this, and it was better. So, I’m curious, I’ll just throw it out to whoever might want to share, how have you coped with all the ups and downs? Or what have you found helpful in coping with these uncertainties? Someone just asked me in the Rheum to THRIVE support group this morning actually, before this recording, someone said, “How do I plan my life when I don’t know how I’m going to feel in like months or years?” and that’s just such a hard — I know you can’t answer that. But how do you cope with that? Yeah, all of that. How do you cope with life? Help me! No, help the audience. Any pointers? Therapy? Anyone else going to therapy?

Jenny:  39:08   

I think therapy — I think everybody should go to therapy, personally, but it’s just like the best thing ever. But I think a lot of the times in life in general, like, we try so hard to control — like, especially me, I have baseline anxiety. Like, it’s just a struggle. I try to control so much of like, I don’t know, what happens in my life. But we’re really not in that much control to begin with. So, one of the things that when I was having a really hard time in the beginning, I have switched therapists throughout, too, but the first time I met the therapist I have now, I was like early in my pregnancy. I was so nervous, like, just that I was gonna mess something up, you’re not in control, it’s a situation where you can’t really control it, how it goes. So, similar to the arthritis. But she gave me like a toolbox. And I remember, like, it’s so helpful to have this imaginary toolbox. And it’s like, you come up with things that you can do when you’re feeling anxious, because really what it is, is you have to control the feelings of the anxiety of being out of control, at least for me. And so, it’s like, she gave me this cool invisible toolbox that like for each level of anxiety that you have, because, you know, when you’re really like mildly anxious, you can sit down and read a book, it’s not too bad, like, you can focus on something. But then, when you’re in extreme anxiety about something, you really need to like, for me, it’s I need to move, I need to do something. Like, I need to get out of the house, I need to — so we came up with different things that use different levels of anxiety that I could do. I don’t know. And I thought it was the coolest thing because it was like, it seems so obvious. But if you actually sit down and think these things through and have them out, and you could even write it down, then when you’re in that situation, you’re not like, well, what could I do like at this point? It’s like, oh, I already thought this through at a time when I could think type of thing. 

Cheryl:  41:00 

Oh, that’s a beautiful, like, that’s such a helpful idea. I mean, at the pediatric clinic where I used to work at, we would help kids make these — we make them out of these, like, the McDonald’s Happy Meal boxes that you can buy them on Amazon, just a set of, like, 20, you know, takeout containers. And you would, yeah, you would put decorate it and say ‘My Tool Box’ and put all the coping tools in there like affirmation cards, or like squeezed balls.

Jenny:  41:25 

Or like the feeling, like, I know when people sometimes, when you’re really anxious, if you feel different textures that like grounds you back into, because I feel like largely that this is like, we’re being handed cards that we didn’t ask for. We just got this hand. And it’s so unfair. And it’s so just, like, I don’t know, it’s like you can do everything right. And you still end up with these cards that you didn’t want. And you have to play them. And so, but it can be really anxiety provoking, too. Like, well, I know, these aren’t good cards, and a lot of people have better cards than what I’m holding right here, you know. But it’s like dealing with those big feelings is something that I found that is really hard. But that’s where it’s at for me. 

Cheryl:  42:10 

I appreciate your insight about anxiety. So, it took me so long. I tried to convince my therapist that I was really good at controlling things so it wasn’t a problem. You can imagine how much fun they had tried to explain, like, “No, but I’m good at control.” And they’re like, yeah, control works for things that are controllable. Not everything in your life is controllable. But I’m like, but what if I try really hard?

Jenny:  42:33 

That’s something to speak to, like, if you’re an overachiever, to be like, well, if I just do, if I do what I have always done and just try to overachieve at this, too, I’ll do it.

Cheryl:  42:42 

It is really a mindset like — it’s again, not to say that you throw your hands up to the Universe and just say, “Oh, well, nothing, I can’t control anything.” It’s like finding that balance. 

Jenny:  42:54 

What you can control, you know, finding what in that, like, there’s this larger picture that you can’t control. But what in it, can you?  

Cheryl:  43:01 

Yeah, exactly. And I think there’s an analogy with parenting for that. I learned these things for my chronic illness. I didn’t start therapy. So, when my son was one-years-old, and I went to therapy, I thought I was going there for postpartum anxiety and postpartum just feeling like not myself, you know. But I was like, first of all, I always think it’s funny with the like, are you feeling loss of pleasure in things that were previously pleasurable? I’m like, I don’t know, I didn’t have a child a year ago. So, I can’t, like, I can’t, this is not a comparison. My life before was completely different than after having a baby. I don’t know if I would have found it pleasurable under some other circumstance. Like, it doesn’t make — anyway.

Jenny:  43:37 

So, arthritis, too. Like, I didn’t have this before. So, did I lose pleasure in things? Or can I just not do anything? Like, I feel like I got everything taken away, you know? Yeah. 

Cheryl:  43:47 

Ali, did you wanna — or you’re just shoving out of your creche — yes. Yeah, I felt now that I’m 42, it’s also like, is it ageing? Like, that’s on the list now. Am I just getting older? Like, I can’t compare my life at 42 to my life at 20 pre-diagnosis, like, I’m not gonna — that’s not the baseline I’m going to return to ever, because I’m not 20, you know, so I don’t know what a 42 year old feels like who doesn’t have rheumatoid arthritis. Ali, did you want to add to what Jenny was saying about that?

Ali:  44:15 

No, I was just — that made me laugh. She’s like, we didn’t know what this would be like after we get it, you know, like, if it — yeah, it makes me laugh, too. Like, I don’t think we can do the things that, you know, bring us pleasure, you know, like working out and going on hikes like that. No, that’s what I was just laughing at that. But I can second therapy. I just actually started it for the first time and it’s been like, I think it’s been a month. And so, I thought, I usually — I thought I could deal with having a chronic illness and not going to therapy. But it’s like, no ma’am. This is so incredibly hard, especially with the chest pain, like, I actually had to like — I quit my job to move. But I thought about it and there’s no way I could work at a gym anymore because the pain has gotten so bad. And especially if you’re trying to get a diagnosis or the medications not working, and you’re just in pain every day, get a therapist. Just get a therapist. It’s great. So, working with her, like something I’m doing is — because a lot of us and I’m sure people listening can relate — is that we’re just so negative all day just because you’re in pain. And it’s extremely hard to be, just to exist when you’re in pain all the time. And so, like when I got with my therapist, I was like, I just need to learn how to be in pain every day, all day long. Like, I just don’t know how to do this. But one thing I’m working on this week, and I think it’s fun, is that taking, like taking 10- to 15-minutes to really feel those feelings. Like, feel sorry for yourself, be pissed off, like get angry, like because we’re on Instagram and we see a lot of just positivity and stuff. But just take time to feel those feelings. And, like, punch a soft pillow. She was like make sure it’s soft. And get all of it out. But so, I’ve been doing it and it feels really good. And it also feels really good to talk to you guys. Because you guys get it and all the listeners get it. So, but yeah, therapy, please, please, please. And if I think of something else, I’ll let you guys know.

Cheryl:  46:01  

Well, I think, you know, touching on therapy and social connectedness, like, so I know all of us met on social media. And there’s this feeling, I think, one thing that almost unites everyone I’ve ever met with a chronic illness is that at some level, we feel like everyone else has it figured out and we don’t, even if all day long my scroll through, when I see other people, at some point I will feel alone in my journey. So, the antidote is to actually not just kind of passively watch other people’s experiences, but also actually get to know people truly, like we’ve been able to do. So, anyway, preaching to the choir here. But Ananthi, what would you add to this discussion? 

Ananthi:  46:42 

Yeah, I wanted to add in, actually, the four of you plus Kristen, who was on the original panel, all of you played a massive part in me coming to accept my diagnosis. And it was meeting you guys honestly, that that saw me through it. Because, like, you have your friends, you have your family, they’re great people, they have your back for everything. But they don’t truly understand what you’re going through. Like, it’s hard to explain being in pain every day, until you’re in pain every day and you feel it yourself. But yeah, it was, yeah, definitely you guys, you helped so much, because I actually started my social media for selfish reasons, in order to find people like you, but I couldn’t imagine finding what I found, right. So, yeah, it’s, it’s, it’s been unreal. And I’m very grateful for the people I’ve met along the way because everyone’s journeys, like, just listening to you guys, you’ve all been through so much, and you’re still going through so much, but all of you are smiling, you’re positive, you’re living a life, you’re doing so well. And it’s so inspirational, honestly.

Cheryl:  48:01 

Yeah. Thank you, thank you for sharing that also in shouting out Kristen Brogan who she’s not very active on social media currently, I think she made that conscious choice for her own, you know, anxiety and quality of life issues, but — not issues but her own decision that was right for her quality of life. Also, I wanted to give a shout out to Aashi who had the idea initially to bring this group together. So, I did, because I was the only one that had a podcast. I was like, at the time I was like, okay, well, can I just put this out on a podcast as well as YouTube? Because I noticed how many people — this is my number one video on YouTube, the 2020 Methotrexate Panel. And it’s because of, you know, there’s something so powerful about people sharing, sharing their truth, sharing their stories. And so, Ananthi, thank you for sharing that. And I think it really, yeah, there’s so many things that are just beautiful about that. Paulina, did you want to add?

Paulina:  48:52 

Yeah, just a little side note before I go on to what I wanted to say, I still have people messaging me after watching that YouTube video or listening to that podcast episode. And it’s so incredibly heartwarming to know that there’s something out there for people, that it’s not like we’re just giving them information and sharing our life, but they feel so comfortable to reach out to us. And it’s like, I mean, yeah, we are humans. And our messages are open to everybody. And we just want to talk and share. And Anathi, thank you for everything you just said because that just made me literally melt into my seat with like warmth and love and that just felt really nice. So, yeah, I think when we, just going back to your initial thing of how I cope with this change and uncertainty, everything that has already been said, I would say that again. And maybe double it again. Therapy is, like, it’s such a huge one. I’ve been in therapy for a few years. I’ve just started a new therapy actually. So, I went from talking therapy, which helped me a lot in finding my toolbox, and recognizing my need, and learning how to feel my feelings, to now going into somatic therapy, which actually works from the body first. So, it’s tuning into the sensations in the body, and then working my way up from them. Because I feel like we have the talking therapy in my toolkit, and my mindset, and my mental health in general, it’s sort of at a really good place. And I know how to help myself. But I know that the body holds on to so much, and it’s nice to have a different sort of therapy now. So, a little side note on that. 

And I don’t know why I feel the need to share this, but I’m going to anyway. When it comes to dealing with change, and you use the example of like planning for the future, or even planning for tomorrow, or planning for next week, I think one of the biggest things that helped me accept that and be okay with that I can still plan and be okay with the fact that the plan might change is sort of not giving a crap about other people as much. And like recognizing that if I have to cancel plans, it’s coming from a place of love. And it’s not that I don’t want to see you, or it’s not that I don’t want to do that. So, I know that if I cancel my plans, and that person is meant to be in my life, they’re going to accept that. And they’re going to be okay with that, because they’re going to understand why maybe the plan has changed, the plans are changing. So, that’s more like relating to other people and plans, which have happened so much in the past for me. And it’s a really difficult thing to go through, to let go of certain people that clearly were not meant to be there and it’s such a hard process, but feels so much lighter afterwards. Because now, I’ve got people in my life that even if I feel great physically, which I do, or I have for a little while now, sometimes mentally, I’m not up for it. And mentally I recognize, actually, I just need to stay at home alone in silence and just be with myself. And I have people in my life now that I just tell them like, look, I want to see you. I love spending time with you. But equally, right now, I just need to be by myself. So, it’s really nice to go through that really hard part of maybe letting go of certain people in your life to then find the crew, find the people in your life who are going to accept that. And who are going to make it so easy to look after yourself. For me to look after my body, for me to look after my mind, my life, and feel okay with it. They’re going to be supportive of that just by simply accepting and trusting, knowing that there’s no hidden agenda when I cancel or change plans.

Cheryl:  52:56 

That’s beautiful. 

Paulina:  52:57 

Yeah, so that’s like one little thing about, I mean, it’s easier said than done, right? Not give a crap. But that’s sort of like the baseline of it. And when it comes to making plans for myself and my future, when it maybe doesn’t relate to other people, I think I practice and learn to be really present. And this is like such an overused phrase, such a trendy phrase, is being the present moment. Let’s be mindful. Like, I know, and I get that. But there’s a reason why a lot of people keep screaming it, because it just brings so much nice feelings. It gets rid of that, like, uncertainty and not accepting the change. So, even though I might have goals and plans for the future, I’m also so present and actually loving this moment and what it’s bringing, and sort of trusting that it’s going in the direction that it needs to go into. And knowing that, okay, I’ve handled so much in the past already, that whatever I’m going to be handling in the future, even if it’s not how I wish for it to be right now, I’m going to manage it. And it’s gonna work out and I’m gonna learn how to work through it. So, maybe, yeah, not give a crap and sort of learn to being in the present moment. Let me repeat that phrase again.

Cheryl:  54:23 

No, it’s such — I really relate to that. For me, one of the things my therapist pointed out to me is that I am like a good problem solver. So, like in the present moment, I spend a lot of time trying to make future Cheryl feel better and feel happier. But if your entire life is always about the future, it will never live in the present, you know. And I mean, I know it’s so it’s so sounds so obvious when you say it. But when you’re in pain, the last thing you want to do intuitively is to live in the present. And so, you said somatic therapy. I remember the first time my therapist tried to get me to do that. I was like, she’s like, “Where’s your pain?” I was like, it’s in my brain, because it’s like, I had so intellectualized that, like, I understand that all pain is processed in the brain. And so, she’s like, “Okay, but where are you feeling it?” I was like, my brain. Like, I couldn’t even, like, because I had so dissociated from my body that like I couldn’t even identify with, okay, well, yeah, the bottom of my foot hurts. My hands are, obviously. But like, oh, wait a minute. Yeah, like, can I like — I was like, what’s the point of feeling your pain? But it is, it’s like, ‘That which you hold holds you’, like that, the more that you think that I can’t, I can’t think about this, I can’t attend to this and be present with this because it’s too scary, then that is like holding you hostage. Anyway. So, it’s easier said than done when it comes — it’s easier to to explore somatic therapy, when you’re in more mild to moderate pain. I do think like severe pain, it would be pretty, pretty hard. That’s like advanced levels.

Ali:  55:59 

And also, yeah, so with like, severe pain, because that’s what I’m feeling. So, I’ve been talking with my therapist a lot about it about like, what happens in the moment when you’re having severe pain. So, usually you get anxiety because you’re like, I’m gonna die, if you have chest pain, especially. And so, then, usually after the shock of like, oh, my God, this is so painful. Usually, your anxiety starts to, like, because we’re so anxious about control and like the future. So, then for me, and I’m sure a lot of spoonies, like, your brain spirals to, oh, my God, I’m gonna have to deal with this every single day of my life. Like, this is awful. Like, this pain is so real. And it’s consuming me and taking over my life. And my therapist said something, and I hope this helps you guys, but I kind of like it. My therapist was like, “You have no evidence that the doctors are not going to figure this out.” Like, you have no evidence that they’re not going to find a way to help you. Or you have no evidence that you are going to feel like this in five years, or even next year. Like, you might be thriving next year. Because you don’t know. Like, you don’t know. Just how bizarre out mind thinks like that. You know, like, I’m like, I’m gonna be like this for the rest of my life. There’s no way, because been nine years now. So, I like that. And so, I’m latching on to that. Every time I’m like panicking about the future, and the amount of pain I’m in, and especially for chronic illness warriors who are trying to find that right medication. And like, listen, I’ve been on seven of them. And I still don’t have it together. So, you have to like hold on to that. So, always think that there — it’s like the little angel telling you like, “You have no proof of this. Don’t spiral because you have no proof. You could be better next year, just keep fighting.” So, I thought that was really cute. I liked it. 

Cheryl:  57:32 

That’s beautiful. Because it’s logically, it is true. Like, on the one hand, yes, past performance predicts future, but not always with chronic illness. We could — I talk to these — if you didn’t hear this episode, because I don’t blame anyone for not catching every single episode, I talked to two researchers from one of the most prestigious research institutions, the Benaroya Research Institute in Seattle. They think that there’s going to be a cure for rheumatoid arthritis in my lifetime. I asked him that. And I’m like, I’m 42. Like, I was thinking they’re gonna say ‘No’, because scientists are always hedging. Like, they’re always like, well, maybe, maybe no. They’re like, no, we’re close. We’re getting closer. Like, we’re pretty close. Like, oh, my God, you know. So, we don’t know what’s going to happen in the future. And you could cure your rheumatoid arthritis and then get some other horrible thing. You know, you just don’t know. So, if you spent all your time assuming your future — anyway, I still resonate with that. Good therapist. Good therapist. And good you for listening. And because, I think, for me, my therapist said a lot of smart things. I didn’t always listen initially. So, that’s step two. Step one is to get therapy, step two is — I’m like, no. But like, I sent — I have a different, I’ve had two therapists. I sent, the male one, I sent him the meme other day of like, from The Big Lebowski where it’s like, “That’s just your opinion, man.” I’m like, that’s what I feel when you’ve explained something I don’t want to hear. But anyway, oh, my gosh, time has just gone by so fast. I so appreciate all of your time. I know we should just keep doing these check ins. But if you have time, I would love to also just end on one of my favorite questions to ask anyone when we when I get them on in my captive audience here on Zoom, is do you have any words of wisdom or affirmations or just advice you like to give if someone’s listening, imagine someone listening right now, they’re just fresh, newly diagnosed. Do you have any, like, I’ll give you a second to think about it. I have a poster up of my desk that says ‘We can do hard things’. That’s one of my most important mantras. And acceptance is not a bad word, is what I would like to tell them. Just plant the seed in the very beginning, that this is not something to fight or conquer, that you can learn to live alongside this and accept, like, this is your new life and you can still have like a beautiful life with chronic illness. But that’s just me. Well, Jenny, you want to go to there?

Jenny:  1:00:02 

I think I have — because when I was diagnosed, like, the biggest obstacle for me was the grief. Like, the grief of the loss of my old normal and not yet finding a new normal and just kind of existing in this middle space. And I always thought that, like, if I was grieving, then I couldn’t also experience happiness, or I couldn’t also experience anything else. It was like mutually exclusive. It’s like, I could have this or I could have this. But something that this has really like taught me is that grief and joy, and grief and gratitude, like, polar opposite sort of feeling things, can exist in the same heart, and it can exist in the same space. And so, I’m learning to hold both. And it’s possible to hold both. And you don’t have to be one or the other. Because then I feel like it puts this pressure on you to either be I’m either grieving or I’m happy about this one thing, I can’t be both of the things. And that’s really how I felt in the beginning. And the grief hasn’t really gone away. For me, it just kind of has changed in the time. And so, it’s not an end goal that you’re trying to get to, it’s learning to hold it. And kind of like you said with like thee negative, like with pain, or with a negative emotion, the more you stuff it down, the more you try to feel like I shouldn’t feel this, I shouldn’t, like, the shouldn’t thing. Like, if you ‘I shouldn’t, this is bad, this isn’t good’, it gets louder, and it takes up more space. And it just like consumes you more. And so, if you actually, like, my therapist made up a thing, and it’s like, yeah, your anxiety or your grief might come around again this time, like, whenever if you’re going through a hard thing, but instead of boarding up the windows and locking all the doors, I think that this time, you could make the bed, the guest bedroom, and let it stay for a little while. And yeah, and I really liked that. It was like, okay, we can be friends and I don’t have to shut you out. Yeah.

Cheryl:  1:01:50 

That is so profound. I’m going to put — it really resonates exactly what the one of the talks I went to at the American College of Rheumatology conference last weekend by a social worker, an occupational therapist, who has rheumatoid arthritis. And they talked about how Elisabeth Kubler Ross, who coined this Stages of Grief never meant stages of grief to be linear, and never meant them to be something that you’re just done with at some point. Like, they made this huge case, just like you’re talking about, like grief is something that you’re going to experience throughout your chronic illness. And yeah, so, so true.

Jenny:  1:02:27 

And it’s possible to grieve, to not be done grieving one thing, before you get another thing to grieve. Like, it’s not like you can only have one thing at a time. So, yeah.

Cheryl:  1:02:36 

I really, I totally — I totally appreciate your perspective on, like, that you can feel joy alongside grief, or gratitude alongside grief. And that’s huge. You can maybe, you know, it reminds me of how, because I’ve seen so many people come through the support groups that I’ve run for Rheum to THRIVE that are newly diagnosed. And it all depends on the context. The people who, like me, were desperate for an answer as to why they were in pain and feeling horrible are relieved and happy to get their diagnosis. And then, there’s the people who their life was going along fine. And then, they just had this one little joint that hurt. And all of a sudden they have the diagnosis. And they’re like, wait, this is horrible. So, it’s like nothing is good or bad. But thinking makes it so, you know, from Shakespeare. So, anyway, but that’s — sorry, I’m off. I’m off. This is my liberal arts education. This, like, gets me and my brain going in too many directions. Does anyone else want to share your words of wisdom? Paulina?

Paulina:  1:03:36 

So, I guess this could be similar to Jenny’s. But I somehow thought about it slightly differently, but I relate to it. I don’t think there’s anything anyone of us would say that I would disagree with. This is just very impossible. But what came to me is, I remember at the time of our last panel, I was very active on social media in relation to rheumatoid arthritis. And I’m not anymore. And there is a reason for that. I shared it with a few of you. And I think this is something that I want to leave the listeners with, especially if you’re newly diagnosed, and maybe even not when you’re newly diagnosed, but for anybody really listening. The reason why I stopped sharing so much on social media about rheumatoid arthritis is that one, I think I said that also in our last panel, is that it’s not me, it’s not just my personality. Arthritis is part of my life and part of my physical experience. But it’s not me. And it started feeling that way, that all I was talking about, doing, preparing, listening, seeing was just rheumatoid arthritis or arthritis. And it’s great because we’ve noticed just with this discussion how important this community feeling is and it’s an important part of it. But maybe in safe dosages, excuse the pun. Yeah, but it just in safe dosages of community as well, to not forget that there is a whole life out there for us as well. 

And the second reason why I stopped, which I guess can be transformed into a little advice tip support is that it’s okay to have other things going on in your life. I struggled to accept that so much when I started not sharing so much on social media. I felt so much guilt that I’m letting down the community, that I’m not sharing every day the pain that I’m having, or the way that I’ve coped with my pain, or the tools and the strategies that I’ve implemented. I felt so much guilt for it. And it took me a little while to come to a place of like, actually, it’s okay, because I’m still gonna show up on my Instagram or social media, and share about it when it comes up for me, because my social media is about me and my life. So, a lot of that gets shared on there. But it’s not just the only thing and it’s okay for me to share other things that are going on for me, that it’s okay for me to actually even experience other things in life than only or just arthritis related. So, if you’re listening to this, and you’re hearing that, just take community and take listening to these videos with, like, a safe, safe way, to not — yeah, Jenny just said in the comment, and it’s definitely possible to get consumed by it. Yeah, to not get completely consumed by it and not forget to live, enjoy. And be okay with celebrating that and feeling that joy as well. So, yeah, that’s it for me.

Cheryl:  1:06:52 

What you’re saying really reminded me of a pattern I’ve seen for some people that their whole life becomes about controlling their symptoms, whether that’s through a lifestyle intervention, like nutrition, or exercise, or meditation, or yoga, or whatever it is. And you forget that what — I did this little video the other day, that was like just miscellaneous, you know, how having a platform gives you the chance to go on your soapbox. I was like, the point of symptom control isn’t controlling symptoms. It’s enabling you to have a life that you love, that you like, that has a quality of life that’s good for you. So, like, for me, it’s about the tradeoffs. Like, I can eat chocolate, and maybe that’s making my arthritis worse. Oh, well, I’d rather just eat chocolate, do you know what I mean? It’s a silly example. But there is a toxic kind of impulse in some committees. And I know this isn’t exactly what you’re saying. It just reminded me of it. Where it’s like, they’ll say stuff like ‘You deserve’ or ‘You owe it to yourself to do everything you can to control your disease’. And I really disagree with that, like, your life is not all about controlling your disease or having perfect health. It’s about it being, you know, being present, back to the present. And all of us are living a life despite chronic illness that by standards of like humans, like 800 years ago, would be like, we’re freaking queens. Like, the fact that we have all this food we can choose from and all this medical care that we don’t die when we’re 25. Amazing. Okay, sorry. Jenny, what were you going to say? I’m just going off again.

Jenny:  1:08:23 

Oh, sorry. I was just thinking, too, like, when I did get, like, if I — it’s kind of like social media in general. If you take too much in it can just overwhelm you a little bit. But I know for me, like, I started getting anxious about things. I would see people post and I’m a sponge with anxiety. So, I’d see people posting things that they were anxious about with being on biologics, and I had not had that experience. And I started like taking it in and then being like, oh, my gosh, like, well, I’m not worried about this. Should I be worried about this? Am I not worrying enough? Should I be worrying more? I feel like I’m like, you know, so it is possible to fall into that kind of like, I would say borderline toxic space, and it exists for sure. And I’ve showed up differently on social media as well. Like, I kind of step back when I need to. And I used to say sorry for it and be like, oh, my gosh, sorry, I haven’t been on very much. But it’s like everybody here knows you do what you have to — we’re all in the same boat, you know, you show up when you can.

Cheryl:  1:09:17 

Exactly, exactly. My mom used to say in middle school. And this really stuck with me, although it’s still hard to remember sometimes, like, you wouldn’t worry what other people are thinking about you as much if you knew how little they are. Like, they’re not always thinking — we’re all thinking about each other, you know, or we’re thinking about ourselves. Yeah, ourselves. That’s what I meant. Yes. I’m thinking about myself. And yeah, and I feel the same. I totally feel this pressure or pressure if I don’t answer everyone’s messages and stuff. And it’s, yeah, it’s a lot. Ananthi, what would you add to this?

Ananthi:  1:09:51 

Okay. So, first, with Jenny about the grief. I saw this really cool thing the other day. It was about grief. And it’s that the grief itself doesn’t — it’s a certain size. It stays that same size. You grow around it. It doesn’t, the grief doesn’t get any smaller. You grow around the grief. And I relate to that. Whether that’s, like, you’ve lost a loved one or you’re grieving a past version of yourself. Yeah, I just thought I’d add that in. Regarding making choices about life, you mentioned chocolate. I still love my chocolate. I will still, I will go on the night out or I’ll go to a gig and yes, okay. I have to recover for a couple of days. But do I regret it? No, because I had a great time at the time. So, I just, I factor that in. So, previously, if I was away for a weekend, my pre-RA self, if I’d go away for a weekend, I’d be straight into work on a Monday and be back. But now I know I’ll be — the fatigue will kick in, I’ll probably be in more pain. So, I take a couple of days off. I’ll just plan that in, that extra thing. So, with like the words of advice in general, I’m very much a — I’m joining the cliched world, Paulina. Preach the ‘One day at a time’, very much one day at a time, and making the most — and doing the best for that day. So, if, when you wake up, you can like travel a couple of countries, walk around, do everything, great. But if on a day, your best is you can only move from the bed to your sofa. That’s fine, too. That’s, you’re still doing the best that you can for that day. And there’s nothing wrong with that.

Cheryl:  1:11:46 

That’s beautiful. That’s so beautiful. Oh, my gosh. We are so full of advice. This is great. Is there anyone else who wants to say anything else before we wrap up? Ali? 

Ali:  1:11:59 

Well, Ananthi, I didn’t thank you for saying those kind words about all of us and like using, like, meeting others to get through it. So, I just want to second that, like, find a community whether it’s 1 person or 10 or 1000. Like, find your person to vent to because, like I said, you just need to talk shit about yourself sometimes, listen, so find your person to vent to, and they get it, like somebody who’s on the same medication as you, someone with the same illness as you. And secondly, to spoil the shit out of yourselves, baby, because you deserve it. Okay, a lot of us don’t spoil ourselves. But go through so much hell and pain that we absolutely deserve it. So, on those hard days, maybe go get yourself a coffee or get yourself something online like a heated blanket or something, get very bougie with it, okay. So, I just want to leave you guys with that. Please, please spoil yourself and be so damn proud of yourself. Like, Ananthi saying like going to lay on the couch? Be damn proud that you’re laying on that couch, okay. You get up, you go wash the dishes, be damn proud of yourself because it’s harder for us to do things. So, I just wanted to leave you with that. Be proud, find your community, and spoil the shit out of yourself. I love you guys.

Cheryl:  1:13:06 

Oh, my gosh. I need that — well, that’s being recorded, thankfully. So, I was gonna say I need to record that. I need to turn that into like a ringtone, like, spoil the shit out of yourself. Or like my reminders on my phone because I always set medication reminders. I love it. I love it. No, I really, I lived the first, like, you know, 15 years of my condition really without having a lot of community. I didn’t really connect, I didn’t know about all these amazing, you know, online resources, maybe the first 10 years. I started discovering, like the Facebook groups, but I was kind of turned off by them, you know, in the mid 2010s. And then I really think the pandemic accelerated a lot of people’s, like, finding community, finding their groups on social media. So, anyway, point being I’m just reflecting myself as being like, I’m like the grandma of the group in terms of having it for the longest. But realizing that, you know, that this is such a crucial thing in my journey, has been having, you know, having others, too, who understand it and get it. So, for anyone listening, you know, you will find your group. It may take some trial and error, you know. There are certainly groups that have different vibes about them. But so, try. If you don’t, it’s like therapy, they always say, you know, you interview a couple of different therapists and find a good fit. Same with groups, whether it’s a Facebook group or a Tik Tok account, you know, there’s this, it’s exciting that it’s so easy nowadays to find others who get it. So, I just really, really appreciate you all for taking the time, again, to check in. I know some of you, we checked it back in 2020. And then, a few we checked in again in the end of 2021. So, it’s nice to have this little — we’re building a little time capsule of our chronic illness journey. So, I will put everyone’s social media handles, who wants to share them, in the in the show notes. But we’ll just say bye-bye for now, and thank you again!

Jenny:  1:15:01 

Thank you so much

Ali and Paulina:  1:15:04 

Thanks. Thank you, love you guys.

Ananthi:  1:15:06 

Thank you.

Jenny:  1:15:09 

Bye!

2 comments

  • I can’t even begin to tell you how much I needed to hear this entire episode right now. I feel like I’ve had the kick in my pants that I desperately needed to pick myself back up and move again. Thank you.

    • Thank you SO much for taking the time to reach out and let us know this episode was helpful! Sending lots of support your way!