Episode 45 of the Arthritis Life Podcast is live!

Are you curious what it’s really like to take methotrexate for a rheumatic disease? A panel of eight patients (all of whom have rheumatoid or psoriatic arthritis) share their stories with methotrexate. They have had their diagnosis for anywhere from a few months to 17 years and represent different experiences with the medication. 

In this episode, they share their personal experiences and also their best tips and words of wisdom for newly diagnosed patients. This was originally recorded in July 2020. You may also be interested in episode 58, which includes an update from Jo, Paulina & Ananthi from fall 2021.

Episode at a glance

• Introduction to Episode with Methotrexate facts (0:00-5:00)
• Patient introductions (5:00-10:00)
• Patient stories about being on methotrexate: Paulina, Cheryl, Ali & Ananthi (10:00 – 41:00)
• Discussion about natural methods versus medications and decision making around that (41:00 – 47:40)
• More patient stories about being on methotrexate: Jo, Aashi, Kristen, Jenny  (47:40 – 1:09:00)
• Patients share tips on injecting methotrexate or other rheumatic disease medications (1:09:00 – 1:31:00)
• Tips for coping with “miracle cures,”  unsolicited advice & medication shamers (1:31:00 – 

Speaker Handles:

• Aashi Bhimani @adoseofdisability on Instagram
• Cheryl Crow @Arthritis_Life_Cheryl on Instagram
• Ananthi Ramachandran @ar_versus_ra on Instagram
• Ali Digiacomo @anotherdaywithRA on Instagram
• Kristen Brogan @warriorsmovemountains on Instagram
• Jo Mistreanu @thejosphere on Instagram
• Jenny Parker @cute_n_chronic on Instagram
• Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. She’s passionate about helping others with rheumatoid arthritis live a full life, by using effective tools to manage 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 she say) FUN patient education and self-management resources.

Episode Sponsors

Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in October 2022!

Rheumatoid Arthritis Roadmap

This is a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Episode links:

• Resources to learn more about Methotrexate:
  • Rheumatoid Arthritis “In the Clinic” – Annals of Internal Medicine Article (2019) 
    • ““In most patients, RA is a chronic, progressive disease character-ized by episodes of disease flares or long-term chronic inflamma-tion. Only a few patients achieve long-term remission without the need for long-term medications.”
    •  “About half of all patients treated with methotrexate have little or no radiographic progression, although 30% will require addi-al DMARDs (like biologics):
  • Global Healthy living Foundation research into how prominent methotrexate side effects are 
  • Methotrexate Side Effect Stats from the Arthritis Foundation
• Cheryl’s Arthritis Life social media pages:
• Arthritis Life Podcast, Practical Tips and Positive, Realistic Support – Facebook group 

• Cheryl &  Arthritis Life on Instagram
• Cheryl’s website: Arthritis Life
• Arthritis Life Tiktok: @ArthritisLife 
• Arthritis Life Facebook Page
• Cheryl’s Twitter: @realcc 
• Arthritis Life Youtube channel
• Arthritis Life Program Links
  • Join Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. 
  • Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.

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 transcript

[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. 

0:50 – Hi, everyone. I wanted to give you a couple quick background pieces of information before starting this episode. So this isn’t a conversation between eight patients, including myself, that my friend Aashi, um, organized way back in July, 2020.

And the reason we wanted to have a discussion about methotrexate specifically is, it’s one of the most commonly prescribed medications for rheumatoid arthritis and psoriatic arthritis. And it’s one of the ones that people tend to be the most scared of. I mean, that could partly be that it’s usually just when the beginning stages when they’re just getting used to being a chronic illness patient, but it’s also because there are some side effects that some people have on it.

So this conversation, again, it was almost a year ago at the time of this podcast. So, um, we’re all actually going to be doing a part two as well, an update because some of the people had just recently been diagnosed and already have learned so much and things have changed over the last year for them.

So that’s announcement one that this conversation happened a year ago and that there’s going to be a follow-up. And I also really think it’s important before sharing these personal stories to just give you some basic information about methotrexate, to kind of anchor this conversation in the latest science. 

So methotrexate is considered like the gold standard treatment for rheumatoid arthritis. It’s one of the first medications that’s often given to patients and about half of everyone treated with methotrexate has little to no radiographic progression. According to the 2019 article from the Annals of Internal Medicine called “Rheumatoid Arthritis in the Clinic.” And it’s, um, it says that, um, 30% of patients treated with methotrexate will require additional disease modifying anti-rheumatic drugs, just like the biologics. 

And, you know, the, the reason that medications in general are important for rheumatoid arthritis is that according to this article from 2019, which I will link to in the show notes, um, it quote for “most patients RA is a chronic progressive disease characterized by episodes of disease flares, or long-term chronic inflammation.

Only a few patients achieve long-term remission without the need for long-term medications” end quote. So it’s really important to understand that you might see examples of people who are doing really great, not on medication, but that is not the norm. It doesn’t mean that if that’s a goal that you have, you might not be able to work towards it, but the vast majority of evidence shows how effective these medications are and you can’t turn the clock back on permanent joint damage. Um, so that’s just something really important to consider. 

Now, again, I do, I don’t want to downplay the risk of side effects, I personally, as you’ll see in this video, don’t have a lot of side effects from methotrexate, but according to, um, uh, the Arthritis Foundation, which I’m linking to this in the comments, you know, um, 20 to 65% of people who take methotrexate experienced side effects and the Creaky Joints, sponsored, Global Healthy Living Foundation sponsored a study in 2019 that showed that, um, 58% of the patients in their study of over 300 patients had side effects from methotrexate and nausea and fatigue were the most common ones.

So, um, so, you know, it’s an, I don’t want to minimize again, the risk of side effects, but it also needs to be balanced by the potential benefits of this medication in slowing down disease progression. So, um, that’s my little spiel before the episode and I hope you enjoy.

Oh, one more thing I forgot to say is that if you’re listening to this before September 30th, 2021 registration is open for Rheum to THRIVE, my online empowerment and patient support program, where we meet every week and we discuss what’s going on in our lives. And I also give little mini presentations, every single meeting where we talk about all the different ways we can manage our condition, you know, um, in our mental outlook, stress management, as well as tools for pain and fatigue and ways to manage the quote unquote job of being a chronic illness, patient, things like symptom tracking and making difficult medical decisions.

So I love this program. It’s been really life-changing for the people who have gone through it so far. And if you have any questions, just let me know, but it’s not going to open up again till 2022. So if you were interested, join now.

5:00 Aashi:   So, I’ll just go ahead and introduce myself. So, basically, I got diagnosed last year in 2019. And I started Methotrexate after Sulfasalazine was not helping me at all. I started out with pills, and then I ended up needing some injections because the pills were giving me a lot of side effects. So, that’s kind of what my journey has been. I got off of it two months ago, because I needed a live vaccination for chickenpox. And that’s two doses and they have to all be a month apart. So, I’m getting back on it again on the 15th and I’m very nervous and scared. So, I’m hoping that this will also help me be more brave when we restart. Cheryl, did you want to go ahead and introduce yourself next? 

6:00 Cheryl: Yeah. Hi, everybody. My name is Cheryl Crow. I’ve had rheumatoid arthritis for 17 or 18 years, depending on the math, I can’t remember. And I live in the Seattle area and I’ve been on Methotrexate for the whole 17 years, except for when I was planning on getting pregnant and then for a couple years after we weren’t sure if we were going to try for another baby. So, Methotrexate is one of those meds that you don’t want to take when you’re pregnant. So, but I’m excited to share my journey with everybody. 

Paulina:   I’ll happily go next. 

Cheryl: Hi, Paulina.

06:34 Paulina:   Hey, guys, girls. Um, so, I would just say that my name is Paulina, because no one here knows. I’m 23 and I was diagnosed with arthritis at the age of 18, so I have had it for four or five years max. It’s very great right now. And, and I started off with — I don’t know if I should say this now, but I will anyway. I started off with the pills. And now I’m on the injections.

07:03 Kristen:   Hi, I’m Kristen. I am 33. I was diagnosed with rheumatoid arthritis and Sjögren’s syndrome two years ago, and I started on Methotrexate oral form two days after I was diagnosed, and I’ve been on it ever since. And I’m still in the oral format.

Aashi:   Wow, that’s a really quick turnaround for them to give you medications.

08:02 Kristen:   Yeah, my rheumatologist moves incredibly fast, which is one of the reasons why I love her so much. I think that I’ve saved a lot of permanent joint damage because of her. 

Aashi:   Yay, thank you for sharing. Jo, would you like to go next?

08:18 Jo:          Sure. So, hi, I’m Jo. I’m a master student in Leeds in the UK. I’m 22 and I was diagnosed when I was 19 but I didn’t go on the Methotrexate until I was 20. But I will go into that a bit later on. And my fun fact is that in my free time, I like to veganize everything that I used to love before I went plant-based, just do it my own way. So, yeah.

Aashi:   I love that, yay. Thank you for sharing.

08:57 Ananthi:  Hi, I’m Ananthi. I am 34 and I am in a small market town, not far from London in the UK. And I was diagnosed officially two weeks ago and was started on Methotrexate on the day. So, I waited until the weekend, but we’ll get onto that later. Yes, I have officially had two doses of Methotrexate so far, so I’m a newbie.

09:26 Aashi:   Yay. Welcome, so excited. I hope this will help you get with your journey and everything from here on out. I’m so excited. 

Ananthi:  Definitely. 

Aashi:   Jennifer? 

09:01 Jennifer:  Hi, I’m Jenny. Um, I am from the US and I was diagnosed with psoriatic arthritis in November. I was going to start Methotrexate two weeks ago but I got some type of infection so I’m kind of waiting to get the clearance on starting it in the next couple of weeks. So, I’m also a newbie. 

9:18 Ali:           Okay, can you guys hear me? Hey, I’m Ali. I live in the United States. I currently live in Atlanta, Georgia. I just turned 27 two days ago and I got diagnosed at the age of 15 with juvenile rheumatoid arthritis, and I started Methotrexate back in 2016. And I was on it for about two years. And then I thought I was in remission, went off for about four months, and then had to go right back on it again. And I’m currently on it. And that’s me.

10:00 Aashi:   Yay, welcome. Thank you, guys so much for sharing. I think everyone introduced themselves. Yeah. All right. So, next, we’ll go ahead and start talking about how our journey with Methotrexate has been. Um, anyone that hasn’t tried Methotrexate yet, or is just beginning to, do guys have any fears you would like to share it that maybe we can clear up for you guys? We can say like — and we can take time saying how we were all put on it as well, if you guys would like. Awesome. Okay, um, who’d like to go first? Anybody? 

10:27 Paulina:   I’ll happily go first.

                             Right. So, my journey into Methotrexate has been a pretty funny one, I would like to say, because of my silly actions. Um, right, so, what happened was, I was 18 and one morning, I woke up feeling like a completely different person, and not in a good way. And ever since that morning, I mean, I started going to the doctors. I was living in England at that time, now I’m living in Germany, and went to my GP, which then took a very long time, probably around a year to actually ended up at my rheumatoid specialist in England, which I saw him and I can’t say that I had a super great experience because it felt very — it felt very like a ticket, like I was just one of those people that she was seeing coming through the doors in and out. And she didn’t listen to my full story. She was just like, here. Here’s a stickman, where does it hurt? Okay, cool. We’ll do an injection here. We’ll give you these pills and start the steroids.

So, what happened in the beginning was I had a steroid injection into my whole body as in like, one into my bum because my whole body was very bad. But it didn’t do anything. So, she started me on the Prednisone, on the pills. So, I was on that for, I think, a good month or even longer. While I was starting my Methotrexate, which was also in the pill form, to sort of wait for the Methotrexate to kick in, I had to be on the steroids to actually be able to function. And yeah, so then I slowly started easing off the Prednisone, because you have to ease off of it and not come off of it drastically, or at least that’s what I’ve always been told.

And I, then immediately as soon as I was officially diagnosed and put on this medication, and I was told that this is not curable, and I was told that I’m going to have to take this for the rest of my life, I was like — hold on a minute. If I am going to be destroying my body, I mean, helping and destroying it at the same time with this medication, then I’m pretty sure there’s something natural that I can do to help my body fight it, or at least help it a little bit more.

                             So, I started going to my Uncle Google, and spending tons of hours of just googling, researching, just forums or things like that, but I didn’t have a community to turn to. Like, we — we are so lucky that we have that now. At that point, I didn’t know anyone who had it. No one in my family has ever experienced something like this. It was also new for my family to like adapt, I guess, because I was still living with my parents and luckily that I was, because without them I honestly wouldn’t be able to do anything. So, it was such a big like, adaptation for all of us.

 And because all of my Google searches started showing, yeah, like you need to go on this anti-inflammatory diet and maybe try this and maybe try that, I started experimenting with everything. And I went on a lot of vitamin supplements, I started doing a lot of different vitamin and nutrition changes in my body. And as we know, it’s different for everyone. So, it’s not like, “This is the diet, you follow, and it’s definitely going to help.” Um, so yeah, so I just started doing a lot of things by myself. I had three — every three months, I had to check in with my specialist. And I think after six months of being on the medication, honestly, I changed my diet like, extremely. I was someone who was very, very fussy with her eating, I would not, for example, at that time, I was still eating meat. And I was so fussy that I wouldn’t even eat meat on the bone because I was like, “No, I can’t do that. I need to eat it differently.” And I changed from being super fussy to actually experimenting with fresh fruits and vitamins. So, the change was super drastic for me. I never ate unhealthy, but I never really focused what I was eating. And anyways, for me, it has been on a very high dosage of Methotrexate. I think I started off on like, 25 or even higher, and I was on steroids for the first couple of months.

                             I went to my specialist. And then after I left her room where I literally didn’t get much support, I was just saying, “Do you know what, I’m feel fine. Now, I don’t have any pain. I’m doing this diet stuff. I’m just gonna like, throw the medication out.” And that’s what I did. So, overnight, I stopped taking my medication.

And I was very, very confident in myself that my diet is gonna get me there and I’m gonna do it all. And you know what, I was fine. For two years, I was okay. So, I actually was very lucky that that’s what happened. Because I mean, it could have been much worse. And then, after that duration of two years, I decided to move countries and I moved to Germany. I moved to Germany, and I think I was here for two weeks. And I had my massive flare up again in a country that I don’t know the language of, I don’t know any people. I don’t — I mean, I’ve had my partner here. So, obviously, he was very helpful. Our relationship was also very new and we were only together for like five months or four months, I think. So, it was like, great. I just came to move in with you and live and create a life. And here I am sitting on my bed, I can’t even do anything by myself. 

                             However, I consider myself, once again, in this situation extremely, extremely lucky that I ended up in Germany in Munich when this happened. And the flare up probably happened because there was a lot of change in my life happening. There was a lot of stress, a lot of new experiences, and my body definitely felt it. And luckily, Munich, where I am, I’ve had amazing experiences with doctors here. I went to a — oh, gosh, I don’t know the scientific name, but like the doctor who looks after bones and all of these things, because that was one that my partner was already seeing so he kind of knew him and I managed to get into him quicker.

He saw me and he was like, “Oh, okay. Well, we know you have arthritis. So, you actually need to see this specialist but you can’t go to see that specialist with a referral from a different doctor.” And he was — I’m so grateful for him because what he actually did it was on the same day as I was in his cabinet, he called his specialist arthritis friend doctor which was fully booked if I wanted to actually go to her myself, and he managed to get me an appointment two days after seeing him. And I was like completely shocked that that was happening so fast.

I went to see her and she is like the best I could wish for or the best I’ve experienced in my past experiences of other doctors, being looked at my symptoms. She fully listened to everything I had to say. I could sit there as long as I wanted and talked to her. She examined all parts of the body that were achy and felt them, and the ultrasound, ultrascans, and all of these different things. And then she put me on Methotrexate again, but on the injection form. And in England, nobody even told me that injection form of Methotrexate existed. So, I was like, oh, okay. And obviously, for me anyways, I felt that injections was something that I felt more comfortable with as much as an injection does. And with the pills, now that I have a comparison, I’ve been on the injections for like two and a half years, I don’t have that many side effects as I used to with the pills. With the pills, I experienced a lot more hair loss. I still experience that a little bit now. But with the pills, I experienced it much more. And I was very fatigued. In the injection form, I still feel that but I don’t feel it as much. 

                             Okay, yes, that’s true. And yes, so — I’m sorry, I got distracted with the comments now. And I don’t know if I’m speaking too much, or whatever. But I’ll just continue. 

Right. So, yeah, so then she examined me and she put me on Methotrexate, the injections, which so far, I’ve had a really good experience with. I started off at a really high dosage again, but now I’m back and I’m slowly coming off of it. And I’m from 25, to — from starting at 25, I’m now down to 7.5. and I’m slowly decreasing it. So far, it’s was going well. I haven’t been able to decrease it much more because the winter here was actually a lot longer than usual. And that affected my joints. She was a little bit worried to take me off of it because we, I mean, for me, the weather impacts me quite a lot, actually, and the cold weather especially. So, yeah, so far, so good. I’m still experimenting with diet and exercise and movement. It’s very helpful for me. But this is just my own experience. I mean, every one of us is so different. Every one of us experiences things in such a different way that we can just talk about what’s helped each one of us. But I don’t know, did I miss anything? Does anyone have any questions? Maybe I didn’t go into enough detail about something.

21:33 Aashi:   No, I love how you also talked about the side effects. So, from here on, we’re just combining the two questions. That way we can all just have this organic discussion. I love how like your doctor’s experience has been totally different in Germany versus when you were in England. And I’m happy you got to move there. Yay! Does anybody else also like prefer pills over — I mean, injections over pills? Because — what do you think, Cheryl? How do you feel? Have you tried both also?

22:22 Cheryl: Yeah, yeah, I was initially put on pills. And I did them for a long time because I liked the convenience. Um, so yeah, after I had my son, which was 11 years after my diagnosis, my body changed like in a lot of ways. So, I became — my stomach became more sensitive. And so, I noticed that I was just slightly feeling nauseous. So, my doctor suggested doing the injection to be easier on my stomach. So, I prefer that but, um, yeah, I have no needle phobia. I know for some people, the needle phobia makes it hard to do the injections.

  Aashi:  Yeah, thank you. Um, did you want to go ahead and share how you were first put on the meds?

23:00 Cheryl: Yeah. So, what’s funny is most of my stories from my journey of rheumatoid arthritis are really long, like my diagnosis saga, I call it a saga because it was really, really long and painful. But like, my journey with Methotrexate was really quick because I was diagnosed — okay, when — at the age of 20 in 2003. So, there was no Facebook, there was no Instagram, there was nothing. Like, Facebook was literally being developed at Harvard at the time.

So, they just — it’s really hard, I think, for younger people to imagine that you would get a diagnosis and you just listen to your doctor. Like, there was no sort of like — I mean, of course, you would look at the side effects on the little thing from Walgreens, but I literally, I have a lot of really vivid memories from that time. But I have no memory of any concern about Methotrexate because, um, for me, I had been in so much pain physically and emotionally for years, and then I finally had a doctor that was listening to me and told me, “This thing can give you relief. Yeah, it might have some side effects. But the evidence says that this is the most likely thing to give you relief.” And I was like, “Yes, give it to me now. Like, I will pay you $1,000 for this,” you know, and they’re like.

So, and it’s been really fascinating. I didn’t, and I’m just lucky that this I don’t experience a lot of the side effects other people do. I’m actually on 25 milligrams of Methotrexate now. I’ve slowly climbed up over the years from like, 10 to 25. Again, I didn’t have to go up that high until after my son.

I don’t want to scare people who want to have kids, lots of people with RA can have kids and my condition’s pretty well controlled now. But it was — it was dicey for a little while. And so, I had to try, we had to try lots of different things. It was like whack-a-mole. 

So, um, but you know, and I have to say I have a little bit of tiredness afterwards. But I know a lot of people talk about the dreaded Methotrexate hangover. And I literally didn’t hear about that until like the late 2000s when I was on social media. I was like, why do people keep talking about the Methotrexate hangover? I’m like, are they talking? I actually took it literally because I thought that they meant — because you’re not supposed to drink when you’re on Methotrexate and supposed to drink alcohol — so, I thought, “Oh, they like, are having a hangover, because they accidentally like, drunk alcohol while they were on Methotrexate.” But actually, no, they’re talking about fatigue.

So, um, so yeah, I did not have any fear about it. I was like, purely just relieved to have an option. And, again, this is like really nerdy, but if you look into the history of methods of rheumatoid arthritis treatment, like the late 90s and early 2000s is right when they had first come out with the biologics. So, the rheumatologist went from like, “We barely have anything for you,” to like, they are like excited. Like, the rheumatologists are like, “We have these amazing meds that can like change your life and like change the trajectory of the disease so that you don’t have guaranteed permanent joint deformities.” So, I was like, “Sure, sign me up!”

So, you know, um, and I know we were going to talk a little bit about yeah, advice for injections. Just real quick, in general, my advice for injections is to go quicker. It’s kind of like ripping the band aid. So, the faster you go, the less it hurts. Definitely, when I had those — I mean, I don’t have a needle phobia, but it was still hard. It was a learning curve to learn it.

And sometimes I still am like, a little bit like, “Um, ooh, oh, yeah, I’m not gonna go very fast.” And then it like, hurts way more. So, just just go for it. And I like control, so I prefer to do it myself. I wouldn’t want someone else doing it for me. But still, everyone’s different. But yeah, that’s my journey. Any questions about that?

 Aashi:  Yay. Thank you so much for sharing, Cheryl.

Cheryl: You’re welcome.

26:35  Aashi:  Your journey has been really long, so it’s really good to hear over the years how you have, you know, found ways to control your disease and have your body do whatever you want it to do. You know, sometimes, you do have to succumb to your illness. But I think for the most part, you are always such a bright positive energy. So, thank you for sharing. Is there any questions, guys, for Cheryl?

27:00  Paulina:  No question from me, but I’d love to just add on top of that about the injection tip. I have the same. I, in the beginning, when I was first put onto it, the nurse had to do the first injection to show me and that was scaring me more than what I’m doing now. However, even now, I’m like three, two, one. And then I close my eyes and I do it. And even though I’ve been doing it every single week for the past two and a half years, and actually, what bothers me more — and I mentioned it on my Instagram the other day, or was it yesterday or today — that actually what makes me feel nauseous is the smell of the antiseptic wipe than the actual injection itself, which is very funny. So, I don’t worry when I’m doing it. Because it just makes me feel —

 Aashi:   Oh, my gosh, I totally agree. I think you end up making these connections in your brains to, I don’t know. Yellow pills, for me, is it like, in circular pills, I hate them all now. And I didn’t even have a pill phobia. I would be able to swallow eight of them at a time. I did 12 one time when I was taking the Methotrexate pills. Now I do one at a time. It’s just — my Sulfasalazine now is super huge, and I just don’t know why they make them so inconvenient.

28:30 Cheryl: A quick tip for pills, and I don’t know how I figured this out, but if you take a really deep breath before swallowing it, it goes a lot better. I have no idea why that is. Or, I mean, you could always ask the pharmacist whether it’s the kind of pill that you can, you know, cut into with a pill cutter or grind. Oh, it’s not — Sulfa’s are known for being some of them, yeah, harder. But taking that deep breath, it’s almost like I don’t know if it opens your throat up or something. But it’s what I’ve done when I had to take the prenatal vitamins, which are also notoriously huge. 

      Aashi:     They are enormous. Yeah. Okay, thank you guys for tuning in. Ali, did you want to tell us your journey with Methotrexate?

29:16 Ali:        Yeah. So, like Cheryl, my journey is really long, so I’ll try to make it short. So, I didn’t go on Methotrexate when I got diagnosed. So, I got diagnosed, I had MRIs. I had my knee drained three times, and then it had arthroscopic knee surgery in my right knee. And they went in there and they took all the gunk out, is what I call it. And I had like a tumor in there and so, they took that out and — a benign tumor. But they took it out and they tested it. And they said it was rheumatoid arthritis. And this was back in Saudi Arabia, which is where I was living at the time. It’s where I grew up. And funny, actually, they couldn’t find it in Connecticut. They didn’t see the tumor; they didn’t see anything wrong. So, I actually got diagnosed in Saudi Arabia.

And then, so that was back in 2009 and I was actually good for six years after that. So, no medication, nothing. The surgery did really well. The surgeon actually said, “You’re probably going to be good for five to six years, but then it’s going to come back.” He was like, spot on. So, six years later, it came back. And I got my knee drained and then after that I was fine. And then fast forward a year later, it all came back in like full force. So, my knee got inflamed, I had to get a drained. And I was in denial that I had RA because it was only in one joint. I had it nowhere else, just my right knee. And so, because of this, I went to every single doctor you could go to. I went to different countries, I went to Italy, Saudi Arabia, and the States. I saw doctors in Florida, New York, New Jersey, Pennsylvania, and that was in a span of seven weeks.

And every single week, I had to get my knee drained. So, for seven weeks, I was either on crutches, a cane, or a wheelchair. And this was back in 2015 to going into 2016. So, by the seventh week, my doctor in Florida was like, “You know what, if you get drained one more time, this will be your eighth time in the past seven weeks, and you’re at super risk for infection. You can’t do that anymore. You’re gonna have to go on Methotrexate.” And at that point, I was like, fine, whatever, I’m done. Like, I can’t walk, I got tested for Lyme disease, I got tested for everything and everything came back negative.

My knee got so bad within that seven-week period that they were like, “You’re gonna have to have surgery again,” because there was just a lot of built up over the years. And so, I went on Methotrexate back in 2016. I gave in. And like Cheryl, I didn’t have social media at the time. I mean, I did, but it wasn’t like I have now where I’ve met all of you. So, I didn’t know a single person with RA. I joined a group on Facebook and it was all ladies in their 70s, and it made me so depressed and it was awful. And they were telling me that the Methotrexate is gonna kill me. It was just a mess. 

                             And so — and no one in my family has it. I’m the only one — and so, it was really hard for me. And when the doctor gave me the pills, like Cheryl said, I was just like, all right. Like, pills. Like, I had a pamphlet and I read it, and I didn’t even know it was a form of chemotherapy at the time. Like, I was just like, “All right, the doctor gave me these pills. I’m gonna take it.” And so, I took it and my mom was with me at the time, and I was feeling really sick. I just remember being super sick for the first two months in and not really knowing why. I just thought, “Whatever, it’s my RA.”

And so, it wasn’t until like, two years later in within those two years, I had surgery again. And I was on it for two years and then I was like, I’m gonna make an account because I just need to meet people that are going through this, because I feel like this is hell and I can’t do it anymore. So, I made the account and I met a ton of people who were on Methotrexate, and I learned it was a chemotherapy and I realized why I was having the hangover.

And I’m on the pills. I stuck to the pills the whole time. I’ve never done injections. One, because I didn’t even know that was a thing. And two, I handle the pills really well. I do get a hangover; I’m actually having one right now. I took mine last night, and I’ve always been on 10 pills this entire time, so 25 milligrams, and my doctor was like, “If you handle the pills quite well and you don’t really need to do injections. Like, you can if you want, but right now you don’t have to.” It was kind of inconvenient because I was traveling a lot and she was like, “It’s fine, you don’t have to.” And I don’t really get nauseous, I just get tired.

So, yeah, and then in between those couple years of being on Methotrexate, I made myself go into remission. Kind of like Paulina, I went off of it myself. I was like, “I can do this. I can do the natural route. I’m doing it.” I did it without telling my rheumatologist. I weaned off it correctly. I did it within a couple months. And then I went in and I was like, I’m on zero pills. And they were like, “Uh-uh, this isn’t good.” And then three months later, it came back. So, that’s my story. And I’m still on 10 pill a week. And yeah, I handle it well. That’s me.

Aashi:   Yay. Thank you for sharing. I’m so glad the pills worked for you. And wow, that’s 10 pills, I love all the consistency and it sounds like it is definitely more convenient to how you were living at the time. Does anyone have questions for Ali?

34:22 Cheryl: I have a question. Have you always done videos of you injecting yourself — I guess with your other medicine, but I think that would be something for people who haven’t followed you to know about, that you do entertaining videos of your medication delivery. 

34:37  Ali:       Yes. Like, she was saying, I’m on Enbrel, which is an injection. It’s a biologic and I I’ve been on it for a year. And for those that are afraid to do injections, I, too, was very afraid. And so because of that, I started filming myself. Every single injection, I filmed myself or I go live on Instagram. And it’s been like this for a whole year because I feel like it’s more fun to do it with people around. It also gives me the confidence. And like Paulina, I did it with my nurse for the first time. And it is a little scary to do it yourself.

So, if you make it fun and entertaining, it’s actually a lot better. And I really encourage you to do it with someone, don’t do it alone if you — I mean, I know it’s COVID and, you know, you have to — but if you can just like get on here and get on Zoom or if you want us to get on Zoom with you; like, having someone there with you to make it fun, also music, it really, really helps the nerves. So, that’s my advice.

        Aashi:   Yay, thank you. Yes, making it fun definitely helps. Helps it be a little bit easier. All right, Ananthi, would you like to go ahead?

40:35 Anathi: Sure. Yes. So, I started getting symptoms beginning of this year. And it started off with my knees and my feet. And I was the first person to blame the gym. I was like, if exercise — if it comes from exercise, it’s got to be that. So, yes, so I thought it was that. And as part of my work, I then had to go for a conference. And on the night of the — the night before I was due to go, the conference was in London, I had to take the train, I felt like I’d sprained my wrist. But I don’t know, I didn’t do anything to sprain my wrist. So, I strapped it all up and everything and did what I would, put ice, strapped it up. The next day, the wrist pain had completely vanished. But the shoulder was completely gone.

And I was like, what is going on? I still had to go to this conference. I went. And it just, it was just like it was my joints were on a rotor. That is the only way I can explain it. They were just taking their own turns, “Oh, it’s my turn now, I’m going to hurt you, I’m going to hurt you.” And it just went from, I would say, neck down I was in pain. My head was fine. So, in the end, I decided to go to the doctor because that’s just wise and immediately they had blood tests and everything. I was one of the lucky ones in the sense that my rheumatoid factor was positive. So, I didn’t really have to argue with what it may or may not be. 

                             However, that blood test result came at the end of March. I was given an appointment the third of April which probably got cancelled because of COVID. So, the hospitals were just shut basically, all the outpatients, everything.

So, I was left to my own devices. So, I’m the kind of person that number one, I’m allergic to Ibuprofen and the anti-inflammatories. Not ideal. So, Paracetamol was my friend. To be honest, didn’t really touch the sides with the pain, but I’m also not a medication taker. So, it probably did its thing but I managed to — I took Paracetamol once a day. That’s what I did. But that that’s just me. I just power through.

And I was going, like the other girls have mentioned, I was going via the natural route of like, turmeric and omega-3’s and everything. But seeing on the internet for a while, oh, it’s gonna take 8 to 12 weeks to work. But I had, everything was out of my control, I had to just wait for my appointment. In the meantime, do what everyone else does, turn to Professor Google. The difference is, my background is science. I’m a biologist. So, I come from an angle where I know a little bit more and that’s not necessarily a good thing. So, during my PhD, and I was working with these cells, these are like gut cells. And these cells, to make them do what I needed them to do, I added Methotrexate to them. So, I was physically watching these cells change, not necessarily in a good way. I was watching it through the microscope, and I was sitting there reading on Google, the treatment for RA is Methotrexate.

So, yeah, it was tough. To accept that I may need this was not easy. So, again, going through the natural route, Paracetamol, omega-3’s, and everything, and I think it got to — so, this was from April, it got to about mid-May, when my body was not giving. I was struggling to walk for more than 10 minutes at a time. Squeezing toothpaste took two hands, you know, it’s like when it’s got to that kind of level, you’re like, “Okay, I need the help. It’s gonna have to be whatever the doctor gives me, I will take it. Doesn’t necessarily mean it has to be long-term. But I will take it.” And so, I came to the acceptance. 

                             I finally got seen two weeks ago. And lo and behold, I was given the Methotrexate straightaway, along with the steroids, because of course, Methotrexate takes its time to work. So, I’ve been given Prednisolone, yes, to start with, and then to wean myself off over a six-week period, and Methotrexate, 15 milligrams. So, taken two doses.

Again, it was more the fear factor beforehand, but it wasn’t so bad. It was — I started getting a little bit queasy on Saturday night, but it was like half 10. So, I went to bed and I woke up and I was fine. And yeah, I’ve been absolutely fine this time. Actually, last week, I had a headache. This time, absolutely fine. So, um, water has been my friend. I’ve noticed Cheryl had a question.

46:00 Cheryl: So, I have actually never tried the natural route because — and I’m just always curious when people do and especially as a scientist, because for me, the evidence is so much stronger for the Western medicine, like that it can slow — because I do remember my doctors telling me like, these medicines are, you know, 75% of the time guaranteed to slow down disease progression and give you the best chance of lifelong function and lack of disability.

So, I’m just curious when people like… I see the diet and the natural route as risky, more risky than the medicine, but I know I’m like weird for that, because it’s so common for everyone else to not want the medicine. So, I don’t know what is different about my brain. But for you as a scientist, did you look at the data for Methotrexate effectiveness, or is it more just the knowledge of why metho — how Methotrexate interferes with cell metabolism and like, that is like fundamentally scary.

46:45 Ananthi:  Yeah, it was more the fear factor behind Methotrexate of what it’s physically doing to cells because even though — it’s a strange one, because at large doses, it’s chemotherapy, but it’s small doses, it can cause cancer. So, there is that — there is that kind of thing. Whereas, I’ve been in a strange situation for myself where I’ve had cancer, I’ve had ovarian cancer, but I didn’t have chemo. See what I mean about not being a medicine taker. I had operations remove it. I was offered chemo, but then I said, prove to me that it’s still there and prove to me that the chemo is going to give me an extra benefit. They couldn’t. I didn’t take it. I’m fine. So, touchwood. All the wood.

But um, yeah, with Methotrexate, it’s obviously the benefits far outweigh the cons. From a natural point of view, everyone can be a cynic. The research is pretty good for the omega-3’s, which is why I went there. And also, from a personal observation, whilst I was on my own without seeing the doctor, I was struggling from a pain point of view, but I was also losing a lot of weight as well. So, I think I lost about 14, 14, 15 pounds over about a week period. But then once the — well, I feel the only thing that I was taking that could have helped me was changing my diet a little bit and taking the omega-3’s and the turmeric supp. Well, not even a supplement, I was having it as a drink. But my weight then went up three pounds, and I feel like that may have been influenced somewhat by that. I don’t know, there’s no other explanation for it, really. So, but yeah, obviously I’ve succumbed to the medication.

43:37 Cheryl: And I’m sorry, I didn’t I did not mean to be like putting you — I realize now that I didn’t mean to be putting on the spot to like defend your choice to go natural. I was prompting that question only because it’s such a common question people have and we could do like an eight-hour long panel about.

And I’ve gone to a naturopath and I have experimented in the last 17 years. I was just thinking back to when I was first put on, like it didn’t even enter my mind to try anything else just because I think I was probably just extremely desperate. And I had lost 25 pounds on like a very small frame. So, I feel, I mean, it’s a terrible experience.

There’s something I didn’t even know until I started researching it later called rheumatoid cachexia, which is severe weight loss caused by uncontrolled inflammation from rheumatoid arthritis. It’s like a thing. And no one even explained that to me. They just were like, “Yeah, your body’s just kind of messed up now because you have RA.”

And then anyway, so I’m like ‘throw the kitchen sink at it’ person. I just, it makes me — I get scared for people when they throw the meds completely out the window for natural because I’ve seen just people who have then experienced joint, you know, side effects that they can’t turn back the clock and then they wish they could. So, it’s a very complicated thing. So, I did not mean to put you on the spot. I was just curious, especially as a scientist, I thought that was kind of interesting. 

Ananthi:          No, I don’t see it as putting me on the spot at all, no. 

Cheryl:             Oh, good. Okay, I didn’t mean it like, “Why did you do this.” Not what I meant. 

Anathi:             I know, not even.

Cheryl:             Okay, good. Okay, good. I respect everyone. Yeah.

47:21 Aashi:   Yeah. And I think Kristen in the chat did mention that you’re right, there is no funding for natural research, And the fact that there is no natural like funding for natural research coming out of medical schools, like that’s crazy, but like looking into more osteopathic schools, like I’ve actually found that they do have a more naturopathic approach at least.

So, maybe that’s a tip, find an osteopathic medical practitioner around now. They might have more alternative options, if you are looking to go without Methotrexate or just another of the heavy, you know, medications. And then I don’t know who is next.

Ananthi:  Just to add one more thing. I don’t think, when it comes to the natural route, it’s very — it, number one, lack of funding, but also, I think a real big thing is — Cheryl just said she’s going to look into the omega, this is good. I’ll get onto that in a second. But yeah, my point was that everyone reacts differently. And it’s not so textbook as conventional medication where you can more or less rely on that.

Whereas with the natural medication, what works for someone may not work for someone else. So, I think that’s quite a difficult thing, and that’s why. And whilst you’re waiting for things to work, you could be doing yourself a fair bit of damage as well.

So, I think you’ve got to be quite open to a lot of things. And what I did find out when I was reading about the omega-3, which I don’t think many people know about is that there are two different — well, actually, there are three. There is omega-3, omega-6, and omega-9, but omega-3 is the one that you need to focus on for anti-inflammatory. And if you have an imbalance of an omega-6:omega-3 ratio, you end up being more inflammatory than anti-inflammatory, if that makes sense.

So, it’s always worth looking at what foods, supplements, etc., are in omega-3, and kind of making sure they outweigh what’s in your omega-6 foods because it’s kind of easier to get omega-6, but not so easy for omega-3.

Aashi:               Thank you, that totally makes sense. And nutrition is such a key thing as well. I think, thank you again for sharing. And are there any more questions? Awesome. Um, can I — I don’t know who was next. Any of us. Jo?

47:43 Jo:          Okay, yeah. So, like I said, I was diagnosed when I was 19. That was in between my first year and second year with uni. I was all alone when I started getting symptoms, which is even more terrifying. And I’m originally from Romania, so I had to go back home for the summer holidays, and I was saying to my mom, “You know, I’m unwell, everything hurts. I’ve tried a lot of painkillers. And nothing was doing anything for me.”

And she got me an appointment to a rheumatologist. But, you know, she couldn’t do much except send me for loads of blood tests at the time, and I was seeing a lot more specialists to figure out what was going on with me. And it took about three months for it to come back as rheumatoid arthritis because they were unsure between that and lupus.

And to be honest, I don’t remember much from that time, except that when they gave me Prednisone, because the pain got so bad, I just had the most amazing nap. But that’s about it. And they told me about Methotrexate. But my mom is very much the natural way person. And I forgot to mention, but the same as an Ananthi, I am a biologist. So, I know a bit more about what’s going on but it’s not always good.

But very much at that time, my mum was kind of controlling what I was taking. And she said, “You know what, we’re gonna try a natural way first, and then go from there.” So, that’s why I didn’t start my Methotrexate until the following year. And so, I did genetics as my undergrad. And in my second year, everyone’s favorite condition was rheumatoid arthritis. And it was terrifying how much they were talking about it and all these treatments. And I thought, you know, I have to — I have to do something because I had almost no mobility in my right hand. And that was a very helpful university because I couldn’t type, or write, or cook, or brush my hair. 

                             But yeah, I finally got up an appointment with the rheumatologist here in the UK and they put me on the Methotrexate pills. I think it was 20 milligrams at that time, but I just wasn’t tolerating them well. They made me super nauseous, very tired. I used to take them on a Sunday evening. And I remember on Mondays, I could almost never go to uni because they made me so sick. Yeah, I was really scared of the injections because I was a bit of a — I had a bit of a phobia, but after having to do a lot of blood tests, it kind of went away. But I was a bit apprehensive when they suggested the injection again, but I thought, you know, it does absorb — your body does absorb it better in the injection form, so it was worth giving it a shot, especially if there will be less side effects.

And I was really scared. I think I was with a nurse, and it took me about an hour just to inject myself. And I was really embarrassed at that time because it seemed like a waste of her time. But yeah, I was tolerating the injection much better. I quickly became a pro at it. But yeah, so except the Methotrexate I’m also on Sulfasalazine. And I used to be on Hydroxychloroquine as well, but that made me really unstable so they got me off it. I think that’s about it.

51:50  Aashi:  Yay. Thank you so much. I’ve actually met very few people who are also on Sulfasalazine because I guess they’re more like older treatments according to some life health doctor I was talking to, but it does work for me with the combo. Thank you. Are there any questions, you guys? Awesome. Thank you for sharing.

Um, so I had said I would go next and I think my story is also like everybody. It is a saga. So, basically had symptoms since I was 14 years old. It first started in my wrist. It was a bone that was sticking out. We went to the ER, I wasn’t insured. And we had emigrated to America about three years ago. So, we obviously didn’t have insurance or anything. So, getting diagnosed is not even in the question. They basically threw a splint on it, told me to go look at it, get it checked out by an orthopedic surgeon, and no orthopedic surgeon around my area would see me without insurance because of liability concerns. So, basically never got diagnosed. And then I had a lot of pain all throughout high school, and a lot of — I don’t know, just a lot of pain all throughout college as well. And I started powerlifting in college.

So, when I started having a lot of pain again, I was like, “Oh, my gosh, it’s because I’m working out.” And I was totally blaming the gym. I had actually won a competition in third place. I was really excited to keep going. But then I got scared that I was ruining my body, so I stopped and everyone was like, “Oh, yeah, it is definitely you’re working out that’s causing you to be in so much pain.” And I don’t know, ever since I quit, I had — I started hurting even more because it was actually helping my circulation, getting the exercise I needed. 

                             Um, so basically, things got a lot worse, where I was working at a senior living and I was on my feet all day. I got put on Methotrexate a year and a half after. I was in my worst flare. Since then, I’ve had so much cartilage damage in my left ankle and toe. The bones basically now grind against each other. So, that’s damage that I can never get back. Like, that’s cartilage that I can never get back and that damage is going to be there forever.

So, basically, I still limp all the time and I didn’t think Methotrexate was doing anything for me until I went off of it two months ago. And since then, my entire body is flaring. I don’t know what is going on, you guys. My hands, my wrist, my elbows, knees, hips, neck. Although my doctor said it doesn’t affect the neck, but I can definitely feel something in my neck and my jaw as well as having some inflammation, I notice. So, I don’t know, I don’t know if anyone else had that experience with your jaw. Um, and then my side of — you as well? Thank you. Yay, I’m not the only one.

So, I actually stopped chewing gum because I thought that’s what was causing my jaw pain. But no, guys, it was not. Um, anyway, so my side effects with Methotrexate are so bad. Yes. See, yay, everyone agrees! Jaw is evil. I don’t feel alone.

And that’s why I like love this community. I just — I never knew anybody else’s mouth hurt. I thought that was me because I talk so much. But um, I have really bad side effects. Oh, thanks, Cheryl. That’s really interesting. A tiny joint in my throat. I wonder if that’s ever been an issue for me. That’s interesting. Thank you for sharing.

For me, side effects from Methotrexate are nausea and my stomach hates me for it. But I’ve also had those symptoms going on since I haven’t been on Methotrexate for two months. So, we’re thinking now that it’s probably an outside GI issue. I’m currently uninsured so can’t get that checked out. But my Methotrexate, I can’t get back on Methotrexate fast enough. And I will never go off of it again unless I want to have children someday. So, yeah, guys, that’s my story. You guys have any questions? Awesome. Anybody who would like to go next? Let’s see.

57:00 Kristen:   Okay, I can go first. And so, I was — I feel like my diagnosis story is very brief and I feel extremely grateful and lucky for that experience, because I know that that’s not necessarily typical in our community. My dad has rheumatoid arthritis and my mom has Sjögren’s, so I’m a perfect combination of my parents. And I think that’s actually why I knew what it was so quickly.

Um, so I started — my first like, ‘Aha!’ symptom that brought me to tears was my shoulder. It was my right shoulder. I woke up in the middle of the night with the most severe pain I’ve ever experienced in my life. I was crying, I couldn’t sleep the rest of the night and I told my husband that morning that I had to go get it checked out. I was like, I don’t know what I did. I was rowing a lot at the time, so I blamed it on rowing, which rowing is like one of the most gentle exercises you can do for your shoulder, it’s very low risk. So, that didn’t make a whole lot of sense.

But I went to the doctor and they were like, here — they did X-rays, everything was fine — they were like, “Here’s some anti-inflammatories. Take these, put your shoulder in a sling, and you’ll be okay.” And then like a week later, it shifted sides. And I was like, okay, this is not an injury. This is probably rheumatoid arthritis. And so, I went back to my general doctor and they ordered labs, just like the full gamut, testing for HIV, Lyme, and just everything. They got those results back. My rheumatoid factor was actually negative at the time, but I think it was my — I always get these confused, but I think it’s like CRP? Does that sound familiar to people? That was high and so some other things were off in my labs as well. So, they sent me to a rheumatologist.

                             It took four months to get into my rheumatologist, so I was just waiting in agonizing pain, but you know, that’s just life. And by the time I got into see my rheumatologist, my rheumatoid factor had increased so high and it was off the charts at that point. So, right then and there, I got diagnosed with rheumatoid arthritis and Sjögren’s.

Like I said, I was put on Methotrexate, 20 milligrams that day. So, I started my dosage two days after. I was really nervous when I first started taking it just because I had seen my dad taking it. And while he tolerated it, he tolerated it well. But, I mean, you know, he’s in bed like the day after taking Methotrexate with the fatigue, and just, you know, not — it’s not your normal life, right. And so, that’s one thing that I think I wasn’t prepared for when I got diagnosed, was not fully understanding or accepting that like things were going to have to change. This was not just going to be business as usual. I was going to have to grieve for kind of my former life and what I thought I was capable of doing was going to look a little bit different from here on out. And so, I’m still kind of dealing with that. I think I have my ups and downs. I’m in my final year — hopefully — of my PhD. program, and I’ve had to really change my pace a lot.

And it’s been tough, not gonna lie. But yeah, so I’m gonna say, for my symptoms, but the side effects are definitely something that, you know, I wish it wasn’t there. But unfortunately, that’s not reality. So, I’m grateful for the medications and not so grateful for the side effects.

55:17  Aashi:  Thank you for sharing, Kristen, and I can’t agree with them more. There’s just — I don’t think there’s any way we can really prepare for starting to mourn our old lives. And I think that’s the biggest thing I’ve seen, especially in my household, just mourning our like, former lives, is the hardest part. Thank you for sharing. Does anybody have any questions for Kristen?

   Cheryl:       Kristen, I know that — if you’re comfortable talking about it — I know you’ve been experimenting with some other ways to like minimize some of the side effects like fatigue. Um, is that something you’d be wanting to share?

55:50 Kristen:   Yeah, yeah, I can definitely talk about it now that I have the data. Um, so let’s see, I think it was four months ago, I had my remote telehealth appointment with my rheumatologist and I was complaining about some of these symptoms that I was having. I was experiencing a high level of fatigue, chest pain, and what else, brain fog, the lovely brain fog. And she was kind of like, “All right, is this, you know, inflammation? Or is this a side effect of your medication? And let’s get some data.”

And so, I’m a Board-Certified Behavior Analyst. So, when you tell a Board-Certified Behavior Analyst to get some data, we roll with it. We get excited. So, I made up some data sheets for myself and I started tracking my behavior. About two weeks into tracking my data, I started taking CBD, just a tincture. And I decided to kind of see like, all right, what kinds of effects might the CBD have for my particular symptoms and my behavior. And so, I took CBD for an entire month while taking data on my symptoms every single day. Then I removed the CBD for an entire month while taking data every single day. So, I now have about three months worth of data, both with CBD and without, and since then I’ve been able to analyze the data. I just did that this weekend and it was super exciting. 

                             Because what I saw that the conditional probability of my fatigue and my brain fog symptoms was higher when I was not on CBD. So, CBD actually decreased my likelihood of feeling some of those symptoms that we commonly feel from, you know, Methotrexate, that fatigue, that brain fog, I’m much more likely to feel a lot better when I’m taking CBD regularly. So, that was really exciting to me and it was a nice way for me to justify that extra cost because CBD is expensive, which is why I wanted to do a treatment evaluation on it. I was not trying to spend that money. We already spent so much y’all, like on different tests, and different treatments, I did not want to add something into my regimen unless I knew that there was data to back it up.

So, it turns out there is which is great, but also like, darn, I have to spend that extra money, but it’s okay, because I’ll feel better. And so, I’m excited to share that data, those data, with my rheumatologist when I see her again next month.

1:03:00 Aashi:   Yay. Oh, my gosh, that is super cool. I love that data. And we talked about it yesterday about behavior and advocacy with that, I think, where I’ve used behavior analysis on myself. I am just a RBT, I worked with kids on the autism spectrum before and I want to be a BCBA and have a PhD just like Kristen, which is like, what? And that totally blew my mind the other day. But I love how passionate you are and that you are bringing it to the chronic illness world. I know it will help and definitely with the CBD, I think I’m lucky to have family members who actually sell them as a business. So, I do get them at like cost price, which I do appreciate. It is such a huge expense. Thank you for sharing. Jenny, would you like to go ahead?

1:04:00 Jenny:  Sorry, I’m on my phone so it’s kind of weird. But kind of like for Kristen, I have — I’ve had psoriasis since I was 12, so they’ve been watching my joints for a long time just to see if it would come on because it’s kind of an expected thing. But I had a scare two years before. I actually had the real arthritis, kind of my wrist started to get a little sore. So, they checked me out for like the CRP which measures inflammation, and they checked rheumatoid factor and everything, and it was negative. So, two years from that, then we kind of just let it go and it wasn’t anything. And then last year, I think it was sometime around then, I started doing HIIT workouts. So, sprinting and running really fast and doing that type of — type of thing.

In the US, I don’t know if Orangetheory is a thing everywhere, but it’s a high intensity interval training workout program. So, I was doing that about five times a week and really got into it. And in the summer of last — or around August of last year, I started to have some hip pain while I was running, and I had a running buddy that we would try to, you know, compete with each other. And eventually I couldn’t keep up with him and I was kind of — I started, I remember being like, my hips just feel really like weird. It feels like I’m like rusty or like it’s like I’m like the tin man and I can’t get myself to go as fast as I was going before.

So, I went to the doctor immediately with that and she noticed in my toes — so, psoriatic arthritis is kind of weird because it affects some joints or not other joints and it’s not really on both sides of the body, and it’s kind of weird. But she noticed that my toes were swollen, kind of they call it like sausage like looking toes. So, she kind of found that and was like, “You know what? This seems like it’s psoriatic arthritis.” So, immediately, she got me into the rheumatologist and it was going to be like a six-month, but then somebody got —somebody cancelled their appointment and they called me and I got in right away. 

                             They — the first thing with psoriatic arthritis and psoriasis is not actually Methotrexate, it’s Otezla, is what they wanted to put me on before. So, immediately I started Otezla and that’s kind of a newer medication that is specific to psoriatic arthritis and psoriasis. It worked okay, and for a little while, I felt like I was getting better. I started to like, jog again. And then I’m also a nurse. So, I started working more rotating schedules. For a long time, I was just doing day shift, but from the needs of the floor, it got moved around. I started working night shift, and the night shift actually really messed with my body and made my joints hurt so much more. I was limping every day. It was — and it would — I would only work a night shift Friday/Saturday every four weeks.

But the way that it would happen is I’d work my night shifts, and then it would take those three weeks to heal from the night shift. And then I’d work it again and it would take those three weeks, so I was never feeling okay. So, then I worked with my employer and we made it so that I could work during the day and that helped a little bit. But it’s still not great. And so, this is where the stuff comes where I start moving to Methotrexate. And like a lot of people on here, I’m a nurse, and I know a little bit more and sometimes that’s not always a great thing. 

             I’m an oncology nurse, specifically. So, I see the side effects of the 300 milligram Methotrexate, and I see more of the extremes. And it’s not a great thing, because I was talking to my rheumatologist and they love this drug. And that, you know, they’re like, “This is — it’s not something that you have to fear. It’s something that you have to respect because it is going to have some side effects. But it’s the safest thing that we know right now. And the most effective to keep your joints healthy and safe.” And I think that, along with the natural stuff, what people were talking about with sometimes maybe — I know, there’s not a lot of research with that but I think, for me, sometimes fear can distort our like, our idea of what is safe and what’s not safe.

So, it’s not necessarily rational that we’re more comfortable with the natural stuff, but it is natural. And so, sometimes I think we’re like, okay, well, our bodies are natural and natural things must be good. And scientific things that can cause cancer later on might not be good. And I think it’s not necessarily the fact that we don’t know that the Methotrexate is good and that it will help, it’s the fact that it’s scary. And so, fear makes us irrational.

    Aashi:       Yay. Okay, so, um, I feel like a lot of what you guys have said is, you know, we’ve covered a lot of advice too. But I wanted to go ahead and do some advice pieces for injections. Does everybody do — if everyone is on injections, are you guys planning on doing it yourself? Or do you already do it on yourself? Or does a partner help you?

1:09:00 Jenny:  Okay, I’m not on any injections and stuff and I haven’t obviously started the Methotrexate yet. But as a nurse, I can say that I, when I’m giving an injection to a patient, it’s — it feels better, I think, if you pinch harder than the poke. I always tell them that. So, if you can pinch harder with your fingers, then what the needle is going to feel like, it kind of tricks your brain into thinking that it focuses on the pinch more than the poke, basically. So, anything you can do to kind of trick your brain.

1:09:47 Aashi:   I love that. I also love using an ice cube to numb the area. My nurse told me that. She could — I think she could feel how much I was sweating sitting in my office that day. But the ice cube thing, I haven’t had to try that yet. I’ve gotten shots before by other people, just like regular shots and I get bruising really hard. So, I’ve used ice on those when I know it’s going to bruise but I’ve never had bruising in my tummy or thigh which is where I usually do my injection.

 Any — so, if your partner or family member do ever end up being the ones to give you an injection, this is my advice for them. Don’t take too long. Just go like, swift and easy like, swift like a cat, just swift like a cat.  

1:10:40 Cheryl:  I think this is going to sound really counterintuitive, but something that I’ve learned that applies to any just uncomfortable situation, something for me, I have anxiety, not around needles, but around like claustrophobia. I really, really don’t like — I’ve got I’ve gotten some MRIs; it’s really, really hard for me.

And I think, so I’m looking at this from like an anxiety lens. So, if you’re having anxiety about anything, whether it’s a needle or whatnot, and the — what your brain usually is telling you is make it better. Like, decrease the anxiety, make it better, like take a deep breath or do this. But there’s this — and Kristen can probably explain this better than I can — but I learned this different technique called Acceptance and Commitment Therapy, which is the one that’s worked the best for my anxiety. It’s like diet, right? Like, mental therapy things are like diet where the one that works for one person might not work for another.

But it’s where you accept that it’s going to feel bad. And you don’t try to say — like, you just say, whatever is happening in the moment, I can sit in the moment. I can sit — like in this, for me, the MRI is like a really hard thing. So, I’m like, I don’t like this. I’m not able to control right now what’s going on. And I’m accepting that. I can sit with it. I can tolerate it.

And like, making tolerance your goal rather than like feeling better or feeling great. It’s like, almost like reverse psychology sometimes where you’re like, okay, feel worse. And they’re like, oh, actually I don’t feel as bad, versus like, feel better, feel better, feel better.

So, that’s been like a really interesting — and that’s this really interesting approach. And I know it can work on anxiety — there’s evidence for working on anxiety and specific phobias, which needle phobia would be included in that. 

          Kristen: Yeah, I definitely can see that. Yeah, just to piggyback off of that, so Acceptance and Commitment Therapy. So, it’s a psychotherapeutic technique that’s actually rooted in behavior analysis and it’s extremely effective for a variety of things like anxiety, chronic pain even. And yeah, the whole idea is kind of like, life sucks. And that’s it. There’s no need to try to change it, because this is just reality, and this is just how it is. And the sooner you accept that, the sooner it gets easier.

And so, I just want to plug, you know, I don’t do injections for Methotrexate, but I do Humira injections. And, you know, I think that there is no shame in needing help. So, if you’re noticing that you’re having a really hard time injecting yourself or you don’t have somebody to help you, if you’re spending more than 10 minutes doing the injection, it may be time to ask a therapist for help. There’s no shame in that. Therapists exists for a reason. And I absolutely think that you will — your future self — will thank you for asking for help.

1:14:00 Aashi:   I agree. And also, if you don’t feel safe doing it yourself, my hands spasm. I throw my phone, oranges, everything, I throw everything on the ground out of nowhere. So, for me, holding that needle is terrifying, because I know I will spasm. So, if you’re, if you don’t feel safe, I know there are insurance plans and governmental assistance, at least in the United States and California, that will provide you home health nurse to come support you with your injections. You just have to tell your doctor that. She did offer that to me as well, because I was — I did tell her that, well, I can’t give myself an injection every time. Can I have him do it and learn it.

And I love that everyone is so different because it just goes to show that nobody’s going to have the same experience. And thank you everyone for sharing. Is there — I just wanted to open it up so we could talk and just kind of have more of a natural discussion now that we kind of know a little bit about each other and all of our information. And again, if you guys have to hop off, feel free to do so.

1:14:30 Ali:     One more thing I say to do is to spoil yourself after you do an injection. Give yourself a treat because you freaking deserve it. So, I mean, before I started injections every time I had a doctor’s appointment, which was constantly, I had to get blood work done. And I got myself some Starbucks because I was like, you know what, girl, you deserve this. So, now after I inject, I go get like some chocolate, or I go make my own latte, because we deserve it. So, that’s my advice. 

     Aashi:      Yay. Yes, I love that one. All right.

1:15:00 Jenny:  I think to touch on just some more of the fears for people who are just starting. Because I don’t know if I mentioned that, that sort of the things that I’ve been scared of. Once I got over the fact of the whole, okay, I’m gonna start Methotrexate, this is where we’re going with it, accepted that, I think another fear is the hangover a little bit more, that the next day, like, if you have a work schedule, that you can’t guarantee that you’re going to have a day off to recover, or you can’t guarantee that you’re not going to have to go through your daily motions. You know, with feeling like that, I think that was a fear. And the, just more of like the side effects stuff, I think a lot of people are afraid of that.

But I like how a lot of people touched on the hangover part of it is not the same for everybody. And maybe what is another good thing to think about is to treat yourself on that hangover day too, even if you have to work but, you know, doing something nice for yourself or, I don’t know, something to that effect. Because I think that the side effects and the — I think the fear of it is worse than the actual thing itself. So, until you start it, and I’m still in this space of having not started it yet, but until you start it, I feel like you build this thing up to be bigger than it actually is. So, if anybody watching this is feeling that also, it’s okay. Because I think that’s the biggest thing, is that all these things that we talked about, the fears of it, are worse in your head than they are in the real life.

1:16:40 Aashi:   I definitely would agree with that. My fears of Methotrexate going in were totally different. I do have crazy amounts of hair loss and some months like, I don’t have hair loss at all but some months I have hair loss like crazy. It really depends so much on what other things you’re doing in your life. If you are able to take a day off the next day, great, but my Methotrexate hangover doesn’t kick in until the Methotrexate is almost out of my system, which is about five days after my injection, then.

So, Methotrexate actually gives me a ton of energy but it also gives me nausea and hair loss. That’s my thing. But if I just eat bland foods the next day, I can basically get through the next five days. So, me, I take my Methotrexate on Sunday or Monday so I can get through the whole week and rest on the weekend and then recharge again.

Also, taking it right before you go to bed might help with the fatigue part because you’ll naturally sleep it off, I guess. That’s kind of how my doctor explained it to me. I usually do it in the morning. That way, I can be pampered all day long. And I feel like well, I got my injection today. Yes, thank you, Ali. Yeah, and I just love it. I love having people just be at my, you know, beck and call just, “Can I have some water?” I’m a princess. I’m the worst.

   Cheryl:       You are not. You are worth it.

    Aashi:       Thank you, it’s what I said.

1:18:20  Cheryl:            Yeah, I love all these ideas. I mean, the only other thing is to know that however it starts is not — sorry, not the only thing, I have to say, I’m sure all you brilliant people have more things to say — is like remembering that you can always mix things up later. And I think one of the things a lot of us struggle with is overwhelm, right?

So, even me having this for 17 years of being on — I’m on my third biologic and I’ve had a lot of things happening in between. And it’s like, it can sometimes feel like — I joke with my doctor and my therapist — like a butterfly flapped its wings and Africa and the like, you know that thing with like, if a butterfly flaps its wings in Africa, like the weather changes where you are, it’s like, well, a butterfly flaps its wings and now my left pinky hurts. Like, I have no idea.

\But if you do start, like Kristen is a big, you know, real, hardcore data collector, I’ve been able to kind of get away with not being as perfectly, maybe of a data collector, but you can kind of start saying, “Okay, I’m gonna start it at night and see how I feel the next two days and kind of first briefly journal about that,” and then try it on the morning the other time, and then just you could, you actually can start feeling really empowered by the idea that, oh, I’m kind of in charge of tweaking things. And yeah, so I think that that that can be really useful. Um, yeah.

And I think that’s — oh, yeah, the other thing is scheduling. I do, because I don’t seem to have the severe fatigue a lot of people experienced, but I do feel a bit tired the next day, like I mean, I’m just used to feeling tired at this point. But I’ve started taking it closer to the weekend, like Thursday night. And I was gonna say something else, I forgot. Okay, never mind. Brain fog. 

                             Oh, that’s actually — okay, what I was gonna say, so in the last 17 years, the best I’ve ever felt that entire time was when I was pregnant. And so, when you’re pregnant, sometimes some people, not everyone, with autoimmune diseases that goes into remission. But the thing that stood out for me was not only did my physical symptoms go into remission, I felt more energy than I had felt in a long time. And then I realized, wait, so if I’ve been on Methotrexate this whole time, at a certain point, you just accommodate to it. And you’re like, this is what my — this is what I feel like, like, this is who I am. This is my body, right?

So, I actually since I haven’t been off of it, other than pregnancy, I actually don’t know how much fatigue I have, do you know what I mean? I mean, it may be causing and not necessarily a distinct hangover the next day, but it may be just causing this baseline level of fatigue that — because I mean, pregnancy is notorious for causing fatigue. And I was like, woohoo! Party time. Like, I flew to China to visit my husband, I went to Japan, we went travelling. We like walked all around the Great Wall; I was going swing dancing. I was like, I’ve never felt better. 

So, it is — there is a certain point, like I know sometimes my doctor has been like, what do you think this is happening, or is this —? And I’m like, I literally don’t ever completely know unless I go off of something, whether what’s causing what unless it’s like severe.

Like, when I did start a new medication for anxiety. And I had, unfortunately, it’s a very effective medication and it works really well for my anxiety. But they’re kind of — SSRIs are kind of notorious for having that two to three weeks like, ugh, it’s hard to get — your brain is like spasming like, and you’re like, whoa, I feel weird. Like, this is very distinct. If it’s not like, a severe side effect you get to this point where it’s just hard to know. Yeah, trial and error, like what is causing what. So, anyway, for whatever that’s worth, there was a point in there somewhere.

  Aashi:        Yeah, like everything, I think trial and error is the key to finding what works for you because what works for me is not going to necessarily work for Cheryl or Paulina, or anybody else on here. And I’m sure we can all say and relate like, yes, I have that same symptom and everything, but just being able to keep going and just keep trying new things. Paulina, did you want to go ahead with your comment and tip?

1:22:20 Paulina: Yeah, I’d love to, um, actually just a second and sort of add a little bit more on acceptance and fear. One thing that has been helping me — but of course, we have our good days and we have our bad days — what’s been helping me a lot mentally is trying to stay in the moment and accepting what is now. I am someone who — or, I used to be, I try to not go on that route anymore — but I used to be someone who would just think a year ahead, or a month ahead, or 5 years ahead, or 20 years ahead, and I’m like, wait, this is gonna get so much worse. This is just, I’m just going to continue and this is going to get this, and that, I’m not going to be able to do this. I’m a dancer as well. So, I’m like, well, I’m not going to be able to dance at one point in my life, and what am I going to do? And I continuously found myself going into a spiral. And I mean, stress and all of this, it really doesn’t help us.

And something that I tried to do on a regular basis is to simply stay in the moment and accept that today at 9 o’clock is how I’m feeling, and today at 6 o’clock is how I’m feeling, and that’s how it is. Because every single hour could be completely different. And just because I woke up this way doesn’t mean I’ll go to sleep feeling that way. So, I mean, it’s hard. I’m not saying this is like, hey, you can do that. It’s continuous work every single day to just try to like look and accept that this is how I feel in this moment. And it’s fine to say ‘No’ to someone that I made friends with for tomorrow — to plan to meet with for tomorrow, when actually I wake up feeling shitty. I’m like, “Well, sorry. I cannot go.” Yesterday, I felt amazing. But today I don’t. And that’s fine. 

                             And I feel that finding that balance and finding that acceptance to be okay with how we’re feeling in that specific moment has been such a massive changer for me. Because, I mean, there truly is no point looking at the future, even if it’s a future in one hour or two hours ahead, because we can’t change it, what’s going to happen. We can’t influence it as such, like, properly, I mean. We can sort of keep our spoons for tomorrow from today, but we still have to just accept what’s coming. And like, what’s happening in that moment that we’re in right now.

And for something that maybe like helps me get into that is meditation, but guided meditation, because if you try to sit quietly, your mind is just going to go. Like, it’s gonna do its thing. You’ll never be able to not focus on what’s on your mind. Guided meditation or moving meditation. I am a dancer myself, so putting music on and doing dancing meditation, it’s like, it transforms me. And my mind is elsewhere in that moment. And so, that’s something that helps.

And also, most of you probably know, but I’m into yoga a lot and I have been for a very long time. Now being actually, okay, a few moments from certifying. I can also say that getting yourself into a point of finding what like, occupying your mind with balancing your body, for example, yoga poses where you have to focus and balance yourself brings you into the moment. Your mind will not think about what you have to do tomorrow, because you’re about to lift your foot up and you might fall if you don’t focus on keeping balanced.

So, actually, that’s been like such a huge help for me as well. On the days that I’m feeling like my mind is like thinking that I have made these plans in a week’s time and they’re really important for me, and I want to be there, but oh, my gosh, how will I feel, then I just do a very challenging balancing yoga workout or yoga session to bring my mind back into the moment and sort of help myself accept that that’s where I am, and that’s what I need to focus on now. And whatever is going to come, I will deal with that when it’s there when the moment comes, then go through the same process of just accepting, analyzing what you can and can’t do, and simply going with it.

1:27:08 Aashi:   Yes, thank you, Paulina. Yes, and that’s so important. Just seeing where you are in the moment and like, being okay with it, I think is so important. And I love that you found something that you’re so passionate about, and it can like help you manage your day-to-day symptoms and like support other people in finding that same, I think it’s awesome. For me, balance is something I treasure but can never find. So, I’m always trying to find ways to get that. Is anyone else — yeah, anybody else that would like to say some stuff?

1:27:50 Paulina: I’d like to go and then say something. For everyone out there, for anyone that comes across this video recording now or anything, there’s a community now, and you don’t have to be alone. Like, you can come to any of us or to any other person, Google, or go on Instagram, check for a hashtag related to spoonies, or chronic pain, or arthritis, or any condition that you have. And you’ll be able to connect with so many people and just talk because sometimes all that we need is to just get it out of our chest because no one else in our family understands us fully. And we just need to get it out of our chest.

We don’t even need advice. We don’t even need them to say anything. We just need to say it to someone who we know understands because they’re going through something like that, or something similar. So, you’re never alone. You have a huge community now that you can join and talk to. So, please just approach people and say that you want to talk.

1:29:00 Aashi:   Yay. Thank you. Yes, it’s so true. We’re all very talkative I feel, and we’re all super nice. I just, I never knew people could be this nice. And then I fell into this community. So, yay. All right. Anybody else? 

1:29:17 Jo:      Yeah, I’d like to say something about, okay. So, just like a general piece of advice for everyone that is new to this and scared. We probably all were at the beginning of a diagnosis, and you just have to make sure that you make a decision about where you want to go treatment wise. You know, make it for yourself. And yeah, it’s completely fine to listen to other people and other people’s stories. But at the end of the day, you have to make up your own opinion and make sure that you know what you’re about to do is the best for you. Because, you know, you might have to do this I don’t know for how long, so it might as well be confident in what you’re doing. And, you know, go all in based on your decision.

    Aashi:           Yes, go all in. I love that. Thank you.

1:30:11  Cheryl: Okay, I am gonna say one more. I swear, I think I have ADD — anyways, my psychiatrist doesn’t think I do. I’m like, eh.

So, I actually, I want to full circle on this whole idea of natural medicine versus Western. You don’t have to choose one versus the other. It’s often positioned as you have to either go all in on the natural, or the Western meds are scary, or you have to go all in on the Western and like, who cares about diet. You can do both, you know.

And I know a lot of people who yeah, they start, let’s say, okay, I want to be as aggressive with this as possible because I am aware of some data that early aggressive treatment is the best for long-term maybe joint damage prevention.

But then you say, okay, I’m gonna start like 25 milligrams Methotrexate, and then I’m going to do all this amazing lifestyle, diet, exercise. And then I’m, you know, meditation, stress management, and then I’m going to see, oh, if I’m feeling amazing at 20 milligrams of Methotrexate with all my lifestyle things, what if we can bump down the Methotrexate to 20 milligrams, 15. And I’ve, again, been exposed to people who’ve done that too. So, it’s like having a cake and eat it too.

Aashi:               No, both, I think, changes are nice.

1:31:10  Ananthi: Slight bit of advice for the newbies. As a newbie, if you’re starting up a new profile and you’re beginning your journey, you will find that there are certain people that slide in your DM’s that claim that they’ve got the world’s most amazing cure. And take it with a pinch of salt. I’ve had my polite days; I’ve had my very impolite days. And I would listen to the specialists and go with what they’re saying. Yes, Cheryl’s saying a truckload of salt. Yes. I would prefer to put the salt on my food. You know? And, yeah, it’s full of crap, a lot of them.  

1:31:50 Aashi:   I agree. And a lot of these things, they are not supposed to work with our medication. And I know some of the products that have been like, sent — I know some of the screenshots I’ve seen. And I recognize it because I do use that company for some of my non-toxic things. And it makes me so angry when people suggest things without like looking at people’s history or like what medications they’re on, because they kept suggesting me to do like this hormone therapy, but with my birth control, like, I can’t take that. And obviously, like I had to do my own research and then be like, “No, thanks, dude. Like, bye.” So, yes, so much.

Like, so many people out there trying to like pass off cures, and I have to keep telling my family as well. Like, no, that’s not a cure. That’s just you wasting your money. Like, there’s no cure. God can’t like make this go away. And if you are spiritual, for me, what I told my mom was to pray for strength and courage to get through this. So, if you are religious and your family’s religious, praying for a cure may not be realistic, but you can pray for strength and courage and that might actually give you more hope.

So, maybe that’s my last piece of advice. Just if your family is insisting on praying on you, let them and have them pray for things like courage and strength and acceptance. That’s something I asked my mom to personally pray for. And it’s helped, at least in a placebo way, it’s helped me.

1:33:22 Ali:     Yeah, I love that. But, as we were saying, like, we will get a lot of DM’s of people who are medicine shaming us, which as you know, if you follow me, I get a ton. And of course, you can block them, or you can try to explain to them, but what’s harder is our family members and our significant others that are not on board. And so, mine wasn’t. Mine wasn’t, so that’s why I created my Instagram page. So, bringing awareness to them.

So, now that my friends and family watch me and they see it every day. They’re like, “Oh, wow, like that’s what you’re going through.” So, giving your family and friends the resources, like if they want to check out our pages, or if they want to follow along on our journeys, and educating them. Really sit down with them and let them know how they’re making you feel is super important. 

   Aashi:        Yeah. 

1:34:00  Paulina: I agree with all of that. And one last sentence, because we just keep going over. We talk about like nutrition, we talk about exercise, talk about these little things that could might, maybe help. No cure, no diet, like no claims or anything. However, what I would want to say is to not be afraid to try something new that might help. It might just help mentally, might be a placebo, it might just be with your stress or it might be with your pain management. But if it’s not actually harming you, then don’t be afraid to try it out. Because each one of us is so, so different that what’s working for me might not work for you. But it could also work for you. Just give it a go and test it out and see how it feels.

1:35:00 Kristen: Yeah, I think it’s important to note, just one last thing as we wrap this all up, you’re in charge of your journey. This is your journey, no one else’s. If you want to try yoga, try yoga. If you don’t want to try yoga, don’t freaking try yoga. It is up to you, because this is your journey and no one else’s. And don’t feel bad because you don’t want to try something or because you do want to try something. This is your life and you’re in charge.

1:35:23 Aashi:   Yes. And being sick, everyone’s always telling us what to do and what not to do. Man, it just makes me so crazy. So, yes, try whatever you want. Don’t try whatever you want, lay in bed all day, go running all day. It really doesn’t matter because at the end of the day, if you’re not happy living the life you have, then it’s just, oh, my gosh.

My favorite ones are the herpes comments like, someone helped me cure my herpes. And I’m like, how did they do that? That’s just like, so crazy, you guys. But I’m so glad we’re like not the only ones getting all these messages. I mean, they’re happening to everybody. 

Cheryl:             I mean, I think everyone is — the way I feel about it is the way I feel about religion. I’m like, everyone is welcome to give me their pitch once. And then if I tell you respectfully that like, I’ve listened to you. Like, I will listen to you, because I believe that — if I believe that everyone was going to hell if they didn’t take an action, I would want, I would be like, it’s an act of kindness to try to save people from going to hell, right? But if I tell you like, I have different beliefs and I don’t, we’re not going to get anywhere with this conversation, but I will respectfully listen to you.

And then, the second like, after that first conversation I’m like, and then I’m like, okay, I’ve listened to you. And then, you know, we can stop the conversation. I’m bad at stopping conversations. You might be surprised at that. But I’m like, I’ll listen to you once, you know and then — then bye. Bye-bye. Ain’t nobody got time for that.

Aashi:               I agree. And this is so awesome. You guys. Thank you. 

Cheryl:             We are so wise, everyone. No, seriously, this is amazing. Thank you, guys.

Aashi:               Thank you so much everyone for joining. I hope you’ve gotten a little bit more clarity going through your journey.

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