My Spoonie Sisters

Empowerment Through Knowledge: Your Guide to Managing Rheumatoid Arthritis

November 13, 2023 Gracefully Jen Season 3 Episode 11
My Spoonie Sisters
Empowerment Through Knowledge: Your Guide to Managing Rheumatoid Arthritis
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Are you aware of how much power you hold in managing your Rheumatoid Arthritis? Understanding your condition, being knowledgeable about treatment options, and maintaining a robust support system can significantly impact your health journey. In our conversation today, we share our personal experiences and mention Stefanie, the Rheumatoid Arthritis Coach, and Dani from Make It Count for Dani. These wonderful individuals have helped us understand our condition better and have shown us the importance of connection and emotional support in managing Rheumatoid arthritis.

Living with a chronic illness is not easy, but prioritizing self-care can help. We'll explore techniques to adapt your movements, discuss the impact of stress on your body, and share flare-friendly exercises. We will also introduce you to the Serendipity app, a tool that offers recipes, a chat community, and more. Did you know affirmations could aid in self-care? We'll discuss the impressive benefits of stacking affirmations and how you can incorporate this into your daily routine. 

Having an open line of communication with your healthcare provider is vital to managing Rheumatoid Arthritis effectively. We'll shed light on how to express your needs, ask the right questions, and prioritize your care. Moreover, we delve into the importance of using online charts and share tips on how to communicate effectively with your healthcare provider. Lastly, we provide five essential tips to manage Rheumatoid Arthritis and stress, drawing from our personal experiences and what has worked well for us. Join us on this enlightening journey and empower yourself to take charge of your health.

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Jen:

Hi, my Spoonie Sisters. Welcome to another episode of my Spoonie Sisters with me, gracefully, Jen and Linnea. So we are here to provide you with support, information, inspiration for living your best life despite the challenges of chronic illness. How are you today, Linnea?

Linnea:

You're good. I am a little slower than I have been, but that's okay.

Jen:

I think we both are. Yeah, but I think that's why we like to chat so much. Yes, we pick each other up Absolutely Every chance we can. I always said every day, but no, every chance we can't.

Linnea:

Yes, yes, it's every chance.

Jen:

So today we have a particularly important topic to discuss managing the stress that often accompanies a rheumatoid arthritis. So living with this autoimmune condition can be challenging. So you're late, yeah, Both physically and mentally, and we understand the importance of addressing the stress that comes with it. So in today's episode we're going to share five valuable tips to help you better handle rheumatoid arthritis and stress. Oh we need that.

Linnea:

Yeah, I know.

Jen:

All right. So let's dive into tip number one. It's educate yourself. So our first tip is to empower yourself through knowledge. Understanding your condition, the treatment options and what to expect can greatly reduce the stress that often comes with the unknown. So take one time, take one time. Take the time to educate yourself about rheumatoid arthritis, what its symptoms are and the available treatments, which treatments are constantly changing, right, exactly. So you want to do this by being informed, so you'll feel more in control of your health journey. So do you feel like you've done this? Have you educated yourself, linnea?

Linnea:

Yes, when I was diagnosed there wasn't as much internet. There wasn't the social media, but magazines, books, anything I could get a hold of to try and understand what the doctor just told me was very beneficial to myself.

Jen:

Yeah, absolutely, and I think for me in the beginning. I just Googled. Yeah, and we always call it Dr Google.

Linnea:

Yes, yeah.

Jen:

But really that's what I felt like I had, and now I just feel I feel so much more empowered because we have so many more people that we know we can talk to and so many more resources. You know, like we have Stephanie, the rheumatoid arthritis coach. Exactly, yeah.

Linnea:

And it's more people getting out there.

Jen:

Exactly, and so the more of that that we have in our community the better. But some people don't even know about these resources.

Linnea:

No.

Jen:

And so it's so important that we get the information out there and let people know that these resources are available to them.

Linnea:

Yes, I absolutely agree, because there was a time there wasn't enough resources and there's people that don't know how to find it and I think they have, like social media, which is where we come in, because we can share those resources and they're going oh, I can find out more, you know. So I think it's great that we personally share those types of things.

Jen:

I think it's incredibly important. I could not agree with you more, and so I mentioned Stephanie, the rheumatoid arthritis coach. Do you have another one that you can think of?

Linnea:

Like just a coach, not off the top of my hand.

Jen:

You can just a person that you follow and look up to.

Linnea:

Well, besides you, I make account. I love her daily Daily doses. I was I had a brain fog there. What it was called. Her daily doses are so inform, so much information, but she does it in a way that you can understand it and you're going. You have. I've had so many aha moments from her daily doses, Like, oh, that makes sense, Makes more sense now why XYZ is happening. So I would say she's one of my top ones that I watch.

Jen:

I definitely agree with you and I will make sure I link both of them in this. Yes, do yeah, don't, let me forget. But so that's Stephanie, the rheumatoid arthritis coach, and Danny from Make it Count for Danny, and don't forget she's got those amazing daily dose of Danny. Oh, yes, check them out. All right. So tip two would be to build a support system. Rheumatoid arthritis can be isolating and the emotional toll it can take can be very overwhelming. So that's why our second tip is to build a strong support system. Connect with friends and family who who are understanding and compassionate. Consider joining online or in person support groups where you can share experiences and strategies for managing stress. You don't have to go through this journey alone. Okay, so how do you feel like you've done with tip number two building a support system?

Linnea:

You know, at first I didn't have that. I didn't realize how important it was until I got it Like, okay, having support of others that have the same disease and maybe our diseases are hitting us differently and hits different joints, but we understand the process, we're still going through the same thing, we're still fighting, and having that makes it so much easier for me to accept my diagnosis is having that support system.

Jen:

So have you been in any kind of support groups at all?

Linnea:

You know, I was in one. It was an art, I can't even think of it now on Facebook page. I'm in one over there and it got very big and it started losing. You know. You know how it is, but I still look at their stuff, I still see, you know. But that helped me understand my disease better and it also gave me people that I could vent to and say why is this happening. And they tell you you're okay, you're not alone, you're not doing this by yourself. And the Spoonie sisters on Instagram, my Spoonie sisters on the Instagram. I love that group.

Jen:

And I think I'm in the same one on Facebook that you're in, and exactly when it starts to get into the thousands, it's very overwhelming, and so the ones that I have been in is I used to do one with. There's a podcast called my Immune System Hates Me. She no longer is taking new members. People. I can't even think of how I'm trying to word this. She's not doing interviews anymore, but her podcast is still up there and so I do recommend people listen to it because it's really good. And I don't know are you on that podcast? Did she interview you?

Linnea:

I don't think so.

Jen:

Okay, I know I did and a couple other people did, but-.

Linnea:

What was it again? I'm gonna write that down.

Jen:

My immune system hates me and that's with Chelsea out of me. I think I do have that one on my podcast, yeah, and it's great listen and there's all kinds of I mean it's all over the place for different kinds of topics and people that she interviewed. It it's awesome, and I love hearing stories completely not related to my own, because it's fascinating to me. Yeah, and I don't mean that in a weird second twist, no, no, I don't think I'm gonna thrive on people's pain, but it makes me better understand them and I love that.

Linnea:

Yes, and I agree, the more we learn about the other diseases, we can sympathize a little, better we can understand. We can tell them we get it. We might not understand it all, but we understand, if that makes sense.

Jen:

Exactly, and it was sad because she was retiring from the podcast, because she was getting into dancing again and going back to further her education. And she's also a she helps teach like kids in a kids program and I mean she just busy life. She has a big, a big, amazing life in New York City that I am so incredibly jealous of because that's amazing. I didn't want it to end there and that's why I started the podcast was to keep it going and I'm so incredibly grateful to her and yeah, but we had a Thursday group that met and so when she was done with the podcast, she ended the support group too, and I'm in one with Cheryl Crow from RA Life Hacks.

Linnea:

I mean, I'm not a live on Hacks. Yeah, you know what I mean. She does RA Life Hacks.

Jen:

She does, she does. But RA Life Hacks is a really separate person. But yeah, so Cheryl Crow, not the famous singer, but the famous one in RA.

Linnea:

She's famous in our world. I think, Like I think I would probably get very nervous if I were to run into her because my daughter met her. I know and I was a little jealous.

Jen:

I was a lot jealous. And my very, very shy daughter ran up and gave her a hug and got a picture with her.

Linnea:

So okay, We'll have to live through your daughter.

Jen:

Live by courtesy for her and then. So those are the two that I've done and I'm still in the one with Cheryl right now. But on top of that I think you've came to it before my friend Megan we do the mindset support group, yes, and it's really just kind of helping us get out of that negativity that we can get stuck in so easily. I gotta do it.

Linnea:

That's why we started it. Yeah, I got to get on there with you guys. I mean, this week I wasn't feeling good, but there's other weeks that I've wanted to, but my anxiety's gotten the best of me and it's easy to do.

Jen:

It's easy to do and you're not alone. I want you to remember that, because I have severe anxiety and I don't think people realize that, and so when I'm interviewing new guests, oh my gosh, yeah, I have like sweating bullets.

Linnea:

I get nervous doing it when it's just us Like. I get a little anxious like that.

Jen:

Well, we have a camera on and it makes it nervous, like if it was just. We just need to pretend a space time. Yeah, yes, okay, so we could easily stay on tip two forever? I'm sure, yes, but support group.

Linnea:

they need that so.

Jen:

Absolutely, If you're new into this world, find a support group and I'm going to tell you, I've talked to many people that have said they have tried multiple support groups because sometimes you find out one is way too big.

Linnea:

You've got to find the right one.

Jen:

For anyone that wants to join our mindset support group. I mean, really, we at most have six people. It varies. Some people can't come every single month, so it just varies, which I don't mind. The fact that it's a small group, but at the same time I'm welcome to more people. I think it's good for you and I to get out of our anxiety pocket.

Linnea:

Yes, I'm trying. I'm trying.

Jen:

We're at work in progress, yes, okay. So tip number three practice stress reduction techniques. So tip number three focuses on those practical ways to manage stress. Incorporate stress reduction techniques into your daily routine. Techniques like deep breathing, meditation, yoga and mindfulness can help calm your mind and relax your body, so stress reduction can also have a positive impact on your physical symptoms, making it an essential part of managing rheumatoid arthritis. All right, do you feel like you're going to doing tip number three Sometimes Depends on the day, right?

Linnea:

Yep, and you know what, though? What's so bad about that is I know how much this stuff helps. Like I am very much, I do do the deep breathing a lot. My trainer, liz, taught me how, and sometimes I'll go back to those breathing videos she has sent me just to refresh and make sure I'm doing it. That is a huge help to me. You know, I'm sure you've had the. You know, if you just do yoga, you'll help and you'll be feel better. You know We've all gotten that If you have RA or any autoimmune, people are going to tell you you need to do yoga. But I will tell you yoga has been a very big stress reliever for myself and being in pain I haven't been able to do it as much, but that is truly relaxing for me, a relaxing exercise, but it gets my joints moving too.

Jen:

Well and that's the thing that I think people need to understand is, first of all, be careful when you're giving people advice and don't say things like have you tried yoga? Yes, or I had a friend tell me to juice with her.

Linnea:

I mean yeah, yeah. Drink apple cider vinegar. Take a scoop of that, or drink a shot of that every day. You're going to feel better.

Jen:

And I think I know I think some of these things can kind of help some of the symptoms, but they are not a cure, and I think sometimes when people give this advice, they make it sound like that it's this all knowing cure and it's not. And so I love yoga also, but I can't always do it and it's definitely I see how I'm doing. But lately I've noticed that if I do a little bit of yoga in the morning or the evening, it helps loosen me up after I've gotten up in the morning and it helps loosen me up again before I go, lay down Exactly. And it's also finding out how to adapt and change the movements and make them work for us, because you got to fine tune it. Sometimes you don't want to, you don't want to hurt yourself and if, actually if anyone out there is hypermobile, you can easily hurt yourself if you're hypermobile and trying to do yoga. My daughter is hypermobile, yeah, and, and so you know I took her to a yoga class with me once before she found out she was hypermobile and we couldn't figure out why she was hurting so bad. Well, duh.

Linnea:

Yeah, because of the positions you. I did hot yoga. I loved yoga, but it really there were some movements there that I paid for later. Yeah, but yeah, I it's. It's just so crazy how people forget that we have an autoimmune disease and that these things are not going to heal us.

Jen:

No, they're not. They might help symptoms. Like I said, they might help symptoms depending on your whole background. I mean, we need to look at everyone as a whole, Just like we want a doctor to look at everyone as a whole. Be careful when you're giving advice to people, because you're not a professional, you're not a doctor and also you might not know their entire story Exactly.

Linnea:

But I do think we need to get out there that you've got to prioritize self-care having a chronic illness, because it really does. Stress is a big trigger for a lot of us because that affects your whole body and by doing some of these things it will calm your disease down a little bit so you can actually live.

Jen:

And as you get to know your body better, because, ironically, when you get diagnosed with something like this, you get to know your body better, and as you get to know it better, you get to know what triggers are. So you might have a healthy diet, but maybe there's a particular food that you eat that causes you to get more inflamed, or maybe you're allergic to it or whatever it is, and so you've got to be careful about that. Or maybe you're hypermobile, so you can't do yoga and you've got to find something else. Or you're hypermobile and you still want to do yoga, but maybe you're doing it a little more gently and not stretching as far, or you completely do not do some movements Is the Serendipity app.

Linnea:

don't they have some modification of exercises on there?

Jen:

I thought there was some city.

Linnea:

So for people that can't like stand a lot, I feel like there's some sitting exercises in there for people, so I just want to put that out there. The Serendipity app is amazing and worth it, and that is one thing I found on there is their exercises really help.

Jen:

Yes, and since you mentioned them, I will say this is not an ad.

Linnea:

We are not forcing you to say that, no, no, no, no, I'm just love this app, but we both love it when you open it up.

Jen:

What I love about it is you can have your daily affirmation and it even pops up with a notification on my phone for my daily affirmation. What I personally love to do is all week long. I will leave that notification so I have my affirmation stacking up. Oh, what a good idea. Yeah, and so then when you open the app, you go into it and you see the affirmation again. You see, I keep wanting to call it menu recipes, recipes, a whole section for recipes. They have a section for like a community chat type of thing where you can bring up topics and questions that you want to ask people or you can jump on with what other people have said. They have some mindfulness stuff. My financial leak she's amazing. I love listening to her.

Linnea:

Yes, I love it. I feel like the app goes along with this tip Like really well.

Jen:

Yes 100% and it's, I think, for me. Personally, I find it super helpful and affordable. It's not overly pricey. Exactly, I do have a coupon code that they gave to us. It is, I'm pretty sure it's Spoonie Sister or Spoonie Sister One it depends on. So there's two ways of signing up. You can sign up for a monthly or a yearly, and so one code works for monthly, one code works for yearly I think it's Spoonie Sister for monthly and Spoonie Sister One for yearly, and so I think it's like $7.99 a month if you do the monthly with the discount, or maybe no, maybe that's before the discount, I don't know.

Linnea:

But it's worth it, like it's one of those apps that I think it's great to have and it goes perfect with our tips.

Jen:

Yeah, it's got videos for working out and flare friendly. That's what I love about it. One of our friends, live, move to live. She does flare friendly exercises, which are amazing.

Linnea:

That might be the ones I was thinking of.

Jen:

Probably. And then Megan does all the flare friendly too. I know there's people that do like exercises from a seated position too. Yes, I mean there's, oh my gosh. Yeah, I can go on.

Linnea:

There's time for everybody.

Jen:

Yeah, so I mean, you guys get it by now. We love our serendipity, yeah.

Linnea:

But it's the self care. Or the stress release Like it's got a lot of. It really goes along with the tips, the last two tips we've talked about.

Jen:

It is and the woman that created it. She is amazing. She is also a fellow Spoonie Sister and that's why she created it, so I think that's amazing. Yes, let's see. Was that already tip four? Wow.

Linnea:

Did we kind of just go into tip four? I think we Maybe not, oh, maybe not. You know what we did. I kind of brought it up for the stress reduction and it kind of is goes along with our next tip.

Jen:

Yes, they definitely do go well together. Okay, so here we are. Tip four we already kind of talked about it, but that's okay. Tip four is prior Blah, blah, blah. Oh really, that's the tip. Yeah, it's blah, blah, blah. Prioritize self care. So self care is not a luxury, it is a necessity. Say that again with me Self care is a necessity, people especially when living with a chronic illness like rheumatoid arthritis or any other chronic illness. So tip four is all about prioritizing your self care. Make sure to get enough rest, maintain a healthy diet and engage in activities that bring you joy. By taking care of your physical and emotional wellbeing, you'll be better equipped to handle the challenges that come your way, and I could not agree with that anymore.

Linnea:

I'm right there with you Like it's so important and I know there are people because I know I've been there where you're going that is so selfish of me to take that time Like I should be doing X, y, z for somebody you know. But you have to learn that it's okay to give yourself that self-care and make it a necessity in your life because it truly is a benefit to you and your disease. When you do those self-care Soak in your feet and epsom salt, having your daughter do your nails. You know, go for a walk in nature, just do something to take care of you in self-care and then-.

Jen:

Absolutely, absolutely. And I love the fact that you're sharing examples, because I think everyone needs to remember that self-care isn't important, but we always do look at it like a luxury. But there's so many options of self-care that are just taking care of yourself and, at the end of the day, even if you're like say, you're a mom, okay, yes, you've got a crazy busy life, maybe you even work full-time too crazy busy life, but you have to take care of yourself. So that might mean an extra five minutes in the shower. That might mean an evening bath soak. My sister-in-law I think it's amazing she takes a bath every single night once their son goes down to bed, and I think that's a wonderful way I'm so glad she does that.

Linnea:

It's a great way to pamper yourself.

Jen:

Yes, I think sometimes she even takes champagne in there. I mean, she knows how to do it, well, go for it. Girl Handles the whole shebang chocolate, oh, okay.

Linnea:

I want that spa. I want to go to that spa.

Jen:

It's just a regular bathtub but I know but-. You might as well go bigger, go home. Yeah, I love it, but it could be anything it could be yeah, okay, it's simple. Here's my example, today I had a lot going on today. I was interviewed for another podcast today of a fellow friend meeting with you computer work, all the things. But I finally looked at the clock at one point and I was like, wow, have I even walked around at all today? I've been sitting at my computer most of the day. This is not good, too good, I did eat. I did eat. I finally was like you know what, I'm going to pause when I'm doing and I'm going to get up and I'm going to go for a walk around the block. And then I got out there and I'm like, no, I don't do more than a block, I need more than that. So I walked down, partly down towards the other side of my neighborhood and walked past the park and around, and then back down on the road behind my house and did a loop. So I walked for 15 minutes and I think I needed that. I needed to get up and stretch because I was starting to get stiff and sore, and so prioritizing yourself can look like anything you just need to figure out what you need and figure out how to incorporate it into your schedule.

Linnea:

Yeah, exactly, you can have as little as five minutes. Yeah, I wanted it on. I wanted it on the action.

Jen:

Yeah.

Linnea:

But even just as little as five minutes a day, just to take a deep breath and just center yourself, because you can't run on fumes.

Jen:

Exactly Five minutes to refill your pill case and take your ads and maybe have some avocado toast and some tea, whatever it is you need and whatever fancies you. Yes, exactly, exactly. All right, let's move on to tip number five Communicate with your health care team. Whoo that was a biggie? Yes, it is so. Tip number five emphasizes the importance to open up, of open sorry, of open and honest communication with your health care team. Your medical professionals are there to support you, so don't hesitate to discuss your stress and your concerns with them. They can help adjust your treatment plan or recommend additional resources to better manage your rheumatoid arthritis and stress. So I don't know about you, but tip number five is pretty big, yeah, and here's the thing.

Linnea:

Yeah.

Jen:

With tip number five. Most of us now, I think, have online charts available to us by now. Yes, yes, and I think that is extremely important and so it's worth utilizing. If, for some reason, maybe, you were put on a biologic last month and they said, ok, let me know how you're feeling like, if you're getting any improvement. I mean, typically some of these might not show improvement for three months or so, but maybe they did ask, or maybe it has already been three months, and so if, for some reason, you're feeling like it's not working, or maybe you're just having a new pain I don't know whatever it is but you can get in your chart and message them.

Linnea:

It's super important because, yes, I agree and it's super important to be comfortable with your health care providers. You need to be able to be open and honest with them. You can't have a doctor that you don't feel like you can really tell them everything, because I've had doctors like that where and also maybe it's sometimes I just felt like I was complaining too much. But you have to be honest. Every symptom, every pain, every ache. You have to share that because that gives them the information to help you. And you have to find doctors that you trust. That's a big thing.

Jen:

It is a big thing. And here's the thing If you have a good doctor, they truly want to know this information because they're trying to find the right treatment plan for you.

Linnea:

If you don't share everything, they can't find it there are going to be a lot of misses.

Jen:

No, a few episodes back. I don't know if you caught this one, but there's a fellow Spudy sister that she not only has her metoarthritis but she is actually a you know, I think, if I remember correctly, I think she might have mentioned that she was kind of in in like a delusional moment, that something was even wrong with her.

Linnea:

Yep.

Jen:

And what I think is is a good thing is that she finally went to someone in her practice and said, okay, something's off, yeah, and and so I, you know, I asked her some important questions and I said, okay, how do people know when the medicine is not working and when to move on to the next one? And so if you guys didn't hear that episode, I definitely encourage you to hear it, yeah.

Linnea:

I guess I've missed that one.

Jen:

I will definitely have to go listen it's some really helpful information and I and it's not just for women to arthritis people, it's for anybody on their medications, you know their goal is to get you in medical remission to find the right combination for you and they have a way of going through these different medications to get you there, you know. And then you have a time limit that they have and if, if they're seeing like 5% improvement, that's not good enough. They want better.

Linnea:

They want yeah, and they'll increase you to see if it will improve.

Jen:

And honestly talking to her made everything from my last 10 years make more sense Because my rheumatologist when she added biologics for me she started me on a Rensia and I mean there was a little bit of improvement.

Linnea:

But not a lot.

Jen:

And, and so after I don't know four or six months or so, she was like you know. I think we can do better and I didn't. I never asked questions before. I asked all the questions now, but before I was just like okay, that's what you want me on? Okay, okay, and that's what I always did, and so it was nice to hear, like, what they usually and typically look for and want.

Linnea:

I, yeah, I actually I, looking back, I think I was in medical remission for a little bit, but then the medicine stopped working, which happens, oh gosh. But, fine, good doctors. You have to have good doctors, Absolutely Well, and you think that needs to be a topic all by itself and definitely.

Jen:

Definitely, and if any of you are familiar with this app and they're also on Instagram I don't know about Facebook or anything, but I know they're on Instagram. They pronounce it help, but it's spelled like it's H-E-A-L-P, and you can actually go in there to to chat with people and get to know people that have similar struggles as you do health wise. But there's also a section in there where you can recommend good doctors, which is amazing. Yes, and so the whole point of that is to help people not go through some of the junk that some people have gone through, and to help you find somebody that is actually going to be a great doctor and really listen to you and take you seriously. It's so important. So one thing I was going to bring up is I was in medical remission as well. Yeah, but now I understand better why I was taken off of it. Yes, because at the time I was like whatever my white blood count, I guess, kept dropping and she was heavily concerned. Well, I kept getting sick constantly. It was like if someone was to breathe next to me somehow. I caught an illness.

Linnea:

Yup, I was like that Mine. I had a. I was starting to get my body was like rejecting it, like allergic, like I had severe blood pressure issues with it, and it made me mad because I was finally feeling good.

Jen:

That's scary, it'd go every day. But I still have hope that you know that you're going to find that and get there.

Linnea:

We'll get there.

Jen:

So there you have it Five tips to help you handle rheumatoid arthritis and stress. Remember you are not alone in this journey and there are resources and support available to you. We hope that these tips will make a positive difference in your life, and I will hopefully remember to add every single one of these things that we talked about to the show notes. Thank you for tuning in to my Spoony Sisters. If you found this episode helpful, please consider sharing it with someone who might benefit from the information. Stay strong, stay resilient, fighting against your challenges, and until next time, don't forget your spin.

Managing Stress With Rheumatoid Arthritis
Prioritizing Self-Care for Chronic Illness
The Importance of Self-Care and Communication
Managing Rheumatoid Arthritis and Medication Tips