RA Rheum Champion Tells All

Imagine enduring years of unexplained fatigue, tendonitis, and carpal tunnel, only to find out these symptoms were just the tip of the iceberg. Join us as Stasha shares her enlightening journey to a rheumatoid arthritis diagnosis, revealing the red flags she overlooked and how a rheumatologist finally brought clarity to her persistent health issues. Discover her tips for managing RA, from biologics and physical therapy to lifestyle changes like staying hydrated and incorporating natural anti-inflammatories such as green tea, peppermint, and cannabis. It's a story of self-advocacy and finding the right medical support to lead a healthier life.

In another chapter, we recount our recent meetup in Colorado, where self-advocacy and effective travel management took center stage. As part of the Impact Action Council and Rheum Champion Stasha was excited to attend the Rheumatology Research Foundation Investigators meeting. Stasha and I discuss the significance of connecting with caring specialists and the invaluable experiences gained at conferences filled with intelligent and compassionate professionals. You'll hear about the joy of creating and sharing content that resonates with our health journeys. Finally, we emphasize the importance of embracing small victories, like managing household tasks, to improve overall well-being. Join us as we celebrate incremental progress and self-compassion, and learn how to connect with Stasha for ongoing support and insights.

http://www.tenaciousme.org/
You can find Stasha on Facebook and Instagram @tenaciousinme

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:00 Living With Rheumatoid Arthritis
• 14:30 Navigating Healthcare and Support Resources
• 27:00 Embracing Small Victories in Life

Transcript

Jen: 0:09

Well, hi, my Spoonie sisters, it's your host, grace Splee-Jen, and I am so excited to have Stasha here with me. I was so thrilled to meet her back in May in person and to get into all kinds of fun shenanigans together at the Rheumatology Research Foundation investigators meeting. Try to say that one 10 times fast. Hi Stasha, how are you? And I'm good. How are you? I'm doing well, I'm so excited to have you here. I'm good. How are you? I'm doing well, I'm so excited to have you here.

Stasha: 0:34

I'm excited to be here.

Jen: 0:35

So, if you don't mind, can you share a little bit of your diagnosis story with us and how it impacted your life?

Stasha: 0:41

Yeah, I can definitely do that.

Stasha: 0:43

I'll give you the abridged version because it's a really, really long story.

Stasha: 0:53

But the long story short is it took a lot of years to figure out what was going on with me. I kind of my symptoms came and went for a really long time, from the time of 19 years until after I had my second child in my 30s, so it was just kind of slow, rolling, bouncing around my body. I had a lot of different tendonitis and a lot of physical therapy for different areas of my body over and over and over again, which that is what eventually led me to ask if these things were related, because I've had tendonitis in my shoulders and I had been diagnosed with carpal tunnel and tarsal tunnel, both bilateral, which are also a form of tendonitis, and somewhere in my research poking around, I had come across the idea that tendonitis can also be caused by inflammation. So I asked my doctor if it could be an inflammatory condition and that got me a referral to rheumatology and as soon as I saw that doctor and had blood work, it was confirmed that it was very obvious to her what was going on.

Jen: 2:06

So did you have any red flags before all of that that you really felt like maybe you should have picked up on, but maybe you didn't really understand that there was something to worry about?

Stasha: 2:16

Yes, absolutely Absolutely the tendonitis symptoms. Specifically, like every time I started doing something that was in any way repetitive, my joints would get stiff, which now that I know how RA behaves, that absolutely makes sense. It's all stuff that I can't do without making my body angry. It causes the joint to inflame if you overuse it. That's just how it behaves.

Stasha: 2:46

And I also had brain fog throughout college. I didn't know. I also was a mom. I had a toddler. At the time I was like, yeah, mom brain, I guess it lasts, maybe forever, I'm not really sure. And fatigue also. I struggled with being tired. I struggled when I was in school and then also working. I'd get to the end of the week, have a day where I did all of the things at the house and then I would just absolutely crash for a day or two. I just didn't have it in me to keep on going. And all of that, looking back, was a definite red flag. A definite red flag. Like my health wasn't great, but I did what we tend to do in our society and just push through and kept doing the things that I was expected to do and said, okay, I guess, I guess I'm just a tired adult. I guess I'm just a tired adult whose feet and hands always hurt.

Jen: 3:48

And did you ever look at anyone else and think why am I, this tired adult and they're somehow they're just doing all the things. They're out there mountain bike riding or hiking a mountain, and they're just totally doing fine. Did you ever think that? Or is it just me?

Stasha: 4:02

No, absolutely, absolutely, Constantly. And I remember like even as a teen I was more interested in participating in sports and stuff and I was cheerleading and I had troubles with my knees and I remember like being so frustrated that I kept having these issues over and over again and everybody else was like I'm like what is wrong with me? I'm an active person. I'd grown up gardening and cutting wood and lugging wood and we were a really active fishing outdoors family. So I knew I should be more fit and I never felt like I was as strong as I felt.

Jen: 4:44

I can definitely relate to that and I think probably many of our listeners can relate to that. So what does your current care plan look like?

Stasha: 4:53

Right now I'm on a biologic that's working really, really well for me. It's one of the biosimilars to infliximab and that so far so good, seems to be working. Just started in January and I do a little bit of like maintenance that was suggested by my physical therapist to keep me moving. That's pretty much it as far as medical right now.

Jen: 5:22

Are there any things that you do outside of the medical that you feel are a great suggestion to give to others to help with kind of controlling and maintaining your body?

Stasha: 5:33

Absolutely, absolutely. I drink a ton of water hydration to clean you out, to nourish you. For all of it it makes the biology work. It's really important. I make sure I take my vitamins every day, I put myself to bed at a reasonable time, make sure I get some sun on my face any day that I can and spend some time outside. Those things are all really, really important. And then I lean pretty heavily also into natural anti-inflammatories. You can find lists everywhere. There's all sorts of plants and foods that can help knock down inflammation. So I try to add a little bit of that into my day-to-day life, just kind of rotating through some different things that are all helpful.

Jen: 6:18

What are?

Stasha: 6:18

your favorites. My favorites are green tea, peppermint and cannabis in many different forms, but cannabis salve especially is great relief for inflamed joints.

Jen: 6:32

Absolutely, and you hear so many people in our community talk about the benefits of that. Whether it be a face lotion or a salve or an ointment or a tincture, there's been a lot of benefits from that. Yeah, it's definitely a handy plant. Okay, so I'm going to shake things up a little bit. I'm going to skip ahead to some other questions, because why not? So tea or coffee? Are you a morning person or a night owl?

Stasha: 6:55

Morning.

Jen: 6:55

Would you ever want to be?

Stasha: 6:56

a night owl? Not really. I dabbled in it in my 20s, but that was good.

Jen: 7:01

I think my version of a night owl to people is I'm up till about midnight, but that's my version. So reading a book or watching a movie, reading, a book. Do you have any current favorite books that you like right now?

Stasha: 7:15

I am getting ready to finish up the Undead series, which is by an indie British author, rr Haywood. It's absolutely fabulous, best zombie series I've ever read.

Jen: 7:27

Okay, I'll have to check that out. Okay, next one Cooking at home or dining out.

Stasha: 7:32

Ooh, depends on the day. I do like to cook, but I love a good meal that I didn't have to prepare to.

Jen: 7:38

So, at home, what would be your favorite meal? Probably tacos, okay. And at a restaurant, what would be your favorite meal? Sushi Fun. I love sushi. It's a good food. Okay, let's see here. Beach vacation or a mountain retreat? Beach Do you have a favorite beach? No?

Stasha: 8:00

No, I couldn't possibly pick. There's a rocky beach near us called Jasper Beach. That's all really polished, rounded pebbles. That place is really really lovely, but I really like all seashores, lakeshores.

Jen: 8:15

And for listeners, let's share where you're located.

Stasha: 8:18

I'm on the coast of Maine, so I grew up hanging out beside the water.

Jen: 8:23

And I've never been, but I've seen some pictures and, oh my gosh, it looks so beautiful over there. Someday, someday, it's on my bucket list, along with Vermont, vermont and Connecticut. I always feel like you know those are the kind of places you need to go in the fall At least that's my interpretation.

Stasha: 9:45

Absolutely yeah. Vermont's gorgeous. That's where my little sister lives.

Jen: 9:50

Do you get to go visit a lot? I do jealous, jealous. Okay, now we're gonna go back again. What treatments or therapies do you feel have been most effective for you at this point?

Stasha: 10:00

definitely the biologics. I've had a couple of those work really well for me. The first one for probably five years, before it stopped having so much stopping power for me. The other thing, physical therapy. My gosh, I wish that that had been a day one offer, because my physical therapist taught me so much about protecting my joints, about different ways that I could do things to compensate for the weaknesses that my body does have, and just overall maintenance of mobility.

Jen: 10:37

Definitely, and I think that's something that a lot of people don't realize is so beneficial, and we think of it as something we have to do because we have to like we've had a major injury, we've had a surgery. This is something we're forced to do. What they don't think about is how much is actually going to help you if you're dealing with something like we are so with your physical therapist. What kind of things do you cover?

Stasha: 10:58

We work on first mobilizing any joint that is locking up, and then we work on strengthening the area around it, because strength leads to healthier joints.

Stasha: 11:13

It's super important, but it's also near impossible to strengthen a joint that is not able to move Right, so you kind of have to do a little bit of both. So it's some joint release hands on stuff and some muscle building stuff that I have to do by myself and then, like I said, she also. She's been really great about looking at the things in my day-to-day life that I need to do and helping me find strategies to get those things done with the limitations that I run into as they pop up.

Jen: 11:47

What do you feel like is the one area you struggle with the most?

Stasha: 11:50

It's going to be pacing. I'm actually pretty awful at pacing. When it comes right down to it, I'm pretty good at taking a rest when I need to, but if I feel good, it is so tempting to run and just fill that day with doing absolutely as much as I can, and then I pay for it for too long.

Jen: 12:25

Absolutely as much as I can, and then I pay for it for too long gosh. I felt like I overdid it yesterday. And you're saying that many days a week is probably because you're not pacing yourself well enough or giving yourself the needed break that is so crucial for maintaining the healthiest you can be right. So what kind of tips would you give yourself or someone else to help with pacing would?

Stasha: 12:50

you give yourself or someone else to help with pacing. I set timers when I'm doing well. I set timers especially if I'm sinking into a project that I know is going to grab my focus. I'm gonna be really interested. I'm gonna love that book that I'm reading. I'm gonna get really into that art project. So I need a timer to go off to say, hey, it's time to stand up, it's time to change your posture, it's time to move around a little bit, to give the body a break, because I can't do anything for a long time.

Jen: 13:19

Oh yeah, and what people can't see me doing to you right now is moving my wrist. But you know it's an example of something like that. Stop what you're doing. If it's work on the computer, stop, stand up. Stretch those wrists on the computer, stop, stand up. Stretch those wrists. Stretch the ankles, the hips, the knees, do a walk around the block. Whatever it is that works for you that gets that body pumping and get you stretched back out again, because the more we sit, still what happens?

Stasha: 13:43

we freeze up exactly it's the same. If you're doing a standing moving around task, Take that break and sit down for a second. Give your body a minute. Let things relax, twist things about a little bit that you've been keeping stable to hold you up.

Jen: 14:06

We get focused on these tasks, whether there's something fun or whether it's work, and we forget to stand up and stretch, we forget to take a drink of water, maybe we even forget to eat lunch Guilty. It's so easy to do when we're feeling well, and this is probably a great segue. So you and I met up in Colorado back in May. How was the travel? I?

Stasha: 14:34

mean because you're coming all the way from Maine. How did that go for you? That was definitely a little bit rough, I actually. I managed to advocate for myself, though, and asked for some extra travel time built into the schedule, so my mom and I did the drive to the town where the airport is the day before we had to fly, and then we flew down the day before I needed to be in Denver. So I built myself in a little bit of a cushion, and I also made sure that on those days, I did a bunch of moving before I did the sitting to travel because, and then after, when we got to Denver, we immediately went out and started exploring the town and got some movement in, so that it wasn't just a day of sitting in airplanes and airports.

Jen: 15:20

Definitely, and I was very jealous of you because I did not have that luxurious extra time built in we were on a family vacation at the ocean.

Jen: 15:30

The day we returned, I went to the airport and I remember telling everyone and they're looking at me like are you insane? Yes, yes, people, I am insane, and I was also jealous of all of you for getting there early, because you did have that time to look around and check things out. And I missed out on that. But it's okay, because that's not really what I was there for, and so I try to remind myself that. But I was jealous I didn't get more time with all of you, but I love all the time we did have together and we had some fun shenanigans.

Stasha: 16:01

Definitely, definitely, it was a good trip.

Jen: 16:03

What would be your biggest takeaway from the event?

Stasha: 16:13

I think for me it was. This is going to sound dumb, but the amount of interest that doctors actually have in patients, I don't know about you, but I don't always feel like they're interested in me so much as just telling me what they need to so I can leave them alone.

Jen: 16:26

I absolutely agree, especially because now I've been to that one and last week I went to the post ULAR in Portland and oh my goodness. And that one was with the Arthritis Foundation. So two different foundations. But getting to meet all of these professionals, all of these amazing, intelligent human beings, is so amazing, to find out that they care about us more than we would ever know. But there's so many bad doctors out there too that they give all of them a bad face, a bad name, and so we get to meet all these amazing ones and it's like, oh wow, can I keep you, can I hire you as my doctor? Sorry about that, sorry about that. I'm so glad I got that muted and you guys missed a really good sneeze.

Jen: 17:10

So if we think back to all of the many people that we heard and I know that we can't dive too much into it, but was there a speaker or a topic that really piqued your interest? Definitely, definitely. I was geeking out on so many people that when I got home I looked at my notes and I was like, wow, half of this doesn't even make sense, but it was so much fun and it was neat to meet them face to face and, like we've said, just to hear how much they truly care about us. So I want our listeners to understand if you're struggling and you currently have a doctor or a specialist as part of your care team that you feel like does not listen to you and does not care about you, if you have the ability, keep looking for a new one.

Stasha: 17:54

Yes, absolutely, and you know.

Jen: 17:57

I absolutely love my rheumatologist and after moving I was having a hard time wanting to let her go, and so I've lived here for almost two years and I see her virtually most of the year and in person, once a year, and I saw her last week and it was a great visit. You know, I was maybe there, maybe maybe 10 minutes, just because I am doing that well right now. Then I got to meet all these rheumatologists over here more local to me and I was like wow, they're pretty amazing Not to bash on her, but they're pretty amazing and it might be okay for me to transfer, but part of me is like, wow, I got to hear these people speak. Is this one taking patience? I really want this one. Wouldn't that be amazing? If we had that ability, that would work. And, granted, I know that. You know it's not exactly easy for them to help us virtually, especially when they need to see and fill our joints and all of that. But at the same time, if we could just pick anyone anywhere that we absolutely love and trust, that'd be great. So have you been to an event like this before and, if so, was it any different? And if not, do you plan to do more.

Jen: 19:08

I love the fact that we were invited to do this and that the Rheumatology Research Foundation truly does care about us and they truly want to hear our voices, our opinion, because they want to make things better. They want to. I can't express enough how incredible it was. And then, bonus, I got to meet all of you, oh my goodness. So I want to talk a little bit about resources and support. So what resources? Whether they be a book, a website, support groups, anything like that what resources do you find most helpful?

Jen: 19:37

Yeah, I think it's healthy to have a good mixture of both, because, you know, it's kind of fun to have some light and playful stuff. It's kind of fun to watch people make some TikToks or some reels making fun of our health journeys and what we deal with. But then we also want to find the facts too. I think that's really important, and you have joined the wonderful world of creator land. I don't know what to call that creator something. We'll just call it creator land, just for fun. I absolutely love the content you've been sharing. It's so beautiful, it's so you. I love all the green.

Jen: 20:10

I love it. It's so you, I think. At the end of the day, if we think about the things that we like and we enjoy, there's people out there that are like us. So focus on what you like and what you enjoy and your people will come. And you know, it's interesting because anyone that's stuck around for very long, they've seen kind of how my work has shifted. You know, as sometimes it's seasonally, sometimes it's my mood, sometimes it's our health, you'll see creators evolving and tweaking. Maybe their color schemes are different. When my hair started falling out, a lot of my content had to do with alopecia areata, because I wanted to learn more about it, but I also wanted to share with people that were dealing with it.

Jen: 20:50

And so it'll be interesting to watch your journey and watch how you change over time. But I love, I love you guys got to go check her out. It's beautiful work and you have the biggest heart. I love you to death. So there's my shout out.

Jen: 21:03

So are there any specific healthcare professionals or clinics that have made a significant difference in your journey? That's so good and I think that's important because you know, for those that have not experienced an infusion room before, I know, for me the first time, oh my gosh, it's so scary. Oh my gosh. I don't even know how to explain it because it's not that it's necessarily a scary room. A lot of them are nice and clean. They're sterile, they're beautiful. They might have a bunch of televisions there to watch TV. I always would watch HGTV and pass out. They typically have snacks and drinks and the nicest people. They're great. But, like I said the first time. So when you went for the first time, how was that for you? How did it go getting your IV put in? Did you feel like it went pretty smooth? Yeah, absolutely. There's things that you can do and if you know that this patient is a hard stick, it's okay to go find someone else.

Jen: 21:58

I'm an easy one. I call my vein the rope.

Jen: 22:01

I don't know if you can see that, but I call it the rope because it's so gosh darn big and out there and, granted, it's never the one they wanted to use because it's in the middle of my arm. They always want to do the top of the hand if they can, especially if you're doing a long infusion, but I think they got to know me enough and knew how much my hands bruised and it was just that uncomfortable for me that I finally caved and they agreed to do my arm and and I liked that because that meant they were listening to my needs and my desires and I think that's important. It's okay for people to speak up. Did you feel like you needed to speak up at all, or have you have you?

Jen: 22:33

I think that's a prime example, because I think sometimes we're assuming okay, maybe I'm wearing it wrong, maybe I'm not wearing it long enough, maybe I'm not wearing it right. But also, at the same time I don't know if you follow hand coach Corinne, but one of the things that she talks about is also not overwearing them, and I almost wonder do they bother to tell us not to overwear them? Because if we do, that's going to cause pain also. So is that ever something that they brought up to you?

Stasha: 22:59

That absolutely makes sense. Yeah, absolutely.

Jen: 23:02

So have you found something that works for you now? Yes, I cannot agree with you enough. So how do you stay informed about the latest research and treatments related to your condition? Now remind me, if I remember, you were quite skilled in the whole research realm.

Stasha: 23:15

I love it.

Jen: 23:16

That's okay, I love it. So the next topic I want to dive into is tips and tricks. So do you have some practical tips that you can share for managing symptoms or flare-ups? Most definitely, I think that's important, and we skip it.

Stasha: 23:31

We skip it a lot.

Jen: 23:42

And I think there's ways to share with the people around you what's going on without sounding like the whiny complainer Because I know several of us we worry about sounding like, oh, I'm just whining again. But I think there's ways that we can say like, look, today's just a little rough, maybe my hip is hurting a little bit more today, but there's ways to go about it and just share what's going on with you so that if things do elevate to a bad situation, they're not surprised. I think that's why I tell my family so much what's going on with me, you know, because I want to make sure if suddenly I wake up and it's like an emergency situation, they're not surprised because they saw it coming. Absolutely, because I think that's my biggest annoyance is when all of a sudden, someone's like I need to go to the hospital, blah, blah, blah, blah, blah, and I'm like you were fine, like 30 minutes ago, what's?

Stasha: 24:24

going on.

Jen: 24:26

And my husband's guilty of that. You know, there was one morning he woke me up and he said your mom's visiting. I don't want to stress you out, I'm going to the emergency room. I think something's wrong with my tooth and I'll be fine, I'll take care of myself, don't worry about it. And he just leaves. And I was like the last few days you've been fine. No, he wasn't fine.

Jen: 24:46

And so I mean that's my way of saying whatever it is going on in your life, find a way to share with those around you. It doesn't have to feel embarrassing. Just tell us what's going on and, gosh, there's nothing to be embarrassed about. We're all human, we all eat, we all poop, we all get sick, we all have problems. So, whatever it is, it's okay to talk about it, and there's ways to find around sounding awkward or disgusting. We can still talk about it Absolutely. And you can even just say you know, my body's a little angry today, I'm a little sore. Or if it's a stomach thing, you can just say oh, my stomach's a little upset today. And, like you said, that's where you're skipping all the gory details. But at least you're telling people I'm feeling a little off Be gentle.

Jen: 25:31

Okay, so do you have any advice for others on balancing work, social life and self-care? Absolutely, I look at it like this we own the house together, we live in this house together, and so if I need your help with something today, I need your help with something today. Or maybe we divide up the tasks into what we each like to do. I used to do that, even with my kids. I would write a list out of all the tasks that need to be done and they would each choose one. I had some weird kids.

Stasha: 26:01

Weird weird.

Jen: 26:03

One of my daughters absolutely would do anything to get out of folding laundry. She would sign herself up for cleaning toilets. I know, I know. The first time I saw her choose toilets I was like are you kidding? You're willing to clean the toilet? Okay, I guess I'll take it, I'm not going to complain. I'm going to walk away confused, but I'm not going to complain. And then it was our son of all people that wanted to fold the laundry, okay, okay. So yeah, I mean, if that is what you have to do, get your family together, make a list, have everyone pick the things that they think fit them best. I guess, oh gosh, yeah, and that's a great idea.

Jen: 26:40

I think you can never have enough lists to remind you of what's going on in your life, so that you don't forget it. So, movement, motivation, sorry, excuse me motivation and inspiration. What motivates you to keep going on a tough day? I love it. Okay, my last thing for you today Do you have a favorite quote that you live by?

Jen: 27:01

I love that. I love that If you're overwhelmed by your house and all you can handle doing is taking out the trash, it's better than it was. I love that. I think that needs to be. You need to make that into a post. I like that. I like that. Well, thank you for sharing your time with us and I hope to have you back again. Well, my spoonie sisters, you need to go check out Stasha. I'll have all of her links in the show notes I almost said bio In the show notes and you can find and follow her. But definitely go check her out and she's a great support system and a great person for you to get to know. So thank you again and until next time, don't forget your spoon.