fbpx
two caucasian women with brown hair with the words "Tackling rheumatoid arthritis with obstinance and humor: stasha's story"
Patient Stories, Podcast

Tackling Rheumatoid Arthritis with Obstinance and Humor: Stasha’s Story

5 months ago
52 min read
FacebookXRedditPinterestEmail

Listen Now

Watch the Video

Summary

Have you ever been diagnosed with something like carpel tunnel, only for your eventual diagnosis to be a more systemic condition like rheumatoid arthritis? In this episode, Stasha shares her diagnosis journey and reflects on what it was like parenting small children while learning how to adapt to rheumatoid arthritis. 

Stasha also shares how her quest to merge science-based and natural methods led her to starting a blog. Cheryl and Stasha reflect on the role “obstinance” or stubbornness has played, and reflect on the therapeutic benefits of humor.They also discuss how they view assistive devices in a positive light, and discuss how their identities have been affected by chronic illness.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Stasha (Annastasha Parker) 

I’m a passionate advocate for self love and self advocacy. I think they are both critical to my living well with RA and other autoimmune issues.  Sharing helpful tips, hope, information, and my own story on my blog tenaciousME gives me an outlet and hopefully helps others feel less alone.  

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Full Episode Transcript:

Cheryl:  00:00

Hi, I’m so excited to have Stasha Parker on The Arthritis Life podcast today. Welcome!

Stasha:  00:05

Hi.

Cheryl:  00:08

Can you just let the audience know a little bit about you, like where do you live? And what is your relationship to arthritis?

Stasha:  00:17

I am born and raised in Maine. I’ve been here on the coast my whole life. And I have, I was diagnosed with rheumatoid arthritis in my 30s. And I’ve been dealing with that. And I’ve got also Hashimoto’s and, you know, a couple other stragglers but.

Cheryl:  00:41

Yeah, they, as we like to say, autoimmune diseases don’t like to travel alone. They bring their little friends with them. So, yeah, let’s just delve right into your diagnosis story/saga, you know, how were you diagnosed? What was that process like?

Stasha:  01:00

So, it actually it took a really long time for that to get sorted out. I started having wrist pain and knee pain and trouble with my feet when I was really pretty young. By the time I was in my late teens and early 20s, I had quite a bit of problems with my wrist. And I started having different, all types of different body parts would get tendinitis. And it would come and it would go. Sometimes before I even got to see a doctor, as these inflammatory things do, as I’ve later learned. And — sorry, I lost my train of thought.

Cheryl:  01:47

Oh, no, that’s okay. Yeah, it’s actually so frustrating when you have symptoms that come and go, and then you finally get a doctor’s appointment. And then, the symptom isn’t there anymore.

Stasha:  02:00

Right, exactly. And at the beginning, it was mostly in my wrist that was swelling and pain. And I would go to the doctor and I would say, “I’m having pain and swelling.” And sometimes I’d say, they’re stiff. It’s like my wrist doesn’t want to move. My hands are cranky. And for whatever reason, timing perhaps, they kept here hearing tingling and numbness even though those weren’t symptoms I was having. And they were saying carpal tunnel, over and over, I heard ‘carpal tunnel’. And honestly, by the end of it, I’d had been told by seven different doctors that I had carpal tunnel. And I switched jobs and went to a really a science-based job where they had really good occupational health and occupational therapy on site.

And I started seeing their doctors. And one of their doctors was actually one of the ones that clued me in, it seemed to her like this was something more going on. Because I had, right from the start, problems with my wrist, problems with my knees, then I’d have a problem with my ankle. And then, my neck started about the same sort of symptoms. And I had a lot of shoulder troubles. And from there, she moved on before I moved on. And I saw two more doctors before I got to the point where they’ve done nerve testing. And they gave me the diagnosis of bilateral carpal tunnel and bilateral tarsal tunnel.

And that was the appointment at which I looked at my doctor and I said, “Okay, could this be inflammation? Is this a greater problem? Is it really structural, or is it something else?” because he was recommending surgery, or surgeries, and a lot of recovery. And for something that I just, it didn’t feel authentic to me. I never had pins and needles. I never had numbness, you know, it just, it didn’t fit. And so, he kind of gave me the, “Well, I guess we can if you really want to.” And I got a referral to a rheumatologist from there and then did blood work. And before I even got home, she had called me and told me that it confirmed that I had rheumatoid arthritis.

Cheryl:  04:50

Wow. How did you even know the word inflammation back then? Sorry, I stuck to where you were saying that they said if they thought you had carpal tunnel and you were wondering, because I don’t think I knew what inflammation really was.

Stasha:  05:04

I had my training in college was in marine biology. And so, I’ve done marine and terrestrial biology and animal, you know, marine mammals and human mammals are not that different. So, I’ve done some marine health courses and stuff. And I just had that science background. So, when I kept getting this diagnosis that just didn’t make sense. And I do, you know, I put my hand in the brace that they’d suggest and it was just making it so much worse. The more I immobilized it, the more it bothered me. And so, I started, you know, Dr. Google. Okay, nobody else is getting me the answers that I need. What does internet seem to think? And that’s where I came around to, okay, these things sound like they could be inflammation.

Cheryl:  05:56

Yeah, and I mean, you’re, it’s amazing, you’re like literally showing kind of the detective work of the diagnostic process where, you know, they say oftentimes, if you’re having pain that’s bilateral, like, in the same, the tiny joints of the finger to the wrist, and to be, quote unquote, ‘spreading’. Those are like classic signs of inflammation; worse with inactivity, or in the morning. And to make life more difficult, you can have both, right, you can have carpal tunnel and inflammation. 

Stasha:  06:29

Yeah, absolutely. Absolutely you can.

Cheryl:  06:31

That irritates the nerves. So, but yeah, you are literally telling, it’s almost like to a hammer, everything’s a nail. Like, a lot of times doctors are like, “Well, the most common cause of wrist pain for someone in their 20s and 30s is carpal tunnel,” versus rheumatoid arthritis. But you’re like, well, why is it also like, my ankles, my knees are hurting, like all these systemic signs.

Stasha:  06:55

All these other things, and I had had physical therapy for tennis elbow, rotator cuff three times, my knee three times. I’m like, okay, these are all joints. And they’re all acting the same, but at a different time. So, my science brain was like, this is connected. There’s no way that these things are not connected. It just, it didn’t make sense for the biology part, and it just it didn’t fit.

Cheryl:  07:26

That’s such a unique perspective to have. Did you have any of the systemic symptoms like fatigue, or high inflammation? 

Stasha:  07:34

Yes, I had no idea. I had no idea. Why would I? I mean, I had — when things were, I had a few, like, I’d say like, high flare times. Right after I had my first child, things were kind of rough, and I was really tired all the time. That’s when my knees were bothering me a lot. And that doctor told me to stop stooping down and stop kneeling, stop chasing my toddler up and down stairs. Which, you know, yeah, like, oh, okay. Totally achievable. Well, moving on. I guess we suffered through. But I mean, I was, I was tired. I struggled sometimes in college with keeping up with the course load, and I beat myself up over it, because, you know, what is it I’m doing wrong? Why am I not getting enough sleep? Why am I not rested? What’s wrong with my brain today? Why couldn’t I come up with that term? I know I know this stuff.

Cheryl:  08:33

Yeah. Did you know that that was related to your rheumatoid arthritis? Like, I didn’t know.

Stasha:  08:40

I didn’t have any of those answers until many, many years later. I had so many of the symptoms for almost 20 years before I got that final puzzle piece. And it all clicked together. Once I started learning about the symptoms, and I was like, oh, my gosh. That’s me.

Cheryl:  09:02

Oh, so back to the moment when you actually got the diagnosis from that rheumatologist. What was your initial response? Were you really sad, were you having mixed emotions?

Stasha:  09:14

I had really mixed emotions. My great grandmother had rheumatoid arthritis and she was really hunched over and little but, you know, she lived to be in her 90s. So, I was okay. My step-grandmother had also had rheumatoid so I’d seen kind of that up close and personal and I saw how she struggled. So, I knew down the road, it could be a lot more challenging. It, honestly, it wasn’t until I went to try to find more information that I started to get a little bit freaked out. Because the first thing I start to see is everyone talking about it being so important to catch it early, to slow it down. And I knew at that by that time that it had been a really long time. And we weren’t early. And it has been quite a journey to get that train slowly rolling.

Cheryl:  10:19

Yeah. Yeah, it is a very bittersweet, or just a bittersweet feeling, feeling to know that if you’re, if someone had put those puzzle pieces together for you earlier than you could have gotten on treatment earlier, and maybe had a better chance of going into remission. But, yeah, so I think your response is very common. And it’s also common, I think a lot of times people think of the diagnosis like kind of emotional and grieving process as linear, like, you get diagnosed, and then you feel afraid or scared, and then you’d like slowly feel better, better, better, as you get more into it. But for me, it’s been kind of like you described like you felt a little bit okay because you’re kind of relieved, because you didn’t, it wasn’t carpal tunnel after all. You’re like, yes, I was right. But then, it’s like, through time, it gets up and down and up and down. Because, yeah, it affects you differently, depending on what your life demands of you. Like you mentioned having little kids.

Stasha:  11:18

Yes, absolutely. Absolutely. And my oldest child was in his teens when I received my diagnosis, but I still had a younger guy. And he was three or five, somewhere around there, really active. So, we were still doing a lot of piping and stuff. And, and at that point, at the point where I finally really started pushing hard for answers, I was, I was near the end of my body’s ability to really keep moving forward without the help that it needed. And I’d already done damage, I had no idea. I had no idea the damage I had done. And so, you know, you start out, like you said, it’s an up and down, you find things that are working, and there’s a loss.

So, the soaring hope, and then, oh, this isn’t really working. And we’re coming down the other side, and it’s really hard. And I was maybe too late to save my career. So, that was another crash down when I realized I just couldn’t, I couldn’t return to work. I took FMLA with that mindset of okay, I’m going into treatment, starting this med, it’s going to work for me, will reduce my workload, we can do things a little differently, and I’m gonna be able to do this. But it just didn’t work out that way. And that was another one of those crashdowns. Where do we go from here?

Cheryl:  12:54

Yeah, what work were you doing? What were you doing at that time?

Stasha:  12:57

I was working for the Jackson Lab in the mouse rooms. I was a mouse breeder, animal care technician. So, I did some of the testing that they need to do on their mice and took care of colonies. And it’s a lot of repetitive work, using forceps and picking up little tiny mice and water bottles and whatnot. So, yeah, very hard on the hands.

Cheryl:  13:25

Very hard on it. I was just reflecting. And when I went to the dentist yesterday on, you know, have a little list in my head of most difficult careers to do. And, you know, dentist, surgeon, yeah, I’m going to add an a lab animal care technician on the list. It is, you know, and it is really hard to know, like, you said, you were on FMLA, the Family and Medical Leave Act, for those not in the United States because I know we have a lot of international listeners, you know, that’s Family and Medical Leave Act. So, you get a leave of absence from your job while your job is protected while you’re trying to get better. And you don’t know, at that point, are you about to go on one of the RA meds and have it have that miracle effect. It does for many patients, you’re all of a sudden, “Wow, I can move again,” you know, “I feel great.” 

But you don’t know at that point are you going to be one of the people who are you’re like, oh, this one didn’t work. Let’s try another one. And it’s very, yeah. How did your treatment — I mean, I know you said you ended up not being able to go back to work. So, that kind of begs the question, what — I mean, it’s hard, I’m sure, to condense as to what we talk for a whole hour just on our medication journeys and our treatment. But yeah, what, you know, what are some of the treatments you’ve tried on? And what has gone well with your treatment plan?

Stasha:  14:42

At first, we tried — we just kind of went through a bunch of things and crossed them off. They basically — I don’t, my system does not deal well with many oral medications. My stomach goes off pretty easily. So, anything that’s gonna make me have stomach upset constantly, it’s just gonna, it makes my quality of life worse being on sort of a medication. So, we eliminated some in that fashion. I had a nerve, a nerve reaction to one of the medications, I think it was Arava. It caused some tingling, so they had me discontinue that one. And then, we tried a couple of biologics, they gave me a little bit of relief. But it took a really quite a long time, I want to say, around three years to land on Orencia, it finally worked for me. And worked so well, honestly, that this last year, it lost its efficacy for me; it wasn’t really doing the job anymore. And because it had worked so well, though, I kind of clung to it for a bit longer than I probably should have. But then, I’ve moved on to Remicade this spring, and that’s not would really working well for me.

Cheryl:  16:12

Well, that’s great to hear. And I think many of us who’ve had this disease for over, you know, five or 10 years, have had that experience, you know, I’m on my fifth biologic and 21 years. So, it’s really common for one to work in at first for a while, and then your body either makes antibodies to it, or some other kind of mysterious immune thing happens where I’m going to quote one of the researchers I had when the researchers from the Benaroya Research Institute came on the podcast. They said, it’s like the immune system is — the immune system is an orchestra. It’s like, we know a lot about individual parts of the instruments. We don’t necessarily know how they all work together. That was on Episode 124, by the way. I’ll put a link to that one in the show notes. But I kind of imagine that sometimes. The immune system, it’s trying really hard to fight off, you know, what it was supposed to do, like the foreign viruses and stuff. But it also sometimes is like, “Hey, look at that synovial lining of their joints. That looks bad. Let’s get rid of that,” you know?

Stasha:  17:17

Yeah. I like to think of my immune system as a construction and demolition crew that’s just kind of working overtime. Doing everything they should and then some.

Cheryl:  17:30

Yeah, yeah. One of — I think Dr. Kara Wada and I were talking and she’s made the analogy that’s like a misbehaving toddler. It’s like, it has to do the right thing. But sometimes it just can’t, it’s just having a tantrum and decides to be irrational. And you’re like, but it’s, I think, for anyone listening who they may be in the very beginning of their journey, they might be on their first medication, and maybe the first medication is starting to wear off like Orencia did for you. It is hope — it does bring people hope to know that, you know, you’re not the first one for this to happen to, not in the sense of like, you shouldn’t feel that, like, it sucks. But people, this is part of the process. This is not — you’re not an outlier, this happens to a lot of people.

Stasha:  18:09

Yeah, I think another really important thing for people to know that I, I get the sense when I talk to people and support groups and such, that isn’t, I guess, common knowledge is if it’s not working for you, let them know. Don’t just continue to feel horrible with all of these symptoms. They can trial you on another medication. There are always more things that we can be doing. There are complementary therapies; there all kinds of different things that we can add that will help.

Cheryl:  18:44

Yeah, that’s a really, really great point. And I think, you know, in in the Rheum to THRIVE support group that I facilitate, it’s really an educational support group where we talk about little lessons that I assign to them, but also just have time for open ended support. It’s come up a few times when people say, “Well, I don’t know when something is bad enough to warrant a call to the doctors.” That’s really hard to know, in the beginning, I think you’re getting to know your body still, right.

Stasha:  19:12

It is. And you’ve arrived here sick, right? You didn’t land here because you felt great. So, what is feeling better from here? And how long you’ve been living with the symptoms, that answer might be really surprising to you, when you start to unearth what healthy you might have actually felt like and how long ago she was in the driver’s seat.

Cheryl:  19:38

Yeah, that’s really, especially when you’ve had a lot of pain for years. And, yeah, you know, it’s very often in the beginning stages the first few years, the whole treat-to-target concept in rheumatology is that you target full remission or getting the person back to their prior level before they started feeling sick. So, that makes sense if you’re in the first couple of years, right, and you can imagine, like I got diagnosed in 2003 for me. So, okay, I’m remembering what I felt like in 2000 to 2001, I’m going to try to get back to that. But now it’s 2024. I’ve had it for 21 years. I’m 42, I’m not going to make my target to feel like a 20-year-old, like, that doesn’t make. I’m not going to feel like that anyway, even completely healthy, able-bodied. So, as you age, it can also be really hard to know, what is my target, you know? Like, yeah, how have you — have you had those conversations with your doctor?

Stasha:  20:42

I have. And I’ve fought hard to align myself with doctors who believe that quality of life is probably the most important aspect of your treatment. Like, if you’re not feeling like your life has the quality that it needs, whatever that is, if you’re a person like me, I need to walk on the beach. I can’t walk on the beach, I’m gonna be really miserable. I’m going to be looking to invest in a rover that can drive me on the beach, if it gets to that. Like, it’s really important to me. So, that was, that has been one of my markers that we kind of follow, like, how are you doing? Can you now walk around on unstable ground? Is that something achievable for you? And we got me there. But I don’t know if we would have if we had just said, “Okay, how’s the inflammation doing? Is it good enough? Is that number coming down to something we feel like is reasonable?”

Cheryl:  21:52

You have hit the nail on the head on one of my favorite things to talk about, which is the difference between, like, functional ability and these questions they tend to ask us. Like, you know, my dad is a good example. Actually, I hope — I’m not using myself as an example for once. You know, my dad was at the — they were contemplating doing knee replacement for him. And they were asking him, you know, what his pain is on a scale of 1 to 10. And he said something like, you know, a 5 or 6, because he’s like, I don’t feel like someone’s like stabbing me, but it’s still really painful and stiff. And they’re like, “Okay, well, that’s not too bad.” But then, later on in the appointment, he just happens to casually mention, yeah, like, I can barely make it from our front door to the mailbox, which is like 30 steps. Like, this is not like a farm house where the mailbox is like a mile away. And the doctor, it was like an ‘Aha!’ moment for the doctor. Like, oh, wait, you are not able to function in your life right now, you know?

And that is such a crucial thing for anyone listening to communicate to your doctor, what is it in your life that not only brings you quality of life. In your case, definitely like walking on the beach brings you quality life, that’s extremely important. And you can even go a step more basic than that, to communicate to a doctor, what are the specific functional things — this is me being an occupational therapist — that you cannot do. Like, in OT, no task is too small. You know, if you have a hard time holding your phone because your fingers are fatiguing, or you have so much pain. That’s something that you — that’s part of your life because we all need our phones now, obviously. Stuff like that, or you can’t, you know, wash. People say, “Well, I didn’t tell my doctor because it seems so basic, but like I can’t do my hair.” They need to know what you can and can’t do. Like, it paints a more vivid picture for them.

Stasha:  23:36

It does. It does. Because you get just that short window and they’re gonna go over your symptoms and if you don’t tell them, they don’t know. And they can help you with so much more than you probably think they can. If they can’t, they’ve got a colleague who does other types of treatments that you can access.

Cheryl:  23:58

Yeah. And sorry, now my head is skipping back to the timeline. So, when you were diagnosed, your son was, your youngest was three. How old is your son now?

Stasha:  24:07

He’s 16. 

Cheryl:  24:09

Okay. So, and this is this off the cuff, so I didn’t prepare you for this question. No worries if you don’t have an answer. But one thing people ask me a lot who have small children or toddlers or preschoolers, is how did you talk about your disability or illness with your kid, kids, and yeah, any words of wisdom for that?

Stasha:  24:32

So, we have an ‘Honesty is the only policy’ kind of household and that’s the way I was raised, too. All questions are always answered as honestly as you can. So, when it came to, it was just kind of natural, you know, for me to say, “I can’t do this today because my feet are really bothering me. And so, we’re gonna have to do this different. I’d love to get down on the floor with you. But I’m having a hard time with my knees. Can you come up here and sit with me instead?” And I can, I can say that, because I had, with my oldest, I was a lot more functional; with my youngest, I was struggling a lot. So, it’s almost like they had two different childhoods. And I felt quite a lot of guilt over that, as a mother will. That he hadn’t, he didn’t get that active of mom. And he’s an extremely active nature kid. So, I felt that maybe kind of double because I couldn’t be out there with him, taking it all in, and sharing all those wonderful biology lessons, and all that fun stuff. But I found that it’s made my kids really caring and conscientious. They’re very helpful young men. They notice when people need help, and they lend a hand. I think as long as you’re open with them, kids are full of forgiveness and love and understanding and acceptance there. They roll with whatever is normal.

Cheryl:  26:19

Yeah, I think that’s a really, really beautiful point. And I liked that you acknowledge like, you’re not sugarcoating it. You’re saying like you did feel guilty. But at the same time, like you can recognize that there are so many, you know, that you will never be able to disentangle what parts of their personality were shaped by this, right, versus other life experiences. But it certainly, I think there is a lot to be said for raising children in an environment where they understand that humans come in all shapes and sizes and abilities. And, you know, and privileges, you know, like health is a privilege, like being able to have the privilege. We don’t all have that, you know. And you kind of open your eyes to that earlier. Whereas I think a lot of kids who don’t, aren’t exposed to that, kind of feel invincible or that able-bodied, being able-bodied is the only right way to be, you know, in the world.

Stasha:  27:17

Right. Well, actually, so a little story from when my youngest was little. He had a friend he talked about in school constantly. He was always telling me stories about this person that he was hanging around with on the playground. It wasn’t until I went to his spring concert that I discovered that Noah lived in a wheelchair. That’s not something that’s an ever even mentioned, thought about. It didn’t bother him. He didn’t ignore that kid because that kid couldn’t keep up. He went over and talked to him. And I think that’s because he had that early understanding that we’re all great. No matter what we can do, we’re all great.

Cheryl:  28:07

Mm-hmm. That’s a really, that’s a really beautiful thing. It’s so funny that the things that we think are going to be a big deal to kids are usually not, and then something we didn’t even think of is a huge deal. Like, “Well, he likes Nintendo and I like the Xbox,” or something. You’re like, oh, sorry. Those things are really, apparently those are extremely important. Like, yeah, I remember the first time my son was really into cars and trucks and things that go, you know, Richard Scarry book reference, you know. And the first time we were at, we were at Gas Works Park in Seattle, the first time he ever saw a power wheelchair user, he looked up at me, like, eyes as big as saucers. He was like, “Why do we not have one of those?” Like, that is a chair that is electronics, that has the two things I love the most in the world. It’s electronics and wheels.

Like, what? Like, he just only saw it — and this is not to say that everyone’s that way — but he saw it as like the independence mobile that it is to be. He didn’t see it as this sad, tragic thing. He was like, “Why are we walking, mom? We could be using that.” So, it’s just, anyway, that’s — thank you, thank you for going down that road with me because that’s something people ask a lot. And the other thing I wanted that’s kind of unique in your story or something I wanted to talk to you a little about is how your experiences, having to go through so much self-advocacy just to get your diagnosis and how that turned you into writing, I would love to hear more about how that evolved.

Stasha:  29:48

Yeah, so after I stepped away from work and gave up my — I didn’t give up, on that note. I took that disabled label and I set it to the side. And I said, I’m not sure how I feel about that. I’m not sure I can wear this. And that’s one I still struggle with. And I know it’s not a bad word. And I’m trying to trying to convince myself that it’s not me, it just, it’s a reality of how I face the world, right. But after a little while of just kind of sitting with that and trying a few different treatments, try adding natural stuff, spending a lot of time combing the Internet, trying to find out whatever it was I wasn’t told, because of course, by this time, I didn’t have a lot of trust in doctors anymore, either. You know, like —

Cheryl:  30:50

From valid experience. 

Stasha:  30:52

So much experience with people telling me that it was just this, it was just that, I just needed to lose weight, I just needed to rest, you know, all the things that you hear on the way to an inflammatory diagnosis sometimes. So, I had been spending a lot of time doing research, and I was finding information, but I wasn’t — I was finding kind of two camps. There’s the science camp, and there’s the natural remedies camp. And there’s so little crossover.

Cheryl:  31:30

The Venn diagram is tiny.

Stasha:  31:32

I was getting kicked out of both groups because I leaned heavy on science and nature, I don’t see where they have to part for me. A natural remedy that works just needs the science done to back it up and probably need some funding or something to get that done, right. Like, I don’t knock it until I’ve tried it. And if I’ve tried it and it works, I have to believe that it works.

Cheryl:  31:58

Right. Yeah. So, there’s a huge difference, too, between — I know, we talked with this, little bit of a spoiler alert, or not spoiler — context, that you and I met earlier this year 2024 at the Rheumatology Research Foundation’s Investigators meeting, and we were both invited there as like patient advocates. We had a really great conversation about this. And listeners know, this is one of the topics I find most interesting, which is this, yeah, well, the thing I find interesting is the psychology of medical decision making, you know, and then, but that the psychology of it is informed by what information we are exposed to, and how that information is raised, like linguistic arrays, like in terms of costs and benefits. And, you know, there’s a huge world in between saying, “I tried this, and it works for me, it might work for you,” and, “I tried this, and it worked for me; therefore, it will work for you.” Like, those are completely different statements, but often they’re seen synonymously. Anyway, so, continue.

Stasha:  33:08

And that’s what I was getting kicked out of. Some of the groups are saying things like, “I tried this, and it worked for me.”

Cheryl:  33:19

And that shouldn’t be the case. You should be your own experience is valid. And I’m in a support group. Like, obviously, the moderator support group is allowed to like decide, that’s their own little like dominion. You know, I have my own so I’m like, I am the queen of this. I can say what the rules are. But yeah, it’s a shame that those are conflated. The ‘I tried it, it worked for me’ is not the same as ‘I tried it, therefore it’ll work for you’ and ‘It worked for me, it will work for you’, you know?

Stasha:  33:46

Absolutely. Absolutely. So, I was finding, you know, the two distant voices. And I started to think about — writing is to me, a hobby. I love science; I love doing research. I’m pretty good at breaking something complicated down into terms that kids can understand because that’s what a lot of the science leadership positions I had were is working with kids. So, I started to consider how I might help people to understand this information in a way that is approachable as far as this. Honestly, the treatments that are being offered by medical professionals, they get the scary rep because a lot of the information you can find about them is just the negatives, you know what I mean? Like, it’s a whole rep sheet.

Cheryl:  34:46

I live this every — this is all, you’re talking about the comment section. Every video I make about methotrexate, the comment section’s like, what? Why are you saying it’s like fine for you? Like, I thought everyone who takes it is like throwing up all day and gets cancer, you know. And you’re like, whoa, whoa, whoa. And again, valid experience that some people have, nausea is the most common side effect. But it’s like it doesn’t happen to everyone.

Stasha:  35:10

No, it doesn’t. I mean, for me —

Cheryl:  35:11

Sorry. Preaching the choir.

Stasha:  35:

For me, it didn’t work; for you, it works great. And we’re all different individual biological beings. And so, I wanted to start kind of sharing my own experience, partially just to keep track of what in the heck it was I was doing. But I also wanted an outlet for that information gathering researcher. She needed something, or I’d go a little stir crazy inside my head. And if you don’t keep your very imaginative and busy brain busy doing positive things, anxiety just gets worse and worse and worse, right? It creeps. Yeah. So, I took up writing again, and just one day decided I was gonna start a blog, and wrote down my diagnosis story for the first time and shared it out into the world. Kind of nervously, because I’m actually very much an introvert; I’m a private kind of person. But I felt like there aren’t enough people saying that you have to, for one thing, fight for yourself. You have to be your own advocate. You have to know how to talk to medical professionals. You have to know how to ask for help. There’s all of these lessons that I had learned that I just felt like I needed to share with people who hadn’t heard yet.

Cheryl:  36:51

Mm-hmm. Yeah. And it’s called tenaciousme.org. And I love the tagline: Tackling disabling autoimmune disease with obstinance and humor.

Stasha:  37:05

That’s me in a nutshell.

Cheryl:  37:08

I was gonna say, when I met you, I would never have put the adjective ‘obstinance’. But because you’re a very pleasant, warm, friendly person, but I’m wondering, I have an idea of what the obstinance means. In this case, how would you describe it in your words?

Stasha:  37:28

It is that sturbborness. And is that voice inside me that says, well, you’re not really exactly disabled. You’re just slowed down a little. You’re not really like, yes, RA is impacting and shaping how your life goes. But you got to be in the driver’s seat and decide which turns we’re taking and which turns we’re not taking. It is — I don’t know, I just don’t have a sit down and be sick kind of mentality. I’m too stubborn.

Cheryl:  38:06

Yeah, yeah. And I think, you know, there are — I think we’ve kind of alluded to a conversation, like, I want to come back to stubbornness, because that’s what I thought it meant, that’s good. But also, there is a rich conversation in the disability community, about the language we use around, you know, person with disability versus disabled person. And it’s, I’m very familiar with these kinds of identity-based debates, because my specialization in occupational therapy before I specialized in arthritis was developmental disabilities, especially autism and kids that are twice exceptional.

So, Autistic children that are also like, highly gifted and have like multiple disabilities. Maybe they have ADHD, anxiety, autism, and they’re gifted. Really, really fascinating work. But there’s a huge debate in the autism community or Autistic community about, you know, do we say ‘I am a person with autism’ or ‘Autistic’, you know, as part of my identity. And so, that that has led, I think, that was started in my understanding before the disabled one and the disabled, you know, am I disabled versus a person with disability. And I think, before we even get to that language, I think it’s you hit on something that I experienced as well, which is that some of us are in that messy middle, whether you call it person with disability or a disabled person, where I’m not able-bodied enough to where this doesn’t really affect my life, but I’m not so affected that, like, I would not qualify for official like disability benefits, right, at this level of function that I’m able to do.

I’ve been very lucky. I did get put on fairly early and aggressive, I got put on early and aggressive treatment on my first systemic full body flare, although I had had a sprained finger for over a year before my diagnosis, which was, in retrospect, that it wasn’t a clear case. It wasn’t bilateral at that point. But, you know, it’s hard for us to find an identity where people who where they’re partially well-controlled with medication. Like, where do we fit in, in the disability community, too? Have you found that with your, like, advocacy work and stuff like that?

Stasha:  40:19

Yes, absolutely. It’s a touchy subject. And I think, in a lot of ways, it’s because it’s so personal to people. I mean, you’re talking about how I identify myself, and I’m a person who’s never been super comfortable with labels anyway. I think that when we label ourselves a certain way, sometimes we’ve placed a limit that it cannot be real. It might be something you can push out of the way and not be that person, you know. Like maybe you’re a nice person, but that doesn’t mean everything you ever do has to be nice. 

Cheryl:  40:57

Yeah, that’s true. That’s true. 

Stasha:  40:59

And maybe sometimes you might have to be not nice, because that’s what the situation demands.

Cheryl:  41:05

Yeah, yeah. Yeah. And, you know, so I think it is, each person, you know, has the freedom to choose how they want to do identify. But I do think the thing I respect about or the thing I understand as a positive in people’s effort to reclaim the word ‘disabled’ is to say that, you know, this is not the worst. Like, if you think of, you know, the worst thing that could happen to you, right, a lot of people are like, “Oh, I don’t want to be disabled,” that’s like, or this kind of forced toxic positivity, where you’re like, “You’re not disabled, you’re a person with a disability,” like, you’re a person first, you’re like, well, now you’re just, you know, you’re now making me feel like you’re — what’s the word, when you’re like treating someone —

Stasha:  41:49

Minimized?

Cheryl:  41:50

Yeah, minimizing it, or so, you know, it’s a whole interesting, you know, world. But at the end of the day, I’m on a practical level. Call it what you want, but just help me and see me, you know, like, see me and see that people with disabilities or disabled people are valid members of society and don’t, you know, I just got back from a 20-year college reunion, and I was actually able to ask in front of like a hundred people, the President of the college of Vassar College, like, what have you done about accessibility in the last 20 years? Because it has a beautiful, historic, you know, Vassar College in upstate New York, it is absolutely stunning. Like most buildings built in the 1800s and 1900s, you know, none of them are very accessible. But so, she actually spoke to that being a priority, which, which is great, we need more places to be accessible.

Stasha:  42:46

Yes. For me, that’s more important than whether or not I identify as disabled. Like, obviously, I recognize that there are things that my physical being is not very good at doing this. And I see other people who are not very great at doing some things, too, because their body just isn’t up to the task. And so, I would love to see us approach it. And maybe even not just entirely as disabled, but you know, everybody’s got a little bit of something is hard for somebody. Everybody’s got something that’s hard, and maybe you’re not really disabled, but you still have a hard time with heavy doors, because you just don’t have the arm strength.

Cheryl:  43:35

Exactly. There’s a huge, there’s a huge spectrum of ability, and especially when you include mental health in that, you know. I feel so lucky to have, you know, we think about like adverse childhood experiences. I grew up without any adverse childhood experiences, that’s like so, you know, my own therapist was like, your childhood was a positive outlier. Like, I just love it. I’m a positive outlier, you know. And that is something that, yeah. And a lot of people, yeah, I feel so fortunate for that, and that that has shaped who I am. And that’s something that’s like, you know, but at the same time, so it’s like, even though my body maybe has broken down and I still carry other kinds of positives, I think that’s seeing yourself — I think when you when you get diagnosed something like rheumatoid arthritis or any other autoimmune, you get kind of can become very myopic vision, like, just everything becomes about your condition, you can forget. Yeah.

Stasha:  44:31

Yeah, you can. And that’s dangerous on a lot of ways because it limits where you’re, where you think you’re going because you have this picture of what somebody with rheumatoid arthritis can do, what that looks like. And so, it might not match your reality very much at all, depending on where you’re willing to put your energy, what kind of help you’re able to receive and how your body responds to all that. Your journey can be completely different. And the other end of that, that I find perhaps even more damaging is, if you’re always looking at yourself as a rheumatoid arthritis patient, you’re gonna miss that thing that has nothing to do with rheumatoid arthritis that you should have checked out and gotten some help with, and it turned out it was really bad for you.

Cheryl:  45:27

Yeah, I love that. And on either side of that — either other side? And on the other side of that is like, in Acceptance and Commitment Therapy, which I’ve talked about ad nauseam on this, but if it’s your first episode, it’s a mental health approach. It’s kind of like a traditional cognitive behavior therapy and mindfulness-based practice had a baby. And the part that goes into behaviors, actually, is values identification. So, thinking about who you are as a person, and what is it that’s important to you.

Like you mentioned earlier, learning. For you, learning, researching, being in nature, like these are all things that your disease hasn’t, it doesn’t fully take away from you. It may make things harder, for sure. We have to do differently, but and we — I walk people through this a little bit in the Rheum to THRIVE group, we’ve kind of set up systems where they can — or set up some scaffolding where they get to walk through and a lot of people say like, “Wow, I’ve kind of — this is helpful, because I forgot to look at my life at that 20,000 foot view.” Which, if you’re in moderate to severe pain, completely understandable that you aren’t, like, everything hurts, anyway, what’s the meaning of my life?

Stasha:  46:38

Yeah, I would say it probably took me five years to start to consider what the meaning of my life might be now. Before that it was survival mode definitely. Let’s get me back to where I don’t feel like an exhausted owl all the time.

Cheryl:  46:55

Oh, my gosh. My friend sent me this. Paul, Paul, if you’re listening, hi. He sent me this really funny cartoon the other day that was like, raise your hand if you, like, who’s having a great time, or who’s having a great day? And like, no one raises their hand. Like, who’s having an okay day? And like, everyone raises. Where it’s like, sometimes we just want to have, like, it’s okay to have just an okay day, you know. Or like, I just want to not feel completely horrible, you know? Yeah.

And before we go to the rapid-fire questions, you mentioned earlier that you are typically — or before you started your blog, you felt like a private person. That’s something that I want to talk a little bit about, because I’ve always been a very public, like, share everything to the universe person. So, that wasn’t one of my struggles with sharing my story. Although I wasn’t public about mental health. So, I have anxiety, or I’ve historically had anxiety. And I’ve had ups and downs with it. But I didn’t talk about my anxiety until the last few years, because I was like, well, I’ll talk about my physical stuff. I’ll talk, you know, but I had a mental block on that. And it’s not right or wrong. Talk about anything publicly or not. 

Stasha:  48:04

Yeah, no, it’s all up to us. 

Cheryl:  48:06

Yeah, but what was it like? Like, how, when you made that choice, I mean, I’m guessing it was stressful. But then, when you made the choice to share publicly, how’s it been to get people’s responses to your story, and just anything you want to say about that?

Stasha:  48:20

It’s been overall pretty positive. It made me feel, I mean, honestly, less invisible. And as soon as I started talking about it, I discovered there were other people around me that were already in this boat, right? You don’t know who’s struggling until you say, “Hey, I’m struggling.” And people say, “Hey, me, too.” So, I started to build a little bit of camaraderie, I suppose, you know. And it’s just been helpful to have that space where I feel like I can say, however much or however little I want. I can sit with it for a couple of days and edit it before I hit.

Cheryl:  49:11

Yeah.

Stasha:  49:13

So, I know how much I really wish to share. And other than that, so I did the first post that was very personal. And then, like a good scientist, I hid behind the information for a while. And it’s really been just dribs and drabs of, okay, honestly, this is what’s going on with me personally, rather than things like I tried these things and they feel okay. It’s more, you know, okay, this this part of my life is really not so sunny, and this is a place where I’m struggling. I’m starting to be a little bit more open with that sort of stuff. And starting to dig into some of the parts of the healing journey I’ve been on that I haven’t really shared because it’s pretty easy to share the medical stuff, pretty easy to say you got to ask for help, got to advocate. So, talk about stress management and exercising and stuff like that. 

It’s harder to talk about managing my anxiety, my expectations of life, adapting to the reality of now versus what teenage me thought we were probably going to be doing at this point in my life. I’m managing my expectations about the things that I can get done in a day. Obviously, comes up and down unpredictably. And I never really know. It’s been a really helpful outlet for all of the different types of things that I try to do. But there’s more. I’ve done a lot of work around trauma; I’ve had a lot of complex experiences in my life. And so, a great deal of what I’ve really had to work on is self-love, trust, rebuilding trust in self, rebuilding trust in the medical community. Learning to stand up for yourself when you’ve had a traumatic existence is a little bit of a tough thing in the first place. So, just that first step, that step when I told my doctor after not telling my doctors for so long, “I think this is what I need.” That was a big thing. But I’ve never said that on my blog. I haven’t quite gotten there yet. But it’s coming.

Cheryl:  51:56

Yeah. And that’s definitely, you know, there’s sometimes when you start sharing your story — I don’t know how much I’m projecting here — but you can feel like I what I feel like it’s a pressure sometimes to share everything. But, you know, because you know that could help someone, you know, everything that you share is going to help someone, but you do have to — this is me not practicing what I preach, but I’m going to just preach to, you know, do it on your time on your schedule when you’re ready. Because this is the paranoid anxiety side of me, but because you never know how people are going to take your words, and they could twist them. Unfortunately, we’ve seen with kind of media coverage. And so, if I am, you know, my mom, she listens, and she’s, you know, she’s looking out for me. And so, she’ll be like, you know, “Do you’re sure you want to say X, Y or Z because what if, you know, what if your insurance company hears and they come back, and they’re like, well, you, you know, whatever X, Y, Z, potentially bad thing.”

That’s the definition of anxiety. It’s not like a specific thing. It’s like versus fear. But I appreciate you even taking the time to share even just that. Not even, not the specifics, but that you’ve had trauma in your past, and that that’s something you’ve worked through. And I think that that’s so many people, again, still feel a stigma about talking about it. So, yeah, especially for someone like me who’s like, “Hi, I had no trauma, yet I’m still messed up.” No, but like, I found my way towards anxiety despite having no, you know, but I mean, I’m totally humor is one of my coping skills. So, sorry, not making light of it.

Stasha:  53:38

Yeah, one of mine, too. I have a dark and twisted sense of humor. It rears it’s head often.

Cheryl:  53:46

There’s a reason they call it gallows humor, right? Nurses, anyone who’s seen difficult things, experienced difficult things — not anyone, but most people, you know, use humor at some point to cope. So, you know, I think that self-love, you know, self-love is hard enough for people who had no trauma in their lives, too. It’s a much bigger battle, I’m sure, for you. So, that’s wonderful to hear that that’s kind of, it sounds like that’s become internalized. So, you know.

Stasha:  54:14

It has. I’ve come to a place where, in some sort of a twisted way, I’m kind of thankful for RA, for sitting me down and making me get to know myself. And listen to myself, and stop trying to just push forward and run away from all of the things that, you know, bad things happen, and you just want to just go on. Okay, leave it behind me. I’m just going to keep walking. And you pretend that it didn’t impact you, but everything that happens to us impacts us in some way or better. And RA kind of put me in a place where I had to sit down and deal with all of that and learn not to be a people pleaser, and learn not to put everybody in front of myself, and learn that it’s okay to ask somebody for help. They’re not going to freak out on you. You know, just a lot of small but big things. And one little baby step at a time. That’s, that is my philosophy in life, I do nothing in huge leaps. I take small steps. And if that’s not going to get me there, then that must not be the path I’m supposed to walk down on.

Cheryl:  55:37

I love that. Well, you already answered one of my rapid-fire questions, which is do you have a favorite mantra or inspirational saying? So, it sounds like do nothing in huge leaps, small steps. I love that. That’s beautiful. Do you have any specific like words of wisdom or messages for somebody listening who might be newly diagnosed?

Stasha:  55:59

Don’t — try not to be overwhelmed. I know it is absolutely overwhelming. But try just to take it one piece of information at a time. Approach it one day, one small change at a time. And you will start to feel better. If you don’t start to feel better, make sure your care team knows how you’re feeling.

Cheryl:  56:24

Yeah, huge. Huge. Do you have a — oh, and oh, actually, I’m gonna add to that from my own delusional optimism history/stubbornness, stubbornness, which is do not try to delude yourself that it’s going well when it’s not.

Stasha:  56:40

No. Don’t. Be honest, first with you, and then with other people. Don’t struggle to open the water bottle. Hand that on to somebody and ask for help.

Cheryl:  56:52

Yes, yeah. Yep. A hundred percent. And do you, speaking of opening things, do you have a favorite arthritis gadget or tool in your toolbox? Literal, physical, or metaphorical.

Stasha:  57:03

Um, favorite tool? Oh, my God, I have so many different tools that I use. One of my favorite things, actually, is That Tape because you can wrap that on anything and make the handles fat.

Cheryl:  57:19

What did you call it, what kind of tape?

Stasha:  57:20

That Tape. That Tape. It’s like a special sports wrap.

Cheryl:  57:25

Yeah, yeah, sports tape, I have some of that. I just didn’t know if that was a specific brand.

Stasha:  57:30

No. My first physical therapist — well, my first very useful physical therapist since I had RA that knew what was going on with me — she was a horse person. So, she had That Wrap. Which, yeah, the other one would probably be the Kitchen Mama?

Cheryl:  57:54

Kitchen Mama. I just used that last night making Mexican food. Yeah, Kitchen Mama hands free opener. 

Stasha:  58:01

That is amazing. 

Cheryl:  58:02

Yeah. And it’s cute. And you can put it in a drawer. It doesn’t take up space on your counter. Yeah, it’s a can opener. If you’ve seen my blooper video, I continuously called it a jar opener. [Laughs] I keep saying jar, but I mean can opener. Can opener. Okay. It’s a can opener. Yeah. Do you have a favorite book, movie, or show you’ve been watching or reading recently?

Stasha:  58:32

That’s hard. I watch The Office over and over and over again. So, that’s probably —

Cheryl:  58:38

Comfort show

Stasha:  58:38

One of my very favorites. Yeah.

Cheryl:  58:40

The British one, or the US one?

Stasha:  58:42

US.

Cheryl:  58:43

Yeah, the first one’s really good, too. I had that on DVD.

Stasha:  58:47

So, ‘Shameless’, would probably be my favorite British show, and I like the British version of that.

Cheryl:  58:52

Okay, I’m gonna write that down. And then, lastly, this is a big one, but what does it mean to you to live a good life and thrive with rheumatic disease?

Stasha:  59:05

It means that I get to enjoy living my life. And for me, that is getting out in nature, having the energy and the attitude to interact with my loved ones, and enjoy time out. It’s really important to me that I can spend time on boats, go camping, things like that. So, those are the things that I’m always looking to level up a bit more.

Cheryl:  59:38

I love it. I really want to come visit Maine.

Stasha:  59:41

You should. It’s beautiful.

Cheryl:  59:44

I am on the opposite coast to you. But I’ve been as far north as — oh no, I did go to Maine. We visited Bates and Bowdoin when I was looking at colleges. Yeah.

Stasha:  59:55

And I spent summers at Bowdoin when I was a teen.

Cheryl:  59:58

I loved the campuses, yeah. And then, last, last question, where can people find you online?

Stasha:  1:00:06

They can find me on my website, tenaciousme.org is where I do all of my information sharing, and on Instagram and Facebook at @TenaciousInMe.

Cheryl:  1:00:21

Perfect. Well, thank you so much for sharing so much wisdom and dealing with all my rambling or questions at times. It’s just really nice to talk to you and I, you know, to anyone who’s listening to the audio version, I always like to remind you that there’s also a video on The Arthritis Life YouTube channel, and on my website, arthritis.theenthusiasticlife.com. You’ll also find a full transcript. I personally actually find it hard to retain information when it’s auditory only. So, I like to read it if I’m trying to really, yeah, so that’s always, transcripts are always on the website. But thank you so much, Stasha, and we’ll talk to you later.

Stasha:  1:01:02

Thank you.

Cheryl:  1:01:03

Thanks. Bye-bye for now!