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Episode christy
Blog, Podcast

Life with Arthritis is a Marathon, Not a Sprint: Christy’s Story

February 4, 2021
63 min read
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Episode Summary:

On Episode 24 of the Arthritis Life Podcast, Christy Williams shares her inflammatory arthritis journey going from needing a wheelchair to completing two ironman triathalons.

She and Cheryl also discuss reflections on motherhood with RA, how they achieved acceptance and manage their attitude towards the disease, and how they navigate difficult conversations within the chronic illness communities online.

Speaker bios: 

Christy Williams is a certified health coach, wife, mother of two and endurance athlete/triathlete. She has been living with an autoimmune disease called Sero-negative spondylarthopathy (blood negative inflammatory arthritis) since the age of 24. She is now 48 and has been in remission for 15 years due to a combination of Remicade (a biologic disease modifier) and an active healthy lifestyle. 

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. She is passionate about helping others with rheumatoid arthritis thrive despite arthritis. She formed the educational company Arthritis Life in 2019 after seeing a need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources. 

Episode links:

Show Breakdown: 

  • 01:00 – Christy shares her diagnosis at 24 after the birth of her first child, and her transition into adulthood. 
  • 03:20 – Christy’s tenacious drive to stay active, her journey completing an ironman challenge. 
  • 5:35: How Christy has managed her inflammatory arthritis over the years: it’s a marathon not a sprint! How she went from being in a wheelchair to completing triathalons after figuring out the right medication and lifestyle interventions such as exercise.
  • 8:00 – Christy explains how fatigue still affects her quality of life, and how she copes with it by pacing herself.
  • 13:05– Christy shares why and how she became a health coach for people with autoimmune disease, after she achieved remission. 
  • 20:30 – How having an autoimmune disease sparked Christy and Cheryl to confront their mortality.
  •  23:10 – Christy’s definition of “remission,” and additional reflections on the fact that no two paths towards remission are the same.
  • 30:10 – Cheryl and Christy share different debates and challenges within the chronic illness community, including medication shaming, or shaming of people who celebrate natural methods.
  • 34:40 – Cheryl reflects on how she’s tried to strike a balance between celebrating how well Western medications have worked for her and also respecting others’ choices if they differ, and how patients within the chronic illness community can unite in our common goals and consider the intent of our messages when we communicate our journeys.
  • 36:00 – How Christy & Cheryl cope with unsolicited advice.
  • 38:00 – How Cheryl’s therapy helped her cope with uncertainty and gray areas during treatment for RA.
  • 41:25 – How Christy has managed her attitude and mindset during the ups and downs of life with inflammatory arthritis.
  • 43:38– Cheryl shares how Acceptance and Commitment Therapy transformed her relationship to uncertainty as a chronic illness patient, and how anxiety makes you want black and white answers and certainty.  
  •  50:00 – Common misconceptions and myths around arthritis and remission.
  • 54:27 – Christy’s advice for anyone battling chronic illness and her best coping mechanisms dealing with uncertainty  
  • 57:00 – Christy’s pre-diagnosis challenges with people not believing her.
  • 1:03:00 – The importance of sharing our stories, even if we get criticized or misunderstood!

Full Episode Transcript:

Interview between Speaker 1 (Cheryl) and Speaker 2 (Christy Williams)

[Introductory music]

Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started. 

Cheryl:   Okay, so, I’m so excited, Christy, to have you here today. Can you let the audience know just a brief introduction to you, where you live, and what’s your relationship to arthritis? 

Christy:  Yeah, for sure. Well, thank you, Cheryl, for having me on. I’m really excited to have found you and to be able to share my story today. I live in Littleton, Colorado, right at the foothills of the beautiful Rockies, so we have some snow out there today, super fun. My journey with RA, yeah. It’s a long one, an exciting journey I can say. It started at 24-years-old, super young. Very hard to come to grips with a diagnosis like that. It was after the birth of our first child. So, I was thinking, “Wow, if this is what having a baby feels like, I’m probably going to be done with one,” because everything was kind of falling apart. I felt like I had a fever. I was tired, which, you know, you’re gonna be tired after you have a baby. There were a lot of other things happening that were so unusual. So, that’s where it started. And now I’m 48, so I’ve lived with this for that many years. It’s been a hard journey with some really good lessons and some good takeaways throughout it, for sure. 

Cheryl:  Yeah, and did you have any more children or no? 

Christy:  Yeah, we have one more, so we have a girl and boy. They’re both in college now, so. I was fortunate. I was really hoping that I’d be able to have a second, and that was, you know, as you know, we get involved with figuring out what’s going to work with us with medication. I was worried if I got on something right away I wouldn’t be able to have another baby just depending on what I was taking. 

Cheryl:  Totally. And just for those listening, the medications that are considered safe for pregnancy, it has changed a lot in the last three to five years. They used to be really conservative and say, you know, don’t take anything. And now actually the vast majority of rheumatoid arthritis medications are considered safe. Now this is, of course, talk to your doctor. This is not medical advice, but just saying that there’s been a shift because of more research being available, but back then, yeah, 24 years ago…

Christy:  Absolutely.

Cheryl:  It’s striking to me that you have now lived half of your life without rheumatoid arthritis. You’re at the exact half point where you had half your life without and half your life with. Wow. I also want to talk about another dimension of your experience, which is exercise. It’s a big part of your life. How did you get involved in exercise? Were you athletic prior to your diagnosis?

Christy:  Yeah, absolutely. I grew up an athlete. I absolutely loved being outdoors, and I was just always outside kicking it around, getting dirty, and played sports in high school, running. I ran cross country, track, played basketball. Absolutely a love for it. And I think that when you do identify as an active person, and then you have this diagnosis, it’s literally almost challenging your identity in a way, right. 

Cheryl:  Oh, completely. I know with the episode with Randi, @RAwarrior_Randi, she talked about that a lot. She was a college track and field athlete. I was captain of a software team in my college when I got diagnosed, so I totally identify with that. Yeah, it’s hard.

Christy:  It’s super challenging and it’s not something you’re ever thinking when you’re young, that you’re gonna have to face in your early 20’s, I’m sure. So, fast forward a little bit. When I was married and started thinking about starting a family, I also had this big goal injury to do an Ironman Triathlon someday. I’ve always been intrigued by that by seeing it on TV, and I wanted to do it, but that got put on hold when all of this started to go south. So, it’s a really neat story that I can share in a nutshell, but triathlon actually became part of my rehab. It’s perfect cross training — swimming, no impact exercise, biking, same thing. Running, I started with a walk because my doctor did tell me, “I’m not sure you’re ever going to run again,” and I took that as offensive. I was like, “Okay, I see that now, but let’s wait and see.” So, I actually used that triathlon mentality to get back to health. Again, and I had no idea that I’d actually be able to fulfil that dream of becoming an Ironman, but I did twice. It’s a full circle thing and I am grateful for the sport, and for all of the advancements we’ve had to be able to get to being strong again. 

Cheryl:  Yeah. Yeah, and I think I’m anticipating the next question on the audience’s mind which would be, how are you managing your disease to where this is possible? Yeah, and what do you do — what’s your secret sauce? 

Christy:  Secret sauce? Well, I honestly think that like a marathon or any long distance pursuit, whether it’s sport or just life in general, if you look at parenting for example and you just look about like, “Oh, I want to raise this kid to graduate from college,” and you see the big picture, it’s overwhelming, right. So, same thing with progression of our health with this disease. You have to take it in baby steps. So, the whole long journey of getting the right diagnosis and finding the right treatments for me was a long few years process in itself. Once I could get that under control, though, I just started with goals; small goals, I want to be active again. That was it. I don’t know what that’s gonna look like, but I’m not willing to shelve it. I’m willing to fight for it. And so, getting in the pool — and no, I did not start a swimmer, by the way. I was not a swimmer growing up. So, I had to kind of learn that, but new challenges are also really refreshing, right. So, I just started walking into that, “What do I want initially and right now?” just to be active again because I hadn’t been able to for a number of years. As we all know, I mean, this thing — I was in a wheelchair at my worst. 

So, starting from that extreme at the Mayo Clinic thinking, “I hope someday I can walk and run, maybe,” I just started with that dream, and goal, and purpose, and wasn’t willing to give up on it. And I really didn’t know how far I would get. I know like any step I took was going to be better for me than if I didn’t try. 

Cheryl:  Right. And has it fluctuated over the years? Like, for example, not to be like ‘for example, myself’ but, you know, I’ve had times where my disease was really well controlled and I was swing dancing, and I remember I used to play soccer on like a rec soccer team, you know, post diagnosis. And, you know, be quite active, and then there were other times where I’ve had to scale back. Has it been that kind of up and down wave journey for you too? 

Christy:  Absolutely. It’s not all roses and rainbows for sure. One thing that we all deal with is fatigue. And I’m not sure about everyone else but me personally, even though I am at a pretty good level of remission, I still — I mean, the fatigue doesn’t go away. It’s always there. And so, just, yes. I have to really pace myself. There’s times when I’ve trained a little bit too much, right, we always know like, “Pace yourself,” I’ve had to really work within that within myself and know if I need to step away, because — and I always tell this to athletes I coach too, if they’re even just healthy runners, I say, “You need to know when to pull back, because your body can only take so much training to absorb that. You need to sit back and just rest,” and it’s so true. Like, whether you’re healthy or not we all need to honor the rest breaks. I think living with this kind of condition forces you to be hyper-aware of that. So, yeah, it’s been kind of more of a roller coaster than a straight line, but, again, just not giving up on the bigger picture and being willing to ride that wave is what can keep you in the game. 

Cheryl:  I love that and as a former runner — I’m saying former runner. Part of my identity would be definitely like I still consider myself an athlete, because I will carry all the lessons I learned from being an athlete, you know, to the future, and I hope that I can get back to the point. It’s actually my neck is the issue with running now because I was in a car accident and it’s — any sort of up and down bouncing is really, the last frontier of my neck recovery. It’s hard, but anyway, I should actually — now I’m trying to think, oh, what is it called, the bi-athalon, the bicycling and swimming I could probably do. But anyway, I really love that analogy of like the balancing, you know, your hard training days and maybe balancing like an endurance run with a tempo run or an interval run, where you’re doing bursts of speed and then alternating things, and then alternating that with rest. I think that’s one of the most confusing areas I see with a lot of patients, especially newly diagnosed because we tend to give people that education that ‘motion is lotion’ for arthritis joints, you do need to have some amount of movement, but the fatigue can can interfere and make you feel like, “Wait, I don’t even — am I supposed to just push through this if I’m feeling really fatigued?” and what’s really confusing is that, as an occupational therapist, I’ve looked at the research and exercise has evidence to help reduce fatigue, but if you push past the point of your kind of ‘just right’ zone, then it could cause worse fatigue. So, I guess I’m making the case for having health coaches, or occupational therapists, or physical therapists to help patients sort through this, because do you also find with your clients this is really confusing?

Christy:   Absolutely, and I’m always amazed and shocked, but not surprised. I think the parallel between working with chronic condition patients or members that I have with the healthy population, and how exactly similar it is that you have to listen to your body. I’m really more conservative as a coach, because you can get much farther in any pursuit if you’re honoring your body first and the small tiny steps over time. I always say, you need to kind of try not to do those hero efforts and I know we know about that, all of us living with that. If you have seven days in bed, and you’re like, “Oh, my gosh, I have so much to make up now,” and you’re like, “Okay, I’m feeling good. Today, I’m going to do 100 things on my list.” That’s the hero day and you’re going to then have to pay for that, right. So, it’s breaking it up into those small digestible moments, and a little bit over time takes you so much farther than one big exclamation point. 

Cheryl:  Yeah, totally. Yeah, and it’s hard if you have lived a lot of your life as kind of a, ‘hey, just keep going till you’re burned out’, because that’s kind of how I was, right, I would just run until I couldn’t run anymore and then you could recover when you’re younger and when if you’re completely able-bodied, you can kind of push through. But then, to a certain degree. You’re right that every, you know, able-bodied people also reach their limits. But yeah, chronic illness definitely teaches you to pay attention to your own bodies. 

Christy:  Yeah, I mean, it’s easy to say this when you’re on the other side of that just hard, hard work of getting diagnosed and finding the right treatment for you because it’s exhausting in itself. But when you are on the other side of it, and you will get there eventually, it’s really hard to say like, wow, you don’t regret the lessons you’ve learned. Learning how to pace yourself, and enjoying those simple things, and not having to just plow through the brick wall all the time in life makes your life that much richer. So, you can apply those lessons to the other side of when you get this under control. There are some benefits to be able to have that perspective. 

Cheryl:  Totally. Oh, my gosh. I’m curious, when did you become a health coach? What was that process like? 

Christy:  Okay, thank you for asking. That was absolutely driven by — this was after the fact after I reached achieved remission, which I think we’ll probably talk about in a little while — but when I got in control of my own life, and realizing that at my darkest point — five years of just not doing well, being alone, feeling so alone. And I remember, just like one prayer or wish to the Universe was, “I just — if I ever get on top of this, I promise I will be that person to help someone that doesn’t know how to find their way through this dark maze,” and so.

Cheryl:  You’re giving me chills. That’s so beautiful.

Christy:  I try not to get emotional because —

Cheryl:  No, that’s so beautiful.

Christy:  It’s, you know, this is the hardest thing we might deal with in our life and it doesn’t go away. So, it’s pretty — it’s hard. But I just wasn’t — I was just so driven to be able to find people. And I’ve told my friends and co-workers all the time, “Hey, if you ever know anyone that’s experiencing these symptoms and they don’t know what’s going on. I’m not a doctor and I’m not going to diagnose you, but I can tell you that, hey, these are things maybe you should look into. And, at any rate, you’re not alone.” And so, that’s kind of how it came about. 

Cheryl:  Yeah, did you have to go through a program or —? 

Christy:  I went through — so, I have a personal trainer certificate too, and I went to Dr. Sears Wellness Institute to get my health coach certificate, and just kind of bundled them all together, because the health coach side of things is really how you’re helping people navigate. You’re not telling them — it’s not like a prescription, not necessarily, it’s helping them navigate through that emotional mess of what gets us stuck. There’s a lot of places to get stuck with this illness, and so anytime I can help someone get around those obstacles is what I’m really passionate about doing. 

Cheryl:  And this is probably obvious to everyone else but I just made the connection of the metaphor of coaching. Like coaching sports, versus coaching chronic illness. I was like, oh, my gosh, because I’ve thought about this for myself too. Like, exactly. I mean, I’m just gonna reiterate what you already said but like that, you know, that — I don’t like the metaphor of ‘battling’ necessarily but, you know, you have to make a plan — like when I was on the soccer team, we’d make a plan for our opponent, right, we might have to adjust the plan given the different opponent, and you have to coordinate with other people, and you have to prepare the best you can. But then, the game day comes and you just — it’s like, there’s always metaphors, right. So, anyway. 

Christy:  Yeah, I love that.

Cheryl:  Yeah, and the coach is like, not playing the game for you, right? Like, as a chronic illness patient, you are the ones at the end of the day living this disease 24/7, but the coach can give you those — they can give you that perspective. When my coach sits on the sideline, I was always defender in soccer, so I was always at the back. So, I could see a lot of the field, but the coach could kind of say, “Okay, you were a little bit too far to the left there, too far to the right,” or, “I’m noticing this kind of weakness.” They have that perspective but at the end of the day it’s my job to actually take those lessons and implement them, and it’s really empowering to empower patients. I know in occupational therapy and physical therapy, you know, like, I will say some people are kind of like grumbly or grumpy about health coaches and life coaches, and I get that there can be a quality control issue, which I’m sure you’re aware of, you know, people being like, “Oh, just do this and you’re gonna like be cured forever,” you know, and there’s no like licensing boards. So, I get that it’s a complex issue but I’m like, what can we as health professionals learn from these models which one of the things is that people need a coach! They want to be coached.

Christy:  You want that person in your corner that, first of all, maybe has been through it themselves, and has learned some behavioral — or a leg up, maybe, in figuring your own stuff out. Because you’re right. At the end of the day, you don’t tell people — we don’t want to be told what to do. We want to figure it out for ourselves. 

Cheryl:  Yeah, it’s such a great — and I will say just for the record, I think most of the people in the audience are patients, but I know that there’s OT’s that are gonna say, “Well, we can use coaching as part of our OT therapy technique,” which is totally true, but, um, you know, I think that — I don’t know if you’ve ever heard like the doughnut hole analogy, but it’s used for things like access to services. It’s, for example, there’s people who if you have very, very severe disabilities, you’re on one side of the doughnut, and you get services, and you get supports. If you’re totally able-bodied, you’re on the other side. And there’s this hole in the middle of people who are like, you’re sick, not able-bodied enough to do the things that an able-bodied person should be expected to do, but you’re not sick enough to qualify for disability, so you get missed in the middle. And I really think that people with chronic autoinflammatory diseases or autoimmune diseases like rheumatoid arthritis, they kind of a lot of times now with the modern medications, a lot of patients fall into that middle. We’re not having severe joint deformities, or severe, you know, impairment, so doctors don’t necessarily think to refer to other professionals to help, but it still massively impacts your function and your ability, your quality of life.

Christy:  Yeah, it’s so frustrating. I haven’t heard that analogy but I love it, and I completely relate to it, because I have tried to bring awareness to that void that we find ourselves in with racing. I’ve wanted to enter some races because I could as a challenged athlete, I mean, absolutely you’re like — I’ve been in a wheelchair, I’m not normal. I have them, our number one nation’s cause of disability. But people will judge you or because you don’t really fall into a category and because you can’t see it with us necessarily as something labeled or categorized. And so, I feel like we kind of just get brushed under the rug a little bit sometimes. 

Cheryl:  Yeah, I think that’s really fascinating with respect to like adaptive sports or, I don’t know what the perfect phrase for it is, different, you know, challenged athletes’ sports. That’s a perfect analogy. I know with spinal cord injury, there’s these really fascinating rating systems. So, for example, if you have a wheelchair basketball or adaptive basketball team, because spinal cord injuries can differ drastically between the different cervical, thoracic, or lumbar level, they try to make the teams, kind of like — they give people ratings in terms of how severe that disability is, and then they don’t — so, you can’t stack a team of all people with like miles for all people. So, it feels like with rheumatoid arthritis there definitely should be a way. And I know that there are people who are fully qualified under disability, who get disability payments and such in the United States, who have rheumatoid arthritis so it certainly is considered, you know, a disability if it’s severe. But there’s a huge spectrum! There’s people like you who are currently able to — yeah.

Christy:  Like, I tell people, I think — okay, so we’re all on borrowed time, right. I mean, none of us are getting out of life alive. We don’t know our time on this earth, but I think you become more hyper-aware of your time when you have good years with us. So, I am under no illusion and I think that’s what drives me to just do as much as I can, like a crazy lady, because tomorrow it might be gone. This medication and treatment I’m on right now, it might not last forever. So, I am very aware that this could end and I want to take advantage of every day that I have, you know.

Cheryl:  Oh, my gosh. We’ve literally never talked before, but like everything you’re saying I’m just like, yes! Preach!  I think that’s such an important point. And it is like when — I got diagnosed at age 21, and I’m 39 now. So, I’m almost at my half point of, you know, living half my life with it. But I specifically remember thinking about that. Like, I never really had considered my mortality in vivid terms before then, and it was like, you know, I had this kind of very — and this is going to lead to another point we want to cover, but I had this kind of like, you know, good things happen to good people and I was very careful about what I ate, and what I wasn’t. I was careful as an athlete, you know, right. I never did drugs. I was very like, you know, careful, and then this thing still happened to me. But that’s life, right?

There are people who, you know, smoke, their whole life and they don’t get lung cancer. And there was like my 40-year-old choir teacher who was the most healthy person and she gets lung cancer. That’s just life. There’s a randomness to it. And so, having to confront that at a young age gives you perspective. 

Christy:  Absolutely. And that goes back to what I was saying, and I would have — if someone had told me this when I — for any listener out there who’s in the throes of the most difficult time right now — if someone were to say this to me then, I would be like, “Whatever. I don’t want to hear that right now,” but the lessons involved with that kind of pressure on you that you can apply on the other side of this make your life that much sweeter. I mean, I wish I didn’t have this. I wish you didn’t have it. I wish it would go away. But it’s made me aware of like, you just see everything around you in vivid color, and you don’t want to waste moments. And so, if any of us can live in that way, that’s huge. 

Cheryl:  That’s so beautiful. You’ve mentioned remission a couple of times and I did want to take a minute, because remission is a very confusing word for a lot of patients. And, again, it’s yet another thing that most people never get educated on by their doctors or medical teams. So, how do you personally define remission, and how has your medical team defined it?

Christy:  Yeah. So, that is, I think it’s kind of not a black and white thing for sure. I think for myself, and this is just personally, at some point I just didn’t think that was possible because I tried and failed. I should say this right now, I tried and failed every medication that was available to me. Like years of, you know, it takes like, what, six months to see if a lot of these disease-modifying anti-rheumatic drugs work. And so, during that process of failure, I also tried a lot of functional, nutrition, and all of that stuff, which was really educational. But going back to remission, it wasn’t happening very quickly for me, so I thought that was a term for other people. But I started to see that as I started to gain some traction with my therapies, my medicine, everything I was doing, I thought, “Okay, remission is at any point I can sort of get a life that feels manageable, that I can do the things that I want to do,” at the time having two little kids, that would be, “Just give me enough time to raise my kids and being an active mom,” it doesn’t have to be that perfect mom. I don’t have to be Martha Stewart, or be like a perfect mom, but I want to be available to be present with my kids. So, that was kind of the first marker for me, and that’s why I say, you know, just small goals of how you can be. Like, where you feel personally that you manage your disease is remission at any point. 

I mean if you get to that point that you’re managing it, that’s a huge accomplishment on some level. And then, I mean, medically, I think it’s defined — and you can correct me if you think this isn’t right — but I think it’s where any symptoms or any appearance or bloodwork of disease isn’t present anymore. That’s not to say like, for us, for me, it’s not like, “Poof! It’s gone,” and now I don’t have to treat it anymore. No, I’m still doing the same infusions every month. But the disease is manageable and I’m able to be active and run. And, you know, my running, it doesn’t feel perfect. It’s not a perfect thing. I’m just making it work.

Cheryl:  And what — do you mind sharing what medication you’re on, just ’cause I know people are gonna want to know. You don’t have to, though. 

Christy:  Yeah, sure. Like I said I went through and tried and failed all the disease-modifying drugs; methotrexate, all of them. I went to biologics, which are Stelara, failed that; Enbrel, failed that; Kineret, failed that. So, that got me to Remicade, and that was the magic bullet for me. I mean, I was on a low — like, the starting dose and gosh, I mean, after so many years of feeling just terrible, I remember just the next day, being like, “Something feels different, there’s a weight lifted,” that took my doctors down the path of figuring out the right dose, and the right frequency, and all of that for me. It was amazing and it was like, I tell people the absence of pain is a feeling in itself. 

Cheryl:  Oh, my goodness, yes. Mic drop. People don’t realize that. If you’ve always lived without pain, you don’t realize that the absence of pain is a presence.

Christy:  Good, it feels good. That’s something I started feeling and I thought, “Okay, well, to whatever degree this continues, I’m happy.” And so, then that’s where it got the ball rolling, right. You just need like one breakthrough of some kind. Going back to that exercise, I couldn’t even exercise for myself because I couldn’t function well initially. And so, once we got towards — we opened that doors toward, okay, this might lead to some level of remission, awesome. I was like, on board, and just ready to grab ahold and start exercising because I know that would help. Who knows? But it’s good for you, and your mental health too. So, I’m still on that. I’ve been on it for 12 years.

Cheryl:  So, yeah, Remicade worked really well for me too, but then after my pregnancy, I had it, I was on it. At the time, I was advised to stop it midway through the pregnancy. And then postpartum, it never worked. Unfortunately, some of these, when you’re pregnant, your immune system changes and sometimes the same biologic that worked before doesn’t work again. But I felt really good when I was on it. But again, this is not to say that because both of us had a good experience, everyone else will. I did really well on Enbrel too, but you didn’t do well on Enbrel, so it’s so individual. That was what I was kind of trying to piece together, like how long you had been on a biologic. So, that that makes sense. In your mind remission is kind of like a state where you’re able to function, like your basic functions and daily life without — 

Christy:  Absolutely. I mean, I think that when we all have faced this diagnosis and you absorb what that means and how scary your disability limitations can be for you… The ability to get around your house, well, I mean, I couldn’t get up. My husband was carrying me up the stairs. I had to call friends to take my own kids to the school. Those are things I don’t want to have to do. So, any level of just being able to be independent at some level, to me, is what I would say is like Remission Chapter One. And it’s a great thing. I would have been grateful just to stay there, because I could have raised my kids, I wasn’t in that much like excruciating pain, limited range of motion, and all of that. So, I think that’s the first step and hope that you can work towards, for sure. 

Cheryl:  Yeah, yep. And, you know, there are ways that that doctors can kind of give you a hint as to how severe your disease is. It’s a complex equation between the severity upon your diagnosis, plus your own unique personal and family medical history, your physical exam, and then the amount of years you’ve had it. That will help them give you a personalized prognosis for how likely remission can be for you. And I think that we had talked previous to this episode about, you know, there are so many misconceptions even in the community of people with the same disease. I loved what you had said to me previously. You said, “It’s important to realize no two people, no two diseases or ways to remission, are ever the same. And one is not better than the other.” Would you like to expand on that a little bit?

Christy:  Sure. Also, that’s an emotional thing for me because it’s been hard. I try to share my story. When you’re sharing your story, you’re vulnerable, and when you — I never thought that going from wheelchair to Ironman triathlete — I was so naive and thought, “Wow, people are gonna think what a great story, and if she can do that, like, I can do some level of progression,” but what I saw was a lot of judgment about, like, “Oh, well, then you’re really not that sick if you got to that point,” or, yeah, judging the disease, like, “You’re not that sick.” It’s like, well, do you want to go through the archives of how long it took me to get here? It’s pretty bad. And so, that was really frustrating. Yeah, just dispelling the myths about, you know, I was naive. I really didn’t understand that people were gonna be harsh about if you took medicine or you didn’t; or you only tried nutrition or you didn’t; or you got this far in remission or you didn’t. I was just very disappointed and discouraged by that in the community or just outside the community too. That’s something I’m really passionate in life. 

I reached out to you and I’m gonna keep trying to reach out more, is to get people to understand that it’s not a straight line, and these things we deal with are amazingly — they really, really threaten your lifestyle. So, we should be open to sharing ideas and absorbing what everyone can say, and then finding out what works for us in that way, and and being excited for each other’s accomplishments, you know, because this is a hard thing to live with. And if we can’t be in each other’s corners living with it, or celebrate our successes, or really mourn with people who are not there yet, I mean, that’s just so important. 

Cheryl:  Yeah, and when you said the community, and just to make sure the audience knows that we’re talking about the chronic illness community, right. There’s the chronic illness community on social media and in person, and there’s a lot of nuance to what you were saying because — have you ever heard people talk about the ‘Chronic Illness Olympics’, where it’s like a joke about people — what people say is like the ‘Complaining Olympics’. Like, “Well, I have deformities on my right hand”, “Well, I have deformities on both hands”, “Well —” and again, those each experience is so valid, you know, like, no one wants to have this disease, no one wants to have symptoms. Everyone wants to feel good, right. It’s kind of a human thing. We want to feel good, we want to feel well. 

Christy:  Yeah, we don’t need to be comparing our level of disability or — I don’t understand that and I really want to work hard to kind of dispel that because, yeah, your pain is your pain. It’s valid, and it’s big, and it’s a big deal. And if you were made to feel that way ever and then you disengage from the community, that’s not helping you. 

Cheryl:  Right. And I think one thing that I had not even really realized was so prevalent until I became more active in social media was medication shaming. You know, I’ve done videos on this, and people saying — it comes from the outside. Somebody who doesn’t have a chronic illness and doesn’t know that much about it, like your friends or family; and it can come from within the community like, “Oh, well, you shouldn’t take those scary drugs,” or, “You shouldn’t do this or that,” and it’s really complicated because it’s easy to say, “You just need to stop shaming people, that’s really bad,” but we have to look at what’s the intent behind the communication. For example, if someone says to me, “Oh, you’ve been on methotrexate for like 18 years, except for when you had your baby. I’m concerned about you because I’ve heard of these side effects. Do you know about that?” like, again, their intent being like, “I want to help you. I care about you,” versus someone saying like, “I want to feel good about myself because I’ve managed my disease with natural methods, and I’m going to brag about it to you.” They’ll be like, “Oh, well, you should —” I literally had someone be like, “If you haven’t tried cutting out dairy, gluten, sugar, and something else, like, you can’t say that none of the natural ways work,” or something, it’s like… 

Christy:  Yeah, I mean, I’m laughing because it’s familiar, but yes. 

Cheryl:  Yeah. And I mean, I think I — I’m a middle child. I’m like a peacekeeper, like a consensus finder. And I almost feel like as both a patient and provider, I’m trying to be the bridge between, you know, both perspectives at times. I try to be really open, because like, for me, the Western medicines are so effective that like when the pandemic started and I had to wait a week, an extra week, for my Orencia — it got delayed — I felt symptoms every day, noticeably. It’s like my body is used to that and that’s what works, but I also know people whose very valid and real experiences are that their body couldn’t tolerate the biologics or the DMARD’s — the disease-modifying — and they went on a diet and it was amazing and life changing for them, and I’m not going to be like, “Well, because the medicines work for me, you shouldn’t go on your —” like, obviously, I want everyone to be happy and feel good. Anyway, sorry, now I’m going a soapbox.

Christy:  Absolutely. No, I liked it. I’ve never thought, I mean — I feel like I should know better — but I’ve never thought about that, the intent of the message, and I think that’s a really healthy way to look at it. And definitely give people grace. But when you’re already dealing with something and you’d have doubts yourself, when someone’s putting doubt in your mind extra, it does not help. You know, I’ve had someone say, “Oh, well, great, I’m glad Remicade works for you, it doesn’t work for me,” I’ve had that a lot and I like — I don’t understand the purpose of that message. I mean, I want something to work for you, and I don’t care what it looks like. Being concerned for each other is great, and you can always ask, like, “Have you heard about this?” first as a leading question, so you don’t come in and attack someone with information that’s probably already learned and read so much that they’re overwhelmed, right. It’s like asking, “Have you heard of this?”

Cheryl:  I’ve been thinking about this a lot and the things that I’ve come up with for myself, or that my recommendation is actually before even saying, “Have you heard of something,” because even that information can be overwhelming to the person, is to say, “Oh, are you open to some suggestions or ideas?” like, “I know some people who’ve had this too, or is it just going to overwhelm you,” because I think that recognizing that information, that conflicting information, is so overwhelming to people at the beginning, that even throwing out more information — and I know I am guilty of this, because I go on social media and I want to help everyone, you know. I’m like, “Oh, have you heard of this,” and I’m like, wait a minute, they might not even want me to ask them that right now because they just want some peace about what they’ve decided.

Christy:  Yeah, I like that, and that’s actually a way that we are forming questions as health coaches, as opposed to assuming anything. So, it’s actually a really good thing that you bring up, “Are you open to that.” 

Cheryl:  Or maybe, “Is this a good time,” like, is this a good time for me to bring up some ideas in terms of like, because that leaves the window open for later. Because I am the kind of person where I want to know everything, you know. I’ve told my rheumatologist if it turns out that I just need to like, you know, stand on my head and like turn around three times and say some weird chant, I would love to do that. There’s no evidence for that but if that’s what actually works in my life, I will do that, you know. So, I’m not going to be like, just because Western medicine works for me, I’m never going to consider anything else. And I think for me — this is, again, this is gonna go down a different path — but when I got diagnosed with an anxiety disorder, of course, at first, I was very defensive. I was like, “No. My anxiety is very functional. It helps me do all these things,” and they’re like, “It’s not non-functional, it’s just that it affects you. It affects your brain. And it has some positive effects, like you’re really productive, but it has some negative effects like you can’t sleep sometimes because you’re worrying about this stuff,” and I’m like, “Oh, yeah, but that feels like productive worrying,” they’re like, “Right, but like, you need to sleep.” 

So, anyway, when I realized I had an anxiety disorder and I finally accepted it, and it was just — I mean, again, disorder or just, you know, my brain seems to be wired a little bit more towards high energy kind of like, it’s really happy energy and then sometimes it goes to really like frantic, worried energy, and I realized that because I’ve had such a positive experience with Western medicine — oh, anxiety, according to my therapist, makes you want to have black or white thinking because it makes the world make more sense and you don’t have to deal with the gray areas, because the gray areas make you more anxious. Yeah, so, I think what I initially — and not in a judging way to anyone else, but just for me, I was like, “I’m not going to consider —” this is in the very beginning, like when I went immediately into medicated remission with Enbrel and methotrexate — I’m like, “I don’t need to do anything else. I’m not gonna do a diet, I’m not gonna do that because this works for me.” And then it was evolution over the years to be like, okay, when the Western meds didn’t work — so, they worked for me but I haven’t been in complete medicated remission again. So, I’ve been in what I consider like a very functional state but I have mild to moderate symptoms. Mostly mild, but some days fluctuating to moderate, sometimes fluctuating to nothing. So, I’m very much more open now to like alternative things, because why not try, you know. I went gluten free and gluten free didn’t help my joints at all, but it helped my stomach a lot, and that makes me overall feel better.

Christy:  You don’t know what you’re gonna discover by trying these things with other health benefits. Until you try, how do you know? And it’s always evolving. I mean we’re at a rate — these days, the information we learn and share across different health platforms, it’s just going so fast. So, being open-minded and being willing to try is, yeah. But you’re right. I mean, once you get something figured out that works for you, you kind of get locked in. Like, this is it. This is it, I’m not changing. I’m right here, it’s comfortable, and it’s super easy to be in that place. I for sure would say I’ve felt that way as well, like, “Oh, I’m good now. What else what else do I have to do?”

[Intermission begins]

Hi, everyone! I’m interrupting really quickly to remind you that this podcast is brought to you by The Rheumatoid Arthritis Roadmap. It’s a comprehensive online education and support program that I created from scratch to help people learn how to live a full life despite rheumatoid arthritis. In the course, you get to learn how to manage everything from physical symptoms like pain and fatigue, to social and emotional aspects of living with rheumatoid arthritis. I even cover the logistics of things like how to track symptoms and how to advocate for yourself in medical appointments. To learn more, go to myarthritislife.net. 

[Intermission ends]

Cheryl:   How do you manage the mental side of, you know, like, unknowns?

Christy:  That’s another piece of it that is so hard. I think, now that I’ve lived with this for a number of years, and I’ve been able to accomplish some things that I wanted to, and I just have been very blessed and lucky, you get into place where, okay, you don’t have room to feel any kind of sadness over anything anymore. No, like, “You have it good now so don’t complain,” but I’ve noticed like I still think, “Oh, my gosh, but this is always around. It’s weighing on me, it doesn’t go away.” There is like this — it’s like the beast behind you. You’re like, when’s it gonna catch up to me again. And you carry that around on your back. I realized in the last few years that that’s just the thing, and it’s not going to disappear. I just have to manage the beast back there. And I think having the plan, like you talked about, you know, what mindset are you going to have once Orencia wears off, something I’ve questioned all the time. What am I going to do when I can’t do what I’m doing now? And I have backup plans, I do. They’re in the archive folder I’m going to go through, because I refuse — one thing I will say, I will not go back to that mental place I was before because that was fear, it was uncertainty, it was anxiety. It was a lot of really bad things that do not help. And I don’t want to go to that place again if I can help it. 

There’s a part of it that is just part of living with chronic illness, but if you have preparation, and plans, and positive mindset that you have already overcome a lot so you’re going to be able to do it again. This is powerful. So, yeah, it’s just a new thing I’ve noticed in the last few years. I was like, I should feel so amazing now that things have been decent and my family was raised. But I think the farther the longer you’re in remission or you’ve had these years, the more you’re like how much longer do I get? 

Cheryl:  Yeah. And you mentioned that whenever hear the word ‘uncertainty’, it triggers me to think in a positive way about Acceptance and Commitment Therapy, which I think I mentioned like every episode, but it’s the approach that my therapist worked — that used — that really, really was life changing for me. Because it focuses on, like you first said, there’s an acceptance of like — there is going to be uncertainty. Uncertainty is not a problem that you can solve in your lifetime, right. No one, the doctor couldn’t tell you 12 years ago that you were going to do well on Remicade for 12 years. They don’t have the answer. No one does. They can give you probabilities, like, “Most likely people with your experience…”, but I think we are often, again, if you have anxiety, you’re searching for the black and white answer in your search for certainty because uncertainty causes you to worry because you don’t know what to cling to, like what’s going to happen. And because if you feel this illusion that if I just know what’s going to happen, I can make a plan. And that’s why I tried to convince my therapists — I have two therapists, a psychiatrist and psychologist — anyway, I love talk about this stuff because I’ve learned so much from them and I like making fun of my former self but not, I mean, in a functional way to say like, you know, “Oh, I tried so hard to fight against this and you’re just mean.” I remember saying that a lot, like, “Why are you giving up?” like, acceptance takes a long time to wrap your head around because it can feel like settling.

Christy:  You’re right. And when you’re — you get to be a warrior in this stuff, like, you fight. Over years of fighting, it’s kind of hardwired that you’re going to fight.

Cheryl:  Right. And letting go, they call it — Russ Harris in The Happiness Trap, which I link to in every single episode because this is like my favorite book — he talks about the struggle switch. So, you can turn on or off the struggle switch. If someone tells me, “Cheryl, I don’t know when Orencia’s gonna stop working for you. I don’t know if the next medicines going to work,” I can choose to turn on the struggle switch, which is what my brain wants me to do, and rail against that and say, “No, I’m gonna go find someone,” and this is where it comes into the kind of magical thinking that can sometimes happen, not always happens, with alternative medicine where they give you that certainty, and that’s where for people have anxiety, it’s so tempting. “Oh, just do the supplement, just do this diet, and you’re gonna get cured and healed,” but the way of Acceptance and Commitment Therapy is turning off the struggle switch to say — and turning off the struggle switch means, the reality is still there. The ‘bad feeling’, quote-unquote, the fear, the uncertainty, they are still there. You are choosing not to struggle with them. You’re choosing to just — it’s mindfulness-based.

Christy:  Wow. Yeah, that’s so empowering. 

Cheryl:  It is, and it’s the most paradoxical thing because until you’re able to do it, it seems like the most disempowering thing. Because you think, “You’re telling me to just accept the uncertainty and fear? Like, no. I am going to fight this. I’m going to conquer it. I’m going to find the answer. I’m an optimist,” and then eventually being like, it’s literally philosophical. It’s like a mindfulness-based thing where you just say no, we don’t have control. We don’t control anything.

Christy:  I think that the — and why we’re able to do that, I think something I need to practice and get better at, and I will now that we’ve talked about that, awesome information — but I think that when this comes to you the first time in your life, it’s so overwhelming. It just clouds you over, and you don’t have a choice to make any kind of mindfulness choice. You’re just in emergency crisis mode for as long as it takes to figure things out. But I think once you’re in this place where, like us, you’ve had it for a while. You can choose to have more powerful mindful techniques because you see it coming. It’s a lot different when you can see it coming. 

Cheryl:  And what you were saying earlier about, you know, the fact that you — as the years go on with a chronic illness, you basically have exposure therapy, right. You’re exposed to the concept of you might have good days, you might have bad days, and you eventually, you know, there’s that quote, like, “Whenever you’re feeling really bad, remind yourself you’ve gotten through 100% of your bad days up till now,” like your track record, you know. You don’t have the evidence, from a Cognitive Behavioral Therapy standpoint, you don’t have the evidence that you’ve survived your bad days yet. It’s like your first bad day, like your first bad day with rheumatoid arthritis, you’re like, “Well, I don’t know if I’m going to survive!”

Christy:  We get to a point where we’re like, “I don’t want to have to face that again, but I know I if I did that I could do better, I can handle it better.” 

Christy:  Yeah, and it’s like parenting is a good analogy too, right, because no matter how much — you know, I worked a lot with kids. I worked with kids with severe behavioral and developmental disabilities prior to becoming a mom, and I thought, okay, well, you know, I was trying to be cautiously optimistic. I know everyone says it’s hard and it’s different when it’s your own child, but I think I’m gonna bring my experiences to my parenting, but like, there’s no way I could have prepared myself fully. I just had to survive each day, and —

Christy:  Yup. We’re all an experiment in ourselves all the time.

Cheryl:  Oh, my gosh. Totally. Oh, this is so great. I mean, I think — I’m sorry, I keep going on, I love talking about this but I’m like I want to make sure you get your —

Christy:  No, no. I love it too, and see, this is why it’s so important to share and to meet new people that we don’t know that are amazing, because just knowing that you can parallel yourself to someone on any level is great. And then just by talking to you I’ve learned things today that I want to go research. I mean, how else to you do that unless you share your story and you reach out and find these resources?

Cheryl:  Oh, totally. I’m just thinking as we’re talking, like, first of all, of course, right back at you. I’m totally learning from your experience. And also, you know, when people hear the phrase ‘arthritis’, it’s such a dry thing. It’s like, oh, joint pain. We’re having these meaning of life conversations because that’s how profoundly this affects you, and one of my little soapboxed is it’s not just joint pain.

Christy:  I don’t think that word does it justice. It’s so… It’s just, there’s an assumption about arthritis in the general community that it doesn’t even scratch the surface of what this means. 

Cheryl:  Yeah, yeah, and I know that you have some ways that you like to address the misconceptions. What are some of the common misconceptions that you want to clear up now on the podcast?

Christy:  For sure. I mean, so, I think I probably fell into the same category if I think about it but at 24, 21, I mean, you don’t even think about arthritis. That’s something Grandma has, it’s just doesn’t come to your mind. But when you’re trying to explain this to people without going into a long saga or a novel which people don’t want to hear, right. If you say ‘arthritis’ and I always cringe at that when I go to tell people, I just know they’re gonna be like, “Okay, you can just take Advil for that, so it’s okay.” 

Cheryl:  Right, exactly. 

Christy:  And I’m trying to still come up with a solution that you can educate people about it, without making it disinterest — not interesting — for to people to hear or to check out on it because I think that there just needs to be more information. So, I think, when you explain that it’s systemic — what does that mean? Systemic means, you know, an all over body autoimmune condition. It’s pretty simple, it’s just your body’s attacking itself and it’s not just one area of your body, it affects all of your vital organ systems and sometimes to, you know, varying degrees. So, I don’t know, if you have the perfect answer for that, it would be great. 

Cheryl:  No, but I do know there’s a big movement in the chronic — in the rheumatoid arthritis community by patients, by the Rheumatoid Arthritis Patient Foundation. They are trying to get it renamed to rheumatoid disease.

Christy:  I did hear that, and was thinking if it was actually a thing. 

Cheryl:  I don’t think it is likely to change in the textbooks in the official definition; however, historically, you know, juvenile idiopathic arthritis was actually renamed from — it used to be classified as juvenile rheumatoid arthritis, and they classified it as juvenile idiopathic arthritis because it’s very distinct that they found out from adult rheumatoid, and they didn’t want people to get confused. But I think that my happy middle ground as both the patient and provider would be to say, between a patient and a lay person, I think it is totally appropriate to choose to say, “I have a disease called — I have rheumatoid disease, and it’s sometimes, also known as rheumatoid arthritis, but it is a disease that affects my whole body not just my joints,” like a quick explanation like that. I like to liken it — I think that a lot of people understand either lupus or multiple sclerosis more than they understand — multiple sclerosis is a neurological condition but it has the same feature of fatigue as rheumatoid arthritis. They’re from different places but they both have fatigue that people kind of understand that that’s a major feature of that, and that lupus is like life threatening. But other people say no, people still don’t understand lupus or MS. So, that’s not a good analogy. That’s what I sometimes do use, personally.

Christy:  Great. I like that. And I have at times gone to lupus quite often, just because people, if they have heard of it, understand that it’s not about your joints. That’s not the first place people go to when you hear MS. So, it’s something that I try to bring up but, yeah, I think there’s educating that has to happen and, you know, if anyone listening is wanting to explain this to loved ones or the place they work, for example, as a conversation you might have to have, don’t feel like you — don’t feel shameful about explaining your disease to people too. I mean, you own your space. You deserve to take the time to explain to someone that you’re involved with what you can deal with and not feel bad about that. But I agree. Short and simple, to the point, and so that people understand, like, okay, this isn’t a short and easy arthritis I’m dealing with here, it can affect me. 

Cheryl:  Absolutely. And along those same lines, because this is a little dilemma that a lot of newly diagnosed patients deal with, is like how to explain this to friends and family. Do you have any other general words of wisdom, or tips, or advice for newly diagnosed patients? 

Christy:  Because I think that we’ve just learned the hard way when we go through it the first time ourselves, and you’re kind of just blindsided by it yourself too, so you’re still trying to process it. You don’t know what to say to people around you. I think the most empowering thing and conversation you can have is being vulnerable and that this is something that’s very hard for you. That this is something that you haven’t —like this is a level of hard or difficult that you haven’t faced before, and that you need that support and patience, and just asking for those things as you navigate it because it affects the people around us, for sure. And I think if you are — anytime you approach someone, right, and you come from a place of like asking for help and support, and ‘I don’t know the answers yet but I just need you to be here on my side’ is the best place to come from. Because anyone who loves you is going to want to do that. They’re going to want to step in and be there by you. And if you’re trying to give answers right away or explain it all, it’s overwhelming for them too. That can come, but I think initially just sitting down and asking for support, and patience, and love, and understanding is really key, because then you know that you have them on your side and, yeah, it’s an evolving process for sure. 

Cheryl:  Right, right. Totally. Yeah, it’s such an overwhelming period in someone’s life often, although it doesn’t work that way for everyone because there are a lot of people who’ve spent, you know, three, four years suffering without knowing why and when they get their diagnosis, it’s like a celebration because now we know — you feel validated if you’ve been medically gaslit and you feel like, “Okay, I now know there’s a potential treatment plan that could help relieve this,” so, it is really different. I definitely felt elated right after my diagnosis, like immediate, I’m talking days after, because first of all, I didn’t realize how serious it was. But also, I had been again so psychologically negatively affected by being not believed, actively disbelieved, by providers telling me I was just anorexic and hiding it from my parents. They literally called my parents and said, “We think she’s anorexic,” because unintended weight loss is a symptom of rheumatoid arthritis. Obviously, it’s not the most first symptom, it’s usually accompanied by joint pain, but I only had one joint that hurt at the time, and I was an athlete. Anyway, so. 

Christy:  Yeah, I have a similar parallel story and I won’t go into it, but yeah, I used to lose a lot of weight too and I don’t need to have to be losing weight, and it was happening. And so, yep, same story. And it is psychologically…

Cheryl:  I’m so sorry. What must have been a confounding variable was that you were postpartum too, because it might not have been as noticeable because obviously you people do lose the baby weight, but then you don’t normally continue. 

Christy:  Yeah. It took like — two years, it took to diagnose from the time I had my baby. I started getting sick, two years of deteriorating before even a diagnosis. And I’m 5’9 and 145, like a healthy just, healthy girl. But I went down to like 120-something and then my frame was very obvious that that wasn’t healthy for me. And I had a lot of people telling me things that was just like, this isn’t helpful. Just because they haven’t diagnosed me doesn’t mean you should label me a certain thing because, yeah, I understand that. I know people go through that too. And you just have to kind of have a resolve as you’re marching through to your diagnosis, that you know yourself. You know what your body’s feeling, and stand by it. 

Cheryl:  It’s so hard because there’s such a power imbalance, because I always felt that I knew my body and I always felt confident in my own self-assessment, but once I was told by multiple doctors, I’m like, well, I respect authority. I’m not like a rebel, right. My normal personality is like, well, I do what the teacher says, and the teacher’s the doctor. But I was like, it’s such a conflict. It was such a profound conflict at a younger age. Now, I’m much more, you know, confident. I’m almost 40. I’m twice as old as I practically was when I got diagnosed, but I didn’t have that. It was it was just a complete cognitive dissonance. I had confidence in myself, but I also had confidence in the doctor, and they were at odds and I just couldn’t resolve it. And you don’t get that validation till you get your diagnosis, you know, so until then you’re just lost. And how do you prove how do you prove you have something when the only people who can give you that proof don’t listen to you? Or listen to you — actually it’s worse — they listen to you and they decide that nothing is wrong, and they tell you, “Well, don’t come back, go to the psychologist because we don’t think you’re sick, you’re just anxious.” 

Christy:  Yeah, and another reason to share stories and be able to get on that phone with someone who’s dealing with this, and have someone give you some trajectory to say, “Hey, have you seen a rheumatologist yet?” 

Cheryl:  Yes, yes. Oh, the one I’ve started to get all the time now is, “Well, I have all these symptoms but my primary care did quote-unquote ‘the bloodwork’ for rheumatoid arthritis” — which there’s not just — or, ‘the blood test’, there’s not just one blood test, and then they say, “It all came back normal so they said that they won’t refer me to a rheumatologist,” eh, wrong! So, anyway, I’m not a doctor but I’m gonna say, request a second opinion. Blood work alone cannot exclusively diagnose. [Sigh] Anyway… 

Christy:  I have to say just on that note, you have to advocate for yourself. It would be so nice to say that you can check out and just listen to your doctors with this, and we need to, and we want to when we get to the right place. There are so many questions you need to have with your physician and you need to come informed and not be afraid to ask the questions. In fact, I’ve just had this conversation with my rheumatologist last month about when Remicade doesn’t work anymore. I just totally advocated for myself, because I want to know ahead of time. This was part of my plan B. I said, “Dr. Spencer, I just want to run this past you because I am going to argue this point with you, and if I’m wrong, you tell me because I trust you,” he’s been my doctor forever, but I said, “Isn’t it better for me to stay on Remicade, knowing that it’s even 80% effective versus coming off of it and trying something that might not work at all? And then I can’t go back to Remicade because sometimes it doesn’t work the next time,” and he was like, “Yes, you are absolutely correct and if we cross that bridge, we will deal with that,” so, that was just a classic example of like, that took my anxiety down that he’s not going to just rip me off of it if it’s not as effective as it was. 

Cheryl:  I had that exact conversation in terms of with Orencia, it is very very slowly seeming to wear off, but I had the exact same conversation with my rheumatologist, just in the sense of I know that we don’t rip the band-aid off immediately when you start having more symptoms because it could be just that natural ebb and flow of flares and remissions of the disease, right? Especially during a pandemic, we had the conversation of like, you know, let’s stay on Orencia until it’s really clear that’s not working anymore. That’s in my particular case, but yeah, you definitely get a more savvy relationship with your providers as you, you know, become a more mature patient, you know, older patient.

Christy:  Yes, it’s just like you feel so confident going in with your notepad and your stuff. [Laughs] 

Cheryl:  I know. That’s such a great, yeah, the advocacy comes up almost every episode too but I need to start wrapping it up, sadly. I want to make sure, is there anything else we didn’t cover that you wanted to say or, you know, any soap boxes we didn’t go on that you want to go on, because I love going on my soap boxes. 

Christy:  Absolutely. No, I think this has been great. I think we’ve been able to talk about pretty much a lot of things which is amazing. High five to us. Yeah, I hope that everyone that’s listening can gain some morsels from that and just tuck it away. I know that when I listen to podcasts or read books, there’s always nuggets that sort of put the puzzle together. So, I hope that happens here.

Christy:  I’m so appreciative. Your perspective is just really, really, you know, you have so much wisdom, and you have so many unique experiences again as an athlete, as a mom, as a health coach, you know, and I really appreciate your balanced perspective, that everyone will find what what works for them and some people need more guidance, and some people do it on their own, and we all can just support and uplift each other, right. 

Christy:  Yeah, for sure. 

Cheryl:  Yeah, so, I’m sure some people are gonna wonder where can they follow you. Of course, I’ll put it in the show notes, but for the auditory learners, where can they follow you on social media?

Christy:  Absolutely. I’m @CoachChristy10 on Instagram, and it’s just really a good place where I share my adventures and the hope for the lifestyle that I want to keep living. I hope it’s inspiring, uplifting. Sometimes I share some vulnerable stories there or just what I’ve been up to. So, yeah, follow if you’re interested. 

Cheryl:  Yeah, thank you and there’s so many little threads we could follow up on, but one last little thread is that you know, I’m sorry that you had the experience when you shared the positive things you’ve been able to do that people were kind of cutting you down from; saying, “Well, you must not be that bad.” 

Christy:  Yeah, because you know your story from start to finish, and they only see the finished side, and so they make assumptions about it. It just makes me think like how better can we share our stories or, you know, I mean, social media, it’s like, powerful, but there’s other avenues like reaching out to podcasts, and articles, and really sharing the whole story.

Cheryl:  Yeah. And I think like, one of the, I think, biggest things that has changed about me in my own mindset and outlook on life is I used to — and I still struggle with this — but I used to spend a lot of time thinking that you know, I could try to control other people’s thoughts about me, you know. “Oh, I just need to explain it better,” but I’ve definitely come to realize that other people are gonna think what they think. And there’s a degree to which I can alter how I present my story, but there’s going to be someone no matter what — and I think that the social media is kind of like a good exposure therapy for this — no matter what I say and how I say it, there’s going to be somebody who chooses from their own volition to interpret it in a way that maybe I didn’t mean it, I didn’t intend it that way, or that I did intend it and they just don’t like it, and that’s just like, I can’t control that. 

Christy:  And to learn. And I think that it will tend to make you want to not share your story if it starts to hurt, and it does hurt, but I have to say, we need to keep sharing our story because the people you do resonate with or that you touch is worth it. 

Cheryl:  Yes, yes. It’s worth the risk. And I think the risk of, you know, being or feeling unliked. You know how they say like, for every like 10 positive comments, you might get one negative one that might really sting and it’s hard. It’s hard to persevere despite that, but in my case and obviously sounds like your case, that it’s worth it to share your story because you can help so many people. 

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Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by the Rheumatoid Arthritis Roadmap, an online course that I created from scratch to help people live a full life with rheumatoid arthritis, from social and emotional aspects of coping with rheumatoid arthritis, to simple physical strategies you can use every day to manage things like pain and fatigue. You can find out more on my website, myarthritislife.net, where I also have lots of free educational resources, videos, and more.