Behind the Smile with Cheryl Crow

It's just , it takes time and I'm like geez , that's not even that . I mean , there's people I follow who have , you know , maybe not in their arthritis space , but well , some . Yeah , my friend Krista , she's got like a million followers on TikTok , you know , and people are sending her messages and it's just . Yeah , it's wonderful to be able to connect .

It's just . It's just for me as a people pleaser , it's stressful because I feel like I sometimes let people down by not responding . So if I , if you've sent me a message , I didn't respond , it's not because I don't like you or something .

It's because I literally just haven't figured out a good system for myself yet where I can like respond consistently without getting like overwhelmed .

And some of these people I don't know if they're hiring out help and sending out direct messages .

You know , arthritis life arthritis underscore , life , underscore , sure , oh , it's my Instagram , but I formed my own like business entity called arthritis life and I have , you know , room to thrive , a support group program , and I have a podcast , and I recently hired somebody who has actually juvenile and glossing spondylitis and she is now in her twenties and she's

big . She is a virtual . She helps me for like five hours a week , which is awesome . So I'm working on getting the systems , but yeah , anyway .

And I went to school at a Vassar University or Vassar college actually , no , I said University in upstate New York , starting in 2000 to 2004 . And during my time there , I played soccer on this on the you know , varsity team and I did track and field , again like very active .

But in my sometime in the second year of school , like my sophomore year , I started feeling weird like my body . You know , after being an athlete and trusting my body for so long , I was like what something's weird , like it's so hard to put your finger on it , especially if you haven't been a chronic illness patient before .

Like it's almost hard for me now , because it was 20 years ago , to met , to like really remember what that felt like , because I think , like so many people , at first I just minimized it like oh , I must have . You know , I was feeling on my stomach was the first symptom actually , which is not the most typical for rheumatoid arthritis .

But if you do look on any of the major websites , under the list of symptoms of rheumatoid arthritis , appetite loss and unintended weight loss are on the main list of symptoms , are just not as high up as bilateral joint pain in the distal joints , the tiny joints of the fingers and toes , and worse in the morning and better with activity .

But yeah , you know it was . It was that , along with just pain in my knee , and so I understand why it was hard for them to figure out what was going on . So yeah , you had the stomach issues .

Did you have a certain area of the body that started getting inflamed at all ?

I found out later that's actually called rheumatoid catechia or catechia , however you pronounce it . It's muscle wasting associated with uncontrolled rheumatoid arthritis . I did have what I perceived as a very minor amount of joint pain Again , having been an athlete putting my body through so much and once , like you , dissociate from your body sometimes .

And actually I was one of my doctors , 21 . So you know he's like my . My former athletes are sometimes my toughest patients because they don't listen to their body and I was like that's so true . And then I had one . I called up my sprained finger because I thought it was a sprained finger . Again , it wasn't the worst of my problems .

I'm like hi , I must have like I thought I had like stomach cancer or something . I was so preoccupied , you know , with the biggest problem . It wasn't just appetite loss , it was that I felt extremely uncomfortable Every time I ate . I felt like there was a bowling ball on my stomach Like .

No matter what I ate , it could be like one quarter of a piece of toast Like . And I ended up getting diagnosed with gastroparesis , which is a dysautonomia condition where you have delayed stomach emptying , and so that was . I had that , but it wasn't clearly like one . There wasn't any great treatment for it , and there was , it wasn't like .

Once that got a little bit resolved and suddenly everything else went away . I still had a lot of weird symptoms . So sorry , you asked about the flare up I did then in the summer 2003 . I had the , the , the big flare up that led to the diagnosis . So I had a flare . I suddenly woke up one morning I had gotten a little GI bug like .

I had been throwing up like a , like a food poisoning , and I think that was the final straw for my immune system . It was like trying to fight the food poisoning , because in a lot of times there's a theory of like that these autoimmune diseases like and other chronic conditions like multiple sclerosis and stuff .

They're often like a genetic susceptibility meets an environmental trigger . So I had this susceptibility . It was festering in my system , like the inflammation was festering and maybe causing some of the the systemic symptoms . And then I had the one sprained finger for over a year and I didn't even treat that .

I went to like the athletic trainer like I didn't even go to like a physical therapist or like it just wasn't that big of a deal . It just hurt . And so this isn't to minimize anyone else's pain , it's just my . You know , in my particular story that wasn't the worst part .

But then the morning I woke up after food poisoning with all of my joints hurting , like I was like this is new . So then the doctors I had been gaslit to say you know , you're not sick , you're just anxious . And they kept trying to tell me just go to therapy . And I ended up getting really anxious . But I never had a lot of anxiety before that .

But then I did go on the month before I got diagnosed I finally caved in and I went on an anxiety medicine because I was like , okay , I am now so anxious because I know something's wrong on my body but no one's listening to me that I will just take these medicines , even though I'm worried that you're going to call me like just anxious and hyper contract .

But then once I got the accurate diagnosis . I my anxiety and I got treatment . I got treated really early aggressive treatment with enbryl and methotrexate and I responded really well and went into Medicaid remission for six full years and my anxiety like basically went away at that point so I kind of felt like vindicated , like it wasn't all anxiety .

But later on you can run but you can't hide . So later on I ended up struggling with anxiety again . But long story short , short story long . I got diagnosed at age 21, . I went in 2003 , 20 years ago , and I got . I had a really successful treatment plan , initially with Western medication .

And the thing is , back then they the recommendation was to go off your medicines if you were doing well on your pregnancy , because they didn't have enough research to show that they were safe .

Now they do , now that their most medications are considered safe for pregnancy in remitorid arthritis except for methotrexate , of course , and a few others but so I went off of it and then it never worked as well again .

Like I went back on remicade pro postpartum and I would say , just overall , I've been more on like mild to moderate disease activity since 2014 . In the last 10 years I haven't been in like full medicated remission . I think my body is changing , my immune system changed a lot and I've been . It's been up and down , but not not severe .

There have been times when I've like been limping and have to be like , okay , maybe my medicine's not working as well . So I'm on my fifth biologic now . So each time the biologics work really well until they don't you know what I mean Until my body kind of works around them .

But overall I'm very happy with my degree of functioning and my rheumatologist says the severity was really severe when I got diagnosed , like they would expect , like with no treatment I would have been not mobile , you know , within five or six years . So it's definitely a success story overall .

It's just it's not like I have no pain , like I'm getting ready for the Taylor Swift concert and I have to really consider like my energy levels and the amount of , like foot pain I might be experiencing by the end of the night and stuff like that . So yeah , Okay .

So I'm going to have certain shoes that are like for the pictures or for walking on the stadium , and the other shoes for , like , walking back afterwards or for if I've been on my feet for a while at the stadium . Once I'm in my chair , I'm going to be in my seating area .

No one's going to be sitting down at the concert unless you can't stand up right on . The majority of people are going to be standing . So , yeah , I had to think about that a lot , like I'm going two nights in a row . So we're actually staying at a hotel , just as an example like of , you know , thinking about how to conserve your energy .

We're staying at a hotel partly because we were worried about getting out We've heard horror stories of people who got stuck , you know , for two hours waiting for like a ride share but also because we're like , okay , then that way we can walk to the hotel . It's like less than a mile away and then like rest before the next one , the next concert .

But yeah , I'm really excited , I feel very lucky .

She had our cute boots , but she took the wise shoes with her as well , and I think that's really great advice to give to anyone that's preparing to go to a concert or any kind of big event , whether that it be a wedding or oh gosh , we went to a masquerade ball . Oh no , not fun . I was like oh no , it was .

I ended up sneaking and taking my shoes off and hiding my feet under the table and that's not good people . Don't do that . Don't be mean . Take the , take the good shoes .

So extra pain meds , extra water , extra snacks , extra earplugs , like you know , things like that for me , because you know , some people don't know that rheumatoid arthritis can actually affect your ears long term . It's not the most common area of inflammation , but you have little tiny bones in your inner ear that can be affected .

So I try to protect my ears and actually just don't enjoy this feeling of super loud . You know Music . I always just wear earplugs at concerts and it's still like plenty loud , oh , absolutely , yeah , just thinking about what could you planning for ? Like hoping for the best but planning for the worst .

So where did this whole room to thrive come from ? What sparked the idea ? Yeah , yeah .

appear in childhood more often . And anyway , long story short , I learned all these things . I was like why was I never taught them ? Like , basically , lifestyle medicines I mentioned medications earlier . They are for sure the most important like foundation of my treatment and that's kind of backed by a lot of scientific evidence .

But there's individual variability in how well , how much , lifestyle factors can help you with any chronic condition , especially rheumatoid arthritis . Some people it's nutrition that moves the needle , some people it's exercise . For me it's a combination of exercise , sleep . People forget sleep when they think of lifestyle . Sleep is so important .

It is such a vital time for your immune system and your immune health and then stress management , mental health .

So I learned all these tips and tricks for mindfulness how can that help people living with chronic pain and chronic conditions , learning about maximizing your sleep , maximizing your you know , figuring out different kinds of pillars of exercise , and I was like why isn't this being taught to patients ?

So why are we given just a 20 minute appointment every three months and not even to talk about only the medications ? Again , the medications are so important . But what about all these other things that physical therapists , occupational therapists , social workers , counselors ? There should be a team , just like there is with children . They get teams actually .

So juvenile arthritis typically they get a team approach , but for some reason , for adults it's like figured out . So I actually figured it was on social media when it really started being apparent to me Like I would share . I started my own channel just for fun , right , just to just . You know , I'm extroverted , like you .

I it's as a way to kind of share my tips and tricks and also connect to others , and I just kept getting these comments like wow , I didn't know that . Like I wish someone had taught me that . And so I was like OK , somebody needs to do this , somebody needs to do this . And then finally I was like I need to be the somebody to do this .

So it was really with COVID , to be honest . Like I was finally like had the time to really devote to . I formed Arthritis Life in 2019 , but I didn't just develop the room to thrive framework and program until 2020 .

And the framework is really just thrives and acronym , but it's basically , you know , it's every tool that you might need in your toolbox , not just physical tools for pain and fatigue , but also tools and tips for relationships . You know . Social life in your inner world that's what the I stands for . Your values and valued activities , that's what the V stands for .

And executive functioning that's what the E stands for . That's like the job , like the boring adulting tasks that are so important for being a chronic illness patient , like tracking symptoms and advocating for yourself . I know when you came on my podcast , we talked about advocacy a lot .

So I teach people in the in my online self-paced course , and I also have a option where you can do the course plus 12 week support group program with the option to continue afterwards .

So it's just been so wonderful seeing people go from that state of like complete overwhelm , loneliness , isolation , like fear , to being like OK , I don't , I'm not going to like cure you or heal you . Like I do want to be clear , like it's giving you tools to cope with this .

There is no cure at this time , but there are things you can do to improve your quality of life , and that's what I teach and and people just at the . By the end of the program , they are typically feeling so much more relieved and connected and less alone , and it's just been wonderful .

I didn't even think about looking at my condition online . It just was kind of like you just did what your doctor said and in some ways , there's a simplicity to that . Right , there are some benefits of that . I've seen people go down rabbit holes online and they get really let astray by misinformation or snake oil salesman .

But the best part about social media for me is the social support and connections and people saying you know you got this , you can do this , the encouragement you know . Yeah , it's really amazing .

You know , a person can get on and say you know , this is what I woke up with this morning . I'm on this medication . I've been on it a week . Did anyone else have another symptom like this ? And you , can you give me some advice ? What did you do ? Do I need to see the doctor ? Is it OK ?

I love the fact that we have that option that we didn't have before .

You know , why can't I just do the things everyone else does ? You're like no , it's OK . You know , when you give someone else the support , it's almost like you're giving them the words that you needed to hear too , you know . So , yeah , it's , it's been really wonderful .

Sorry , but it's like that's what I think is such a bait and switch sometimes with the way the medicines can work and then not , it's not . The medicines fall as your body . Right . I like to say my immune system is kind of misguided enough to attack my own healthy tissue , but it's smart enough to outsmart the medicine .

Now , if you're listening and you've been a medicated remission and you're like oh no , that means it's going to happen to me . It doesn't mean it's going to , it just means some people it happens to . And I wish you had asked me before what did you wish you'd known ? That's , honestly , one of the few things .

I just wish I had known that my medication wasn't guaranteed to last forever , because I would have done a few things that are on my life to do list , like run a marathon and stuff that I always just had put off that . Now I'm like why don't know if my body could do that ? You know so , um so , oh my gosh , wait , what was the original question ?

I'm sorry my brain fog is it's oh the . Why did I start singing haunted Huh .

Like that is actually what the doctors accused me of having to my parents Like and I'm sorry , trigger warning for those who've had an eating disorder it was just so frustrating for me to knowing that I didn't have an eating disorder or anybody image issues . I wanted to be , have a bigger , stronger body , like I did before .

Because of because of seeing myself as an athlete , I was so frustrated that I was wasting away and no one could help me , but anyway . So they were like what is going on ? Like , does she have again ? Does she have cancer ? Does she like what is what is wrong with her body ? Because this is not normal for her .

And then when they saw me get diagnosed and treated and started feeling better , everyone was like , yay , we figured it out . Like check . Like we climbed the mountain and the mountain was like getting a diagnosis it's rheumatoid arthritis . You get the treatment . You're on the other side Like it's done . Chapter closed book ended . No more chapters .

No , it's not a series . It's just one book . Oh , actually , then when my body created Entomized Enrol , it was like , oh , okay , book two , like here's a new chapter or here's a new I'm using the chapter metaphor but it's like new book in the series and so I think we were all confused and then , and so you know , I had to explain to them .

Now actually it's a bigger deal than I thought . It was Like that is actually when I grieve the diagnosis was my first big flare up post diagnosis . Initially I didn't really grieve it because I was like whatever , I don't care . Like I'm feel like I'm dying and you're telling me that this medicine can help me .

Yeah , give it to me Like fine , you know , so they . But I think in terms of relationships overall , like with my husband or dating partners and stuff , I think it was more like a matter of understanding .

Like I don't know why , honestly , like this , sorry , my son's in the room so he's listening to , he's watching the Simpsons , but I don't , honestly , I don't even understand what electrical engineering is , but like , literally everyone I've dated , like leading up to my husband , was some sort of engineer Like , or one of them is a bioinformaticist .

He's like he's , he was Joe T wanted to get like a doctorate and medical doctorate and a PhD so that he can make people call him doctor , doctor . But he got it .

Then you have to teach , like I had to learn how to cope with unsolvable problems and I had to teach my partner and my friends , family , how to cope . Because what people do is they think that the right kind of optimism is like oh , we'll just figure it out .

Like try a different diet , try a different met , try a different doctor , try a different chill your childhood trauma . Like everyone wants to think that there's a solution and a reason and it's hard . I think it's important and it's been really helpful in my journey to say what if there isn't ? Like what if there isn't ?

And what if you can still be okay with that ? Like what if this is as good as it gets right now and I can just live my life with pain ? Exactly , that's okay .

Every part has a place to go , it all works together , and so when I started having health problems , he couldn't fix me , and that is something that we need to figure out .

I don't know if there's a magical answer on how to help our spouses , but there's got to be a way that we can help them understand that we can't be fixed and we just need to find a way of dealing and moving forward .

So let's say you have two groups of people with rheumatoid arthritis and you want to see whether an exercise intervention is going to help them . The null hypothesis is always that it's not going to help them . It's like just that nothing will change . The default state will be the same . Their pain , their fatigue , their energy levels will all be the same .

And then you do the intervention and you compare later on like , oh , is there a significant difference between the groups ? So what I say to my spouse to help them is sometimes is to say look , the null hypothesis is that nothing will change . Let's look that reality in the face .

It's that this is the disease , it is what it is and the treatments are what they are right now . What if it doesn't get better ? How can we function ? I'm not in a coma . There are things and I actually said it to the groups , sometimes the rheumatoid arthritis groups when I have to do tough love because it is important .

All of your feelings are 100% valid and someone's always going to have it worse than you . So I don't mean to say this in terms of toxic positivity or whatever , but it's like you have choices in your life still . You have your body hurts , you're fatigued . That's a huge deal , but you have choices within that reality .

It might not be the same as now , it might get worse . It is technically a progressive disease . Okay , what if it doesn't ever get better ? Like people who had these diseases before the current air of medications , they still were able to find ways or have choices in their lives that could lead them towards a sense of meaning and value and satisfaction For me .

I'm not religious . This is the only life I get . I'm probably halfway through my life , if I'm lucky . So I'm like do I want to spend the rest of my life chasing a cure that might never come , or do I want to use what time I have left to just have a meaningful , joyful existence ?

I want to see everyone out there find their way to help support someone . Yeah , 100% .

I don't want someone to be watching me while I'm doing this . You know so , it's everywhere . Everyone copes differently , but but yeah , absolutely , yeah , yeah .

And the mindset or the therapeutic approach that my therapist taught me that I also use in the group is acceptance and commitment therapy , which goes by act for short , and it's kind of like if mindfulness and cognitive behavior therapy is the best of mindfulness and the best of cognitive behavior therapy .

When you say , like , can I accept what the present moment is in terms of not liking it , acceptance does not mean liking it . Acceptance means taking what's offered . Like life is offering you this . Can you sit with it for one moment that the present moment is what it is ?

I'm connecting to that , and then you commit to living according to your values , doing what matters to you in the moment , despite whatever shit that you've been dealt in your life Sorry , whatever stuff you've been dealt with , and that is a very practical approach .

I think that that resonates with me and it does seem to resonate with my husband as like an engineer as well , but I think he still has a hard time . Like I think it sounds like yours too , like they're like , but there must be something we can do .

Or or sometimes in the , in their worst moment , sometimes people can you know I've seen in the groups people say that their spouse thinks it must be their fault , they must not have been trying hard enough , and that's really rough and you kind of have to have boundaries and I'm like , look , you need to trust me that I am doing my best , or that I'm doing

like a human amount , like , yeah , I'm not going to be the perfect patient every moment , but that doesn't mean that the flare up is my fault , you know .

like ankylosine spondylitis , this psoriatic arthritis , lupus too , but they have people who've had it longer have experienced the pain of trying to do on their own .

So when someone comes by , like a guy like myself , then it's even more helpful because you're like wow , I spent all this time floundering around trying to wrap my head around this when I could have just gotten a little bit of support earlier . So it is for anyone , no matter how long they've had the condition or how short .

There was somebody who got literally joined at the last minute who had gotten diagnosed five days earlier . So it's anyone from 15 years or 20 years to newly diagnosed .

But it's been really fun actually , to be honest , having mixed groups is mixed in terms of ages , gender , geographic region and length of diagnosis , and what's nice is that everyone has something different to offer .

Right , you can kind of share your experience and then someone else who just got diagnosed , who's maybe their doctor is , has a new , fresh perspective that maybe your doctor didn't ever stop to explain to you . They can share that . So , yeah , it's definitely open to anyone . Okay , that's great to know .

In the occupational therapy world they're called like assistive technology or assistive devices , and so some of them are you won't even think about as a separate device , but one that I use a lot , have been using a lot lately , is speech to text technologies , and I guess kind of consider it a gadget , not really because it comes on your phone now , but it used

to have to be that you would have to get like a separate like thing to allow you to just do speech to text , but that really helps save your hands when you've been , like you know doing , trying to do a lot like typing on the phone . But another one speaking of phones , because you and I are both on social media a lot is a little tripod .

So I use this tripod actually not only for videoing , but use a tripod to hold , because I don't , yeah , to hold . Oh , you have like the tripod . Yeah , I love that . One mind ended up breaking .

After a while , though , I switch to this one , and then I use things that I use a couple more on , like a multi purpose items would be like my special scissors oh shoot , they're upstairs , but I have the other fingers easy action scissors that are instead of having to squeeze actively with your thumb .

You squeeze up with the other fingers and the thumb part is just straight .

I also use a lot of gadgets that have a 90 degree angle handle , so like , if you think of a typical knife arm around like the shaft of the knife in a way where you're like pronating your wrist , so where you can see the top of the palm or sorry that the back of your hand , the knuckle part of your hand .

You actually would hold it like a 90 degree angle to the blade . I have those kind of that kind of handle for a knife in the kitchen and for , like gardening tools . It's really nice because you end up using like your big muscles and joints instead of the small tender ones in your hand . And then opening aids you know , opening aids in the kitchen .

I have like a jiffy twist which is under cabinet opener and then like the kitchen mama hands free openers .

I had ordered a pair and somehow I got two in the mail , amazing . I gave the other one to my mother in law because you know she's got arthritis issues , so I figure , why not ? She probably can use it , hey .

But you know , I don't know about you , but everything revolves around my hands , because my hands can get really achy , and so I get so excited when you're sharing all kinds of fun things knives , all the , all the things . I love it .

So I do , honestly , rely a lot on like music and I know we've been talking about Taylor Swift . I do love her , obviously , but also , you know there are also some songs that are like I do . I love women , like I have Kesha . You know , all my playlists are like Lord and I also love what women's voices . But also when it comes to men , it's hilarious .

I noticed this . I like more like gravelly voices , like Elton John and , like you know , like Tom weights and like always other . I mean , why are all like the guys singers I listen to have like weird voices and the girl voices are like pretty voices and I just like pop music . So I and I listened to .

I was born in 1981 , so I have some like older songs , like hold on by Wilson Phillips and like inspirational , you know , songs to help you or just breathe by . Wait , what do I want to say ? Sarah , Barry , alice , oh , there's Taylor Swift one , and then there's the Michelle Brown . Well , there's lots of songs called breathe .

Actually , you know , there's just so many great . So I think music and then I am very extroverted , like extrovert down to the core , so you know , connecting to friends , family , and I guess I count my dog in that that's , that's really really , that's really helpful . Yeah .

Sometimes I'm like , okay , I'm not in the mood for Prince . I've heard him a million times today . Yeah , yeah , something else .

Or you know movies and stuff like that , but but other times it's more the music . Yeah , yeah .

If you drive down highway 101 and and I would say actually the whole entirety of highway 101 from Washington , oregon , california , we've done the road trip from San Francisco to LA , if you even go down all the way to San Diego . You know , so I'm we're gonna be the westerners here .

But if you can , if you can get yourself there , hawaii , of course , is really helpful though it's , it's beautiful , you can relax on the beach , in water is so good for the joints , it's warm water , but for me it does . Typically the kind of heat plus humidity results for me in swelling .

I don't get swelling with just humidity , because Seattle's humid a lot of times , right With the rain , but I don't get unless it's hot and humid . I don't get a lot of swelling . So that can be a little tricky . I've noticed that in Hawaii . But yeah , I've always , you know , and I've been extremely fortunate .

I've traveled a lot , both before and after my diagnosis . I actually was in Australia doing a study abroad in 2003, . In the three months before I got my , came back home and got my diagnosis , finally , and I was not feeling well .

But I kind of remember this moment when I was like , well , I'm just , I've always wanted to go to Australia and study like Aboriginal culture , and like I'm either going to do it . Feeling like I'm either going to do it feeling crappy or not at all , like I don't know when I'm going to have this chance again .

So I'm not as well , but but yeah , I like , I like , I like seeing new , new cultures and new places . I've never been to South America , so that's somewhere like on my list I love to go to , like the Galapagos Islands and like see the turtles and all that stuff .

So you can't really know ahead of time , like you can know a little bit ahead of time , but not as far ahead as you'd probably plan . And Kauai is beautiful because it's very rugged , you know , and not very explore , or it's the least populated island . Oahu is like the main , you know , the one with the capital on smock of real city , I think .

I just think Maui has the best of all because it has areas , it has all different climates , it has a mountain , it has , you know , sunny areas , rainy areas , and it has a lot of things to do , but it doesn't feel as like built up , as like Oahu . So , and I love , the turtles are my favorite , like swimming with , you know , snorkeling with the turtles .

You can just walk in numerous places on Maui and just literally you don't even need to know how to swim , you can have a life , check it on . You could just walk into the water up to your knees and just put your face in the water with a snorkel on and like sea turtles . It's crazy .

. Yeah , we've gone to Oahu the last two years and we're trying to decide between Maui and Kauai . Now Maui , maui . We're so torn . There's , honestly , one reason we specifically have wanted to go to Kauai , but we keep kind of leaning towards Maui . So there's that oh gosh .

I always call it the candy king canal and I don't think that's what it is , but it's that that canal that you can slide down . It has like a natural , it's almost like a lazy river .

I probably want to do it again , just because I don't the sand hurt my feet .

The public transport is extremely reliable , so you can get everywhere . Public transport , you know , get a seat on the trains and very clean , good food , amazing . You know history and all that stuff .

It sounds like a pop psychology book but it is a beginner friendly guide to understanding actually acceptance and commitment therapy principles , because the happiness trap is at the harder we try to be happy , the less likely we are to be happy and the more we accept that life is suffering for most people , or life involves suffering , inevitably , the happier we are ,

so that it's like a paradox . You know , you could almost call it the happiness paradox , and so that book has helped me more than that book , along with therapy . I can't really separate them right Because my therapist practiced an act congruent approach , so I learned from both the therapist and the book .

But that is the number of people like oh , I got diagnosis for my arthritis . What book do you recommend ? I'm like the Happiness Trap and they're like what that's not teaching me about arthritis . The thing is it teaches you about coping with anxiety , depression , uncertainty .

These are all the things that have a huge impact on your quality of life when you live with this Because it's in it . You're going to figure out the tools in the toolbox .

You can figure out what , generally speaking , what's going to help you with it , whether it's compression gloves , whether it's the gadgets , whether it's the medications , a combination of everything . But you can't hide .

You can run , but you can't hide from the inevitability of suffering , of disappointment , of frustration , of big emotions in life with a chronic illness specifically and just generally speaking . So that book , the Happiness Trap , I do think for real , valid information .

A lot of people think about the nonprofits like Creeky Joints and the Arthritis Foundation , which I love and I recommend those . So disease specific nonprofits typically have good curation of their information . But what an underappreciated one is the American College of Rheumatology .

That is like the American Academy of Pediatrics but for rheumatologists , and the reason that's so helpful is because they're like the academics , right , they're the ones that are like up to speed on the very latest research and they have patient facing .

I'm actually volunteering on one of their committees for marketing and communications to get more patients to understand that they have patient friendly materials on their website as well . So those are my main recommendations .

You know not only rheumatoid arthritis people , but just fellow Spoonies in general .

I understand that that doesn't sound exciting to a lot of people and I will say that when I first people were introducing me to the idea that you should try mindfulness , I was like stop , like don't , I don't want to connect to the present moment because the present moment sucks . I want to try to find a better moment in the future .

Like , don't , tell me to just accept what's going on . So if you've heard me talk about that and be like , oh no , that's not really for me , I totally get it , but I would say just , I would encourage you to look into what mindfulness truly means , because it doesn't mean being Zen or at peace or loving everything that's going on in your life .

It truly means being able to just simply connect to the present moment and tolerate it for like one second . Like , and that can actually be really empowering . Because I realized through my therapy that a lot of my anxiety is about like the future and wanting to control things , and control is ultimately like an illusion , like we have no . Like .

What were your worries on March 1 , 2020 , like those worries were completely irrelevant one day later , right when the pandemic like spread to the US . So it's like you being able to surrender when that's the last thing you want . I get that . It's such a paradox .

But I really encourage you to like , imagine or try , just try a mindfulness based approach and see if that can help you not just in rheumatoid arthritis but in all areas of your life . And also just know that you're and , on a totally different note , just know that you're not alone . I think everyone feels alone . It's like a pretty little secret .

I've seen it in every group . I've done Everyone's like , but you all have it figured out . No , no one has it figured out . No one has it all figured out . Everyone feels alone sometimes . To quote REN , everybody hurts sometimes and so you're not doing it wrong . It's hard because it's hard . It's not hard because you're doing it wrong .

So that's like five different ideas .

I can surround myself with amazing people like Cheryl , but that doesn't mean I'm not going to have a lonely day .