Rising Above RA: Effie's Journey

So some of my stories revolved around characters who have disability or chronic illness , but not all of them , but that is one way I like to raise awareness through the stories that I write and also anything I do on my YouTube channel , which I haven't really posted lately much on , but it's a fun hobby for me .

And blogging , yeah , that was sort of like something I started when I was recovering from my knee replacement surgery in 2016 . It was more of a passion project than anything and just to connect with others in the community .

So , yeah , I mean , writing for me has always been very healing , so that's the way I choose to express myself and also it helps me with my emotions , with dealing with RA .

I started having symptoms around sophomore year of high school and this was back in 2003 . So a lot of the things that are known now about juvenile arthritis , especially because I was diagnosed with a subtype called polyo-articular juvenile idiopathic arthritis and it's the type of arthritis that can mimic adult rheumatoid arthritis and be as severe as it .

Unfortunately , mine sort of continued into adulthood after I was 18 and it's still occurring now in my mid-30s . But a lot of people who have juvenile arthritis they tend to outgrow it sort of quote unquote , and they can kind of like not have any symptoms in their adulthood . But that wasn't my case .

But yeah , so I was diagnosed at 18 during like pretty much my physical when I was going back to school for my junior year of high school actually senior year and then I waited six months to get a second opinion at Mayo Clinic and during this whole time I wasn't being treated because they suggested I go for a second opinion .

However , it was pretty clear cut that I did have juvenile arthritis from the blabs and the blood work . But , however , back then they were saying that it could be like Lyme disease , which I've been tested for like five times , which I do not have .

But that's a whole other story with that , because many people can still have that in their bodies and just disappears . But in any case that was sort of my ordeal and in high school it was a little difficult because I was in pain , I was having immense fatigue and muscle aches and it was very slowly like progressing , though .

So the symptoms that I was having in the beginning you wouldn't really attribute that to an auto immune disease or arthritis . It was just like general teenage issues like acne , weight gain , weight loss or just being fatigued . I was waking up at like 6 AM , I was coming home at sometimes 7 PM , so who's to say I wasn't tired from that .

So it was just a lot of very vague and subtle things that was happening at the beginning . But then things started happening where my body was just like okay , sending the alarm , something is not right . And , as many listeners and you know too , jenny , with arthritis , there's a lot of imbalances in the body to begin with , on all levels .

So that's kind of what I was going through at the time , I think with my body , because I just there was just so many things that were signaling that . And fast forward I did find out I had food intolerances and allergies , seasonal allergies , just like different GI stuff , going on .

So like my body was , I would say , probably dealing with this way before I even started having symptoms , I would say maybe from fifth grade . But again , it was so like subtle you won't even know , you know . So I think , like I read somewhere too that sometimes disease happens like year , like decades , before even begins , and I think that was my case .

So yeah , I mean , that's kind of how my diagnosis story came to being when I went to Mayo Clinic . It sort of was like the last opinion I got in regards to what I had , and then I started treatment and I started on emerald and then I landed on other medications , which we'll talk about in a little bit .

But I think other things were happening in high school too that were sort of impacting my emotional well being and other sorts of trauma like being bullied . But then there was other things that are going on in my life too that I think was a big connection to me even developing this in the first place . Yes , I had a genetic factor .

I have , you know , one aunt in Europe who has RA , but she was only diagnosed a couple of years ago . My dad had psoriasis , but again , there wasn't really anyone with arthritis in my family . However , there is like a genetic predisposition to it and I just happened to be the one that got that .

But I mean , I think there was other factors environmentally that really did trigger it . You know , because , as you know , many people know you have predispositions to a lot of diseases and many horrible ones , but you may not even get it . It just depends on if the perfect storm exists to make it , you know , ignite . So that was sort of my deal .

But yeah , with like school and stuff like I didn't really have the knowledge of accommodations and you know all that stuff until I got to college . So I think if I had been properly diagnosed in high school ahead of time then I would have had that , you know , iep and like all those things that they give to kids . But that wasn't my case .

Because when I did complain to my pediatrician when I was at sophomore I started noticing like really like strange things in my knuckles on either side and it was sort of something like I only noticed . You know , like when they say like you lose weight , you only notice it first and then it takes like a few weeks for others .

It was sort of that situation with my joints , and so when I pointed out to her she was like , oh no , it doesn't look , you know , abnormal to me . But my knuckles on either side the first two knuckles on my right and my left hand seemed a little enlarged , like nothing .

It wasn't like what I've been , was used to and so , but to someone else , it didn't look like a problem . However , the following year , that's when I started having inflammation in my wrist , inflammation in those joints that I complained about .

So it was really about like the awareness , I think back then too , with like doctors not knowing things and you know , I don't like to say unfortunate , but I think it was an unfortunate time that I was diagnosed in , because I don't think those type of things would happen as much now .

You just kept going , and so your family members are doing this , they blow it off , they don't get seen , and so there's something that they're fighting in their bodies and they don't know , and so then we're predisposed to these things , but we have no idea because they had no idea and it just keeps going on in the cycle continues .

Like I think , when they , you know , my parents obviously heard like her say there's nothing wrong . I think they just trusted her , you know . But then as I started to kind of complain and like because I mean , what parent really wants to hear that their kid is sick too ?

I think there's also like that pride and ego thing or just like not wanting to like accept it either , because it's not something anyone wants .

But I think , like , as I started to complain more , that's when my parents really were like , ok , something's going on , because I'm not really a big like complainer in that sense Like , and you know , when I was younger , especially like , and so if I were to complain or cry or do something whatever , then they knew that it was like pretty bad , you know so ,

because I was playing sports . I mean , I grew up playing sports , like nothing like an athlete or anything , but I mean a park district like volleyball , tennis , softball stuff like that , like anything that I want to be able to do . Now you know the heart contact sports .

I'm sure there's many people out there who do them , but I mean , with my joint damage I can't . So I mean so that's also like if I was hurting or aching , like maybe it was an injury , like that's what I first thought was happening .

When my niece was after a camping trip my sophomore year going into junior year that summer , I thought I just like sprained a ligament or something . You know , I was wearing my sister's knee brace when she had an accent , so it was just so weird . Yeah , it was a really bizarre time .

I like broke out on all these rashes and they found that kind of like it wasn't tied to Humira but more of like a viral infection that was going on , because I don't know if you know , but juvenile arthritis it tends to be triggered by viral infection and so I have that problem , like immunologists have seen it and stuff .

So it's like my body just doesn't react well to this epidemiavirus . So I mean , when I broke out on those rashes , it was just a sign that like the medicine was just bringing my immune system down so much and whatever was thriving was continuing to do so .

So I got off of that and then I restarted it and I was kind of hesitant to do so a couple of years ago just because the situation I went through was a really bad time with a nasty flare . But so far so good . I know I'm doing a lot more than I did back then to support my body .

But yeah , so I'm on that and I mean I've had my fair share of bad experiences . But I don't know if I want to say anything because I don't want to deter people from like taking it , because I know like that was one reason why I didn't want to take method TREX8 , the star , even though I was .

It's not like I wasn't treated , but I think for my case , like I was under treated at one point , but also like not treated properly enough , and I think that's one thing I want people to know is like if you get a diagnosis and like you get it and you don't have to be one of those people where you have to wait months and years to get an answer and

you're lucky enough to get an answer , just get on the medicine you know and do whatever else you can do functionally , alternatively . But I mean because of my case of , I mean I wish I was diagnosed three years prior and I didn't have , you know , all those issues .

But I think those three years , and maybe even earlier , were causing like damage that's irreversible now you know . So I think like early detection , early treatment , which is now like a forefront in rheumatology is like a big thing now . Back then it really wasn't , because they didn't know . So , yeah , I mean I'm on those medicines .

It's working well so far , but we'll see , you know , because that's a trick that has kind of caused issues for me too . So I'm lowering the dose , but yeah , that's it .

with you .

I think so many of us are hesitant to share , you know , if we have any bad reactions and stuff like that , because you know we don't wanna scare people , because evidently you know it's important , we need to slow down the progression of the disease , so you need to find a combination that works for you and it's I mean , it's crucial , and so you wanna kinda

you wanna help people but you don't wanna scare them away as well .

You know , I've been living with this for like 19 years now , so a lot of things that bothered me back then when I was kind of new to all this doesn't even faze me anymore , like it's like whatever , but someone else , they may be really deeply affected by it .

But I mean I made a video on YouTube about my experience with MethodTrucks and a lot of people commented on how much like they appreciated that , because all you really hear about MethodTrucks is the negatives and like that's also something that really scared me back then .

But you know cause I was told like in Mayo Clinic when I got a second opinion , it really wasn't like the best experience either . Like the doctor there was just saying things that was like on call for . But I mean then people were like you're not gonna be able to have kids on MethodTrucks , which is a completely false .

So you know , like just the fear mongering things , and I , you know , hopefully one day I'll be able to make a video on like kind of the things that you shouldn't like , kind of like fall victim to you know and then , like I'll make that like sort of like I guess , impact your treatment plan right . So we have to be like mindful of that .

And yeah , I mean honestly , methodtrucks has been a really big help , though in the big scheme of things . You know that a couple of percentage of things that I've had to deal with it in the hindsight is kind of like nowhere compared to like it being able to like work for me . Like before I even took MethodTrucks I wasn't even able to walk a few steps .

You know , now I'm able to like get up at 7 am . I don't have a problem , you know . So I think you have to think of the positives a lot in this journey . Yeah .

I was off it , I think six to eight weeks , and that was long enough for it to have an impact on me . And so together we decided you know what this combination seems to be working , and so we're gonna keep me on the combination , get back on that MethodTrucksate , because it was helping me .

And you know , just because something might help me doesn't mean it's going to help you , and what works for you doesn't mean it's gonna help me . So it's , yes , we wanna share with people and yes , we wanna encourage and support people , but it's such a fine line .

But we have to kind of just do what we have to do Exactly .

So yeah , of course I use like other things , like Saltaren and like other pain management stuff , but I feel like that and like just you know , my ice packs , my heat packs , like just all my self-care stuff , and also , I guess , like a good book , a good movie , because I feel like hobbies and stuff is really important .

That's what I would put in my Spoony Toolkit , because I think like you have to take your mind off of the constant self-care side of things when it comes to like your medications and like things you put in and out of your body .

So I think like I don't know if that makes sense , but yeah , like the things I like to do , I guess I would put in my kit , whether that's like paint or whatever , just to get my mind off of things . And then I would say the people who support me I think they're part of my Spoony Toolkit for sure , because I think without them I would not fare well .

Yeah , like I like just fun reads , I'm also reading like Greek mythology right now . I'm not , you know , I mean I'm Greek , but like I know a lot of it , but I like to read all that stuff too .

I feel like I asked it a little weird too . So , on the staying positive aspect , how do you maintain a positive outlook despite the challenges that you face ?

I think sometimes you can get too meshed in the struggle with others that you can't get pulled out of that if that makes sense . So you need two different versions of people , I think , to help you with the positivity aspect , who know you very well , Because people online know you well but they're also not there with you on person .

So I think you need that community online and you need the people in your life , because those two have really helped me when I get in negative headspaces or I have gotten in negative headspaces and I think meditation and prayer , too , really helps me . I know everyone's different , but I think when I do that every morning it just grounds me and affirmations .

I think that helps me stay positive . If that answers your question .

I think , like also , there's a stigma when people talk about their illness and openly , and people automatically say , oh , that's all you talk about , that's all you think about . Well , are you saying that about the painter , the educator , the comedian actor ? You know what I mean ? Absolutely . I mean , of course , we all post like different things .

Like we don't just post about our illness . Of course , not everything should be about it , but I think , like , also , when it comes to illness , people have that stigma attached to it . They just get uncomfortable , I think .

And then when people come think about maybe their morality , or like people in their life who may be sick , or like , just you know , people don't really like it as much , you know , because it's not like fun for them , right , exactly , but I mean , for us it could be fun , right , we know that we have a lot of fun with our spoony sisters , absolutely , brothers

, and also it's , like , you know , cathartic , cathartic . Like you can like heal from it . Like I know , when I created my Instagram , I just created just to connect with people and it was kind of like my public diary and pastel is , so it's not really like anything serious you know , yeah , you know , a funny story is my husband .

So my next question for you is an inspirational thing . Who or what do you find lifts your spirits on a difficult day ?

And also like people who , like have sort of walked in my shoes in the way when they've had like surgeries , for instance , or they have like maybe more moderate to severe damage and they're doing things that I eventually want to do , you know . So I think like I really look up and spot and and inspired

by those people . I know a lot of people like don't like the word inspiration or inspired , but I think it's not bad . You know , like people say , disabled is not a bad word . Well , inspiration , or telling someone that you inspire them or your your inspiration , is it's not bad either .

Because the way I see it is like if someone is doing something that you wish you could do , or like you don't feel like you could do , you know , because you don't , you don't believe that you can do , I think it's really important to like surround yourself by that energy and those people who are like kind of overcoming and beating those odds .

You know , of course there are situations in situations where you maybe kind of should veer off from not saying that , but I think you know it's not like a horrible thing . Thank you .

. It just it's an , it's encouraging and it's inspiring .

those people are coming from a bad place either . I think , like if you inspire someone , you inspire someone . You know , if you're inspiring them to make change , or , like , do something better for themselves , and you've , you've made it , you've made an impact .

Yeah , do you have any resources that you would recommend to listeners ?

. So I would say , you know , like the arthritis foundation creaky joints , a AI arthritis and Just a bunch of other I think there's other ones too like versus arthritis , because if you're in the UK you can find them . So I think , like really reaching out to those people , they can like Sort of steer you to what you're really looking for .

You know , because there's so many , so many like things to Like , I guess , like resources that someone can tell you , but I think like those are the best like landing spots to just like start at .

I didn't give it my full Attention , but for those lists , that's important , go to the websites , go to the Instagrams , and I think you need favorites . So that's great

.

That's also a big thing because I can say , go to Instagram , but I mean , maybe people don't want to use Instagram for this , you know so yeah , exactly Okay .

You know , cuz like online is one thing , but if you don't have anyone in your corner , like find someone that you can trust to like help you out , because there's so many people like out there who may not have like the support financially , financially , emotionally , you know like whatever there is .

I think like it's it's important to be like be honest about that , you know , and like see where you can find like a support system and then branch out and also get a support system online too , because you know people you connect with , whether it be your age , younger , older , it doesn't matter .

They will understand you a lot more sometimes than people in your personal life . Well , but maybe not , you know , maybe people in your personal life will understand .

But I think , just in general , like find a way to connect with people and whatever way like is beneficial for you , and I think just also will be like honest with your provider on how you're feeling , what you're feeling , and don't be afraid to ask questions and also don't be afraid to Like leave a doctor if they're not doing it for you , because it's it's a

relationship . But I know that's easier said than done because when it comes to providers , there's so much in the in the mix , just like with any relationship , right . So I think if you're able to find a new doctor , if you need one , you should just do so earlier than you know , sooner the better 100% agree with you .

There's a few medical providers and parents who wrote stories about their kids journeys , and you know I have one parent who wrote it , with her son actually , but she's in the arthritis supporter section . But it's about like just just basically like what people deal with when they live with arthritis , because it impacts your whole life .

So there's different chapters in the book People stories and how it may be impacted them physically , mentally , emotionally , financially , spiritually , socialese . But I think the big thing here is that it's like a stories from all over the world , you know somewhat , but it's all different ages and perspectives , you know .

So I mean , if you're looking for like a well-rounded , like perspective of you know people's Individual experiences , I would definitely check this out . But that's not to say like if someone wrote a story about how it impacted physically , they're not gonna mention anything else . It's all intertwined . But you know , that's what I had the authors do .

So , yeah , yeah .

I mean I'm just flipping through it right now and just all these spaces that we're used to seeing and I love reading about them .

I think , like the publisher , I think at one point had to like put everyone's pages a certain way when she was doing the layout . I don't know , but that wasn't something I was doing . But yeah , so I think like it's nice to see all the people that I've connected with personally in the book Throughout the years .

You're not the first episode , but you're in the very beginning of season 3 and I can't wait I'm people to hear all about you and to go follow you if they're not following you . So , yeah , everyone , until next time . Don't forget your skin .